tag:blogger.com,1999:blog-71954009962321581162024-02-19T02:45:11.227-08:00The Sloan Siblings JRA JourneyMany of our close friends and family often ask "how are the kids doing"? Most people do not understand what Juvenile Rheumatoid Arthritis (JRA) really is and how it deeply affects Jake, Hannah, and our entire family! Sometimes all I can do is walk away, hide my tears, and just pretend all is okay! We share this JRA Journey with you and hope you can pray for Jake and Hannah and the other 300,000 children who suffer from JRA.Anonymoushttp://www.blogger.com/profile/13405391515898480443noreply@blogger.comBlogger28125tag:blogger.com,1999:blog-7195400996232158116.post-67867110239638005352013-05-07T20:56:00.000-07:002013-05-08T04:46:24.795-07:00Always Learning.....Autoimmune Diseases Keep Overlapping!I received a email this week and on the bottom header, It really got my attention. Did you know?<br />
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Did you know that <u><i><b>TODAY:</b></i></u><br />
*50 million men, woman and children are in pain from arthritis<br />
*140,000 people with arthritis will visit their doctor<br />
* 3,750 joints will be replaced<br />
* Arthritis will be the largest category of disability claims filed<br />
* Arthritis will cost this country $350M<br />
* 3 people will DIE today from arthritis <br />
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Our family also learned about another auto immune disorder, <i><b>Relapsing Polychondritis.</b></i> No matter how seasoned we are, there is so much more to learn and to continue to advocate and help find a cure. Last week, we had our regular rheumatology appointment and I was proud to share I thought there had been improvement with both Hannah and Jake. Then, I casually mention that Hannah has a new symptom of her right ear getting HOT and RED. I didn't expect to hear anything in response, but instead I was informed about the possibility of Hannah having<i><b> RELAPSING </b><b>POLYCHONDRITIS. </b></i>I had never heard of such a thing, and asked for clarification and spelling of it. Dr. S shared with me as to how it affects various tissues of the body, including ears. More questions were asked, and I am to watch Hannah closely for inflammation in the ear when it turns red and hot and watch out for throat pain or hoarseness in her voice. He also shared it requires much more AGGRESSIVE treatment, than Hannah's current treatment. I asked what could that possibly be, and the answer I didn't want to hear...... Daily oral <i>prednisone </i>is the first line drug, combined with Methotrexate. <i> </i>I HATE METHOTREXATE and STEROIDS!! Hannah already gets IV steroid infusions every 14 days it messes with her in so many ways. We will NOT claim Hannah has Relapsing Polychondritis and continue to ask for it ALL to go away!!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhML2PoDnkcrL3oyA4pKqN_UVUiBNlbvBN_1Wzmg0URtAPmpaRdcguH3reuKFMxUp_nlOluwR1oUcPT3E-8p3FzGvbqNlcVlQmiEr4v2JOTJ1xT1w_A7enG99KVTf2KSceoNQr_iiuXAn7F/s1600/8A535D20-E4FD-42F4-AE90-C9B9D2ADA438.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhML2PoDnkcrL3oyA4pKqN_UVUiBNlbvBN_1Wzmg0URtAPmpaRdcguH3reuKFMxUp_nlOluwR1oUcPT3E-8p3FzGvbqNlcVlQmiEr4v2JOTJ1xT1w_A7enG99KVTf2KSceoNQr_iiuXAn7F/s320/8A535D20-E4FD-42F4-AE90-C9B9D2ADA438.JPG" width="320" /></a></div>
<span id="goog_1210684547"></span><span id="goog_1210684548"></span><span id="goog_1210684583"></span><span id="goog_1210684584"></span>What is Relapsing Polychondritis? It is a uncommon, auto immune disease in which the human body's immune system begins to attack and destroy the cartilage tissues in the body. Tissues that can become inflamed include the ears, nose, joints, spine and windpipe (trachea), heart valves, rib cage, and sinus cavities. The eyes, heart, and blood vessels can also be affected. It is also sometimes called the "red ear syndrome". Initially, the most common sign to look for is a painful, red and swollen ear. Fever, fatigue, and weight loss can also develop. It affects 3-5 people per million in the US, and can be life-threatening. It is potentially a dangerous disease and with inflammation of the cartilage of the windpipe (trachea), heart, aorta, and blood vessels, it can certainly be fatal. There is no one specific test for diagnosing. Relapsing Polychondritis can be associated with rheumatoid arthritis and ankylosing spondylitis. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_uReSFvFtfm9lizGAt4iPGsonU3qvv183RMWauCyvmGZK9tgjNy3g_T6KMnIgQdUhvt5mjif6gToHPb13hWGFH06Onn6EbFxTBMi1kOh8nQ3WvJoBj70LvWNT5D_nBtAncJZWAKWMwUDi/s1600/photo+9.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="298" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_uReSFvFtfm9lizGAt4iPGsonU3qvv183RMWauCyvmGZK9tgjNy3g_T6KMnIgQdUhvt5mjif6gToHPb13hWGFH06Onn6EbFxTBMi1kOh8nQ3WvJoBj70LvWNT5D_nBtAncJZWAKWMwUDi/s400/photo+9.JPG" width="400" /></a>We also got a brief report on Jake's recent <b><i>Gastric Emptying Scan</i></b> he had at Shands Hospital in late February. Jake had this gastric emptying test to help measure the time it takes his food to empty from his stomach and enter his small intestine. It also is to help us to figure out why Jake is vomiting, having abdominal pain, and having a hard time gaining weight. His scan studies indicated that it took Jake 91 minutes, which was slightly abnormal and took longer than normal for his radioactive eggs to leave his stomach. Not really sure what is the next step ??? We are in limbo and awaiting our new medical consult appointments at Vanderbuilt. In the meantime, Jake has lost a few pounds that he had just gained in March. His GI issues are still a mystery to us. We can't figure out his pattern and explain why he vomits when he does? Sunday was a beautiful day- and we decided after church to go to a park to play a bit. As much as Jake wanted to play, he kept coming back to me, complaining he didn't feel well. Once again, he didn't make it an hour before vomiting. There goes any calories he had consumed that day!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhg-aB5YZeeccDV8BZuaXfWlpGx10zP7FaY3EYhaWQvU6sxHBOmFuoMXcB6R5QKJmIr1bxftOCaFmy4Hp466O0TDjldfpQrymrSmKrqYLzWT9yB5ybW3UFA-Sd13FkVanIdEZ1rvOOU-_nm/s1600/A918D6C9-0F23-4318-9D6B-A4AF184D5DB7.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="149" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhg-aB5YZeeccDV8BZuaXfWlpGx10zP7FaY3EYhaWQvU6sxHBOmFuoMXcB6R5QKJmIr1bxftOCaFmy4Hp466O0TDjldfpQrymrSmKrqYLzWT9yB5ybW3UFA-Sd13FkVanIdEZ1rvOOU-_nm/s200/A918D6C9-0F23-4318-9D6B-A4AF184D5DB7.JPG" width="200" /></a></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjAAqlZLpIjM_T8bbK9oJwkxqjsIzeVIV5V-oUNG2jwmb0Q0DfkvRnYs8hVXYVoAL4RT9CpNw6hgdWZ-SLk1KBvmGtAbhrBdDt391DDmxoZISP-DnsWRp93IHoBfWq65bLmQV-X1p-OYSw/s1600/5D91A33A-7BD2-4295-890E-38D8E57504F5.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjAAqlZLpIjM_T8bbK9oJwkxqjsIzeVIV5V-oUNG2jwmb0Q0DfkvRnYs8hVXYVoAL4RT9CpNw6hgdWZ-SLk1KBvmGtAbhrBdDt391DDmxoZISP-DnsWRp93IHoBfWq65bLmQV-X1p-OYSw/s200/5D91A33A-7BD2-4295-890E-38D8E57504F5.JPG" width="149" /></a>On a positive note, we received Jake's chest scans back from the Pediatric Cardiologist. Happy to share there is NO MASS!! Hip Hip Horray!! Jake overall had a good, healthy Cardiology appointment. His ECHO and EKG looked good. He wore a event heart monitor- we are still awaiting final report, but am assuming no news is good news. The cardiologist believes most of Jake's chest pains come from his severe costeochronditis. We were well aware Jake has severe costeochronditis and has had it severely from initial diagnosis. What we did learn is that Jake has a chest deformation, called <i><b> Pectus Carinatum.</b></i> Pectus carinatum occurs when the cartilage of the ribs and breastbone (sternum) undergo excessive growth, causing them the sternum to protrude. It may worsen when Jake has growth spurts or becomes a adolescent. There are basically two options to treat this as Jake gets to be in his early teens. 1) External Bracing 2) Surgery. We are certainly going to pray that Jake's deformation does not progress over time and that he is not bothered by the appearance and can remain active without further issues. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOeA4VLlwRB3pi1SQcPcE8Mm2tfE14YPG4hMdnDP_gqmATjwYi-SUgtxBbh5PgY-ktaaCW9-a2qs8xV4gUXtZRjON_XIVz-et_9BbfTRt0MzAOvbu2ViVBkc7m0inGvP1oSmBzyTpH-Unh/s1600/blogger-image--1434254520.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOeA4VLlwRB3pi1SQcPcE8Mm2tfE14YPG4hMdnDP_gqmATjwYi-SUgtxBbh5PgY-ktaaCW9-a2qs8xV4gUXtZRjON_XIVz-et_9BbfTRt0MzAOvbu2ViVBkc7m0inGvP1oSmBzyTpH-Unh/s320/blogger-image--1434254520.jpg" width="280" /></a></div>
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Our family will continue to pray for a CURE and support the Arthritis Foundation. Our dream is to find a cure and much better medications to treat these monster autoimmune diseases that affect so many children and adults. Thank you for those of you who have donated to the Arthritis Foundation or are walking this month to support my kiddos! Anonymoushttp://www.blogger.com/profile/13405391515898480443noreply@blogger.com10tag:blogger.com,1999:blog-7195400996232158116.post-79227103748058434902013-04-15T22:20:00.000-07:002013-04-16T05:28:59.825-07:00We Choose JOY!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigtqP0rz8FvpnTI-NtuQlQrbnBiChwTxwvLSgi6azebUot_1kQlcWoOIYSzyE4R4uStQZj7jXwBH32riTLqLR5x6_Ueh-lGNipmPkdhMy1Bd_KlF0idfewKj8jCza3Orwyq1YCg1e1Rz_e/s1600/photo+1.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigtqP0rz8FvpnTI-NtuQlQrbnBiChwTxwvLSgi6azebUot_1kQlcWoOIYSzyE4R4uStQZj7jXwBH32riTLqLR5x6_Ueh-lGNipmPkdhMy1Bd_KlF0idfewKj8jCza3Orwyq1YCg1e1Rz_e/s320/photo+1.JPG" width="212" /></a></div>We are almost at the point where we were a year ago when our plans came to a quick halt and I begin to put other things in perspective and count my <i>Blessings</i>. I am thrilled to share my mom has completed her surgeries and treatment from her second round of breast cancer. We choose to stay in FL and postpone our move to TN to be support for my mom. She amazes me and am so PROUD of her and her bravery. So... Here we are again approaching the BIG MOVE to TN within a few weeks.<br />
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It's been awhile since I've shared the latest and the greatest of this crazy disease. Sometimes I need time to process, accept and find the strength to push forward and continue to find<i><b> JOY</b></i> in our lives. Other times, I think why share? But I do understand by me sharing our experiences, it has helped many families along the way who are also faced with making similar treatment decisions for their child and trying to understand this crazy disease.<br />
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<div class="separator" style="clear: both; text-align: center;"></div>Last year, I traveled 9,866 miles on the highways for medical treatments for Jake and Hannah. There isn't a place on this Earth I wouldn't travel to IF it could take away their pain and allow them to simply be a child. We have been fortunate to have excellent team of specialists and we trust they are doing anything and everything possible. The disease simply has a mind of its own and I have learned to simply find <i><b>JOY</b></i> everyday and count my Blessings. We have had many great outcomes and healthy reports throughout the past several months and we are ever so grateful. ( Healthy eyes, weight gain and continual growth, healthy heart reports, fewer fevers, healing broken bones, skin infections resolved, good labs and much happier days) In between those happy days, we certainly continue to be reminded of this monstrous disease it affects our family. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidVYATlOELVFJgsPV71AICtljpdN5stceG6fdfMIcTnb7tsy9NgwW8L7UvS99ZpyyOfbZ9TPYBvfCdAkXOraeIidw_vLk010AR5MkxLkB9eUv4AH8_xjTD7Oyjjk9irjTpbrA_yH1bydNX/s1600/photo+5.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidVYATlOELVFJgsPV71AICtljpdN5stceG6fdfMIcTnb7tsy9NgwW8L7UvS99ZpyyOfbZ9TPYBvfCdAkXOraeIidw_vLk010AR5MkxLkB9eUv4AH8_xjTD7Oyjjk9irjTpbrA_yH1bydNX/s200/photo+5.JPG" width="133" /></a></div>Within the past few months, Jake and Hannah were both put on a second biologic- combined with their bi-weekly Actemra and Solumedrol infusions. It wasn't exactly successful for either of them, and honestly just more stress in our lives. Hannah added Rituxan in November, but had reactions to treatment while being infused and required overnight admission. Then, 14 days later, she got another loading dose of Rituxan and also reacted and was admitted again to Shands Hospital. We have choose to delay her Rituxan dosages and reevaluate with physician. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjM-03mVopk-mSJqvg5Wh5GB_QqMgwXLo12fBH81n0qS9VYd317I3M_U7T_qkJZBhQsf9NhQxwOHMug5-VrXsPmHdtCfRNPDYfK7mbX19p2lMKN0nFaeaDe7q_3-SmlrfcHiyqjhU1JDq23/s1600/photo+6.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="86" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjM-03mVopk-mSJqvg5Wh5GB_QqMgwXLo12fBH81n0qS9VYd317I3M_U7T_qkJZBhQsf9NhQxwOHMug5-VrXsPmHdtCfRNPDYfK7mbX19p2lMKN0nFaeaDe7q_3-SmlrfcHiyqjhU1JDq23/s320/photo+6.JPG" width="320" /></a></div> In January, a miracle happened and we were able to get Jake approved for Rilonacept- an IL-1 inhibitor. This medicine is very expensive and not approved yet with FDA for children with JA. Our awesome doctor was persistent and able to get it approved under a different diagnosis due to Jake's frequent fevers. Jake absolutely HATED these shots and cried every Friday night. You'd think through the years he'd adjust to shots, but he HATES shots. After 8 shots, insurance decided to deny any further Rilanacept without the diagnosis of CAPS ( Cryopyrin Associated Periodic Syndromes)and he couldn't be on 2 biologic's at once. We were aggravated with insurance to start a new drug then stop it suddenly, but Jake was THRILLED to toss the $28,000 shots. Within the same time frame, our insurance also decided massages are no longer covered. The kids recently had a slight change in anti-inflammatory's- switched from Celebrex 200mg 2x daily to Tolmetin 200mg 3x daily. Other than these med changes- they both continue to receive Actemra and Solumedrol every 14 days at Shands. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR87KyjQ51GjyftJg32h1v-KbZh-crlq3vl3CEsq8JFtuoJs9HqGRmPG2nE7zFzFTmh237DwcyMqDTKbT8L4OjjLMz8H4XaQgVTBjybOaqVVAPn_T0MEAfh5eQa4hiP8XzH_Gl6Fjbarb7/s1600/photo+13.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR87KyjQ51GjyftJg32h1v-KbZh-crlq3vl3CEsq8JFtuoJs9HqGRmPG2nE7zFzFTmh237DwcyMqDTKbT8L4OjjLMz8H4XaQgVTBjybOaqVVAPn_T0MEAfh5eQa4hiP8XzH_Gl6Fjbarb7/s200/photo+13.JPG" width="149" /></a></div>In January- Jake had another round of bilateral jaw injections with arthrocentesis. The surgeon removed a unbelievable amount of fluid ( 300+ml -left and 200+ml -right) . He awoken from anesthesia to learn that he couldn't barely swallow or talk without gagging due to tube used for sedation. What really happened with anesthesia- we'll never know?? Unfortunately, Jake lost 7-8 pounds post his jaw injections/surgery.<br />
Jake doubled his periactin immediately and did everything to stop weight loss and increase po intake. The worse part of it all- these injections barely brought any relief for Jake and insurance left us with a BIG $bill$.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRgPzLyhJwSPpbQzWo71YwT6FaXjYTBlXRvSWNJknyxh6DVpc3BkuqcKrAHWKL8dVBHITVNbzRWT30hd2ofgxK4p9UF7EFyZhzY_puGtVk21jezOXjxrF6loAuRy1bDNQPS2nibkgx6VJR/s1600/photo+17.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="149" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRgPzLyhJwSPpbQzWo71YwT6FaXjYTBlXRvSWNJknyxh6DVpc3BkuqcKrAHWKL8dVBHITVNbzRWT30hd2ofgxK4p9UF7EFyZhzY_puGtVk21jezOXjxrF6loAuRy1bDNQPS2nibkgx6VJR/s200/photo+17.JPG" width="200" /></a></div>Good news- Hannah's collarbone finally healed and she didn't have surgery. She broke her right clavicle in TN playing on our playset in November. It was a bad break and we got very mixed opinions from her doctor's and orthopedic specialists. Disease, medications and steroid use for the past many years didn't help the healing process. We were pleased that after 13 weeks- it finally healed and causing Hannah no problems. She was a happy girl to fling her swing and return to dance with her friends and back on Twiggie for Horse Riding Lessons after 3+months.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjneSjrtgB1Dgh971BnJUB4vbwU_gFiUrwu44JtfpO746yRHhBykoc2gG_dY-Lc67d2bpcR3zaY44aNLjiSE8SnU0hsEX6nAxhm_vcSDnUyAJOf8vHl1h8IJljHyYARDOuYD22krNCyuAOt/s1600/photo+9.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="149" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjneSjrtgB1Dgh971BnJUB4vbwU_gFiUrwu44JtfpO746yRHhBykoc2gG_dY-Lc67d2bpcR3zaY44aNLjiSE8SnU0hsEX6nAxhm_vcSDnUyAJOf8vHl1h8IJljHyYARDOuYD22krNCyuAOt/s200/photo+9.JPG" width="200" /></a></div>Jake recently had a Gastric Emptying Scan at Shands. We are awaiting results- but am hopeful no news is good news. He did really well eating the radioactive egg breakfast, then laying still for 90 minutes while they watch at how quickly food leaves the stomach and enters the small intestine. Jake continues to have frequent diarrhea, episodes of vomiting, weight loss and overall no appetite. Am pleased to share he has worked hard at eating within the past few weeks and has gained weight that he had lost post jaw injections. YEA!!<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAm0LkWru-rDEhBps4S5LmU8ZQmKv7wlfV3fVgzbzVl5FKzKh33oeQBxd2cCyzuQh9LNFIKMFdeSJh4DTKXpgSbd1wAY4M_HRDjf6PKXeFaPr1UQRoThk_TpD9pMzGOaSEaeYGh60Y_Txt/s1600/photo+14.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="148" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAm0LkWru-rDEhBps4S5LmU8ZQmKv7wlfV3fVgzbzVl5FKzKh33oeQBxd2cCyzuQh9LNFIKMFdeSJh4DTKXpgSbd1wAY4M_HRDjf6PKXeFaPr1UQRoThk_TpD9pMzGOaSEaeYGh60Y_Txt/s200/photo+14.JPG" width="200" /></a></div>If we didn't know already, Hannah has a healthy heart. We are relieved to know that she just has sinus arrhythmia and costeochronditis. Her cardiologist feels as Hannah flares, her heart over works and creates rhythm changes. Her past two EKG's and heart ultra sounds indicate no cardiac concerns. The heart monitors worn in the past did pick up irregular rhythms, but nothing to indicate the heart isn't functioning to capacity. She will be continued to be followed by Cardiologist and will continue to pray that her heart remains healthy. Jake will see Cardiologist this week- hoping he gets a similar, healthy report. <br />
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The news that I have had lots of time to process is that Hannah has now been classified and re-diagnosed to <i><b>Juvenile Ankylosing Spondylitis</b></i>. This should not of been a surprise to me, but just not what I wanted to hear. Hannah has had new areas of pain and includes involvement of her tendons and ligaments. It doesn't change treatment plan, just added new areas of concern. Nothing good to say here-- we just continue to hope for better days and that God will hear our prayers. Every prayer spoken, every penny we toss, every wish we make.......<i> We always have that one wish! </i><br />
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Within the next several weeks, we are having to say our good byes to many friends and medical staff, and even horses who have been such a significant part of our lives. Last weekend, our family was able to spend one last weekend at Camp Boggy Creek with many of our JA Families. I'm trying to remember what they say,<i><b> " We Don't Say Good Byes , We Say See You Later".</b></i> As we transition to TN, I know there is JOY awaiting for my family, new friendships will be made and these relationships with Arthritis Foundation, JA Families and medical staff throughout FL will always be cherished. <i>For all our friends, family and JA supporters,<b> we'll see you later. </b></i><br />
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Anonymoushttp://www.blogger.com/profile/13405391515898480443noreply@blogger.com3tag:blogger.com,1999:blog-7195400996232158116.post-48565980707250304362012-11-03T20:47:00.001-07:002012-11-03T20:50:58.351-07:00NEW DIAGNOSIS, BUT NOT SO NEW DISEASE ACTIVITY....<br />
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Thought it was about time to share with those friends and family who keep our children in your prayers and follow <i>The Sloan Siblings Journey.</i> About 6 weeks ago, we were informed by Jake's Pediatric Rheumatologist at Shands Hospital that he has a new diagnosis....... <i><b>Juvenile Ankylosing Spondylitis. </b></i>It has taken a few weeks for us to process this information, learn about the disease and prepare ourselves as how we are going to help Jake manage this complicated, chronic disease, that yes, children can get, too! <br />
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We thought Juvenile Rheumatoid Arthritis- Systemic type with Polyartiucular features was a mouthful for Jake. Now.....he's got new vocabulary words and more than a 10 year old should ever have to accept and learn to cope with. We have not shared all the facts with Jake yet, but he is aware of his new diagnosis, MRI findings and understands this disease primarily focuses on his spine. <b>Juvenile Ankylosing Spondylitis (JAS)</b> <b>is basically a systemic autoimmune disease affecting the joints, heart, lungs, bowels, kidneys and eyes</b>. It is a painful, progressive type of arthritis that aggressively affects the spine and large joints. Although it can affect any joint, more common joints include: hips, knees, ankles, toes, ribs and jaws. The heels may also be affected(Iachilles tendinitis and Plantar fasciitis), making it uncomfortable to stand or walk on hard surfaces. Inflammation in JAS also occurs in the areas where muscles, tendons, and ligaments are attached to the bone. To help break down the word, "Ankylosing" means stiff or rigid, and "spondyl" means spine and "itis" refers to inflammation. Over time, the joints and bones may grow together ( fuse), causing the spine to become rigid and inflexible. These fused bones are brittle and vulnerable to fractures. The lower neck is the most common area for these fractures. Bones in the chest may also fuse ,causing breathing difficulty, and limits lung capacity. The fusion of the spine can lead to a forward curvature of the spine, a forward-stooped posture. Complications from the disease varies from each child, and JAS does not follow the same course in everyone. <br />
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Jake's new diagnosis still shocks us and I tend to try to figure out 'why"?? Juvenile Ankylosing Spondylitis is to be considered a multifactorial condition, meaning that "many factors" are involved in causing it. There is no known way to prevent JAS. The factors are usually both genetic and environmental, where a combination of genes from both parents, in addition to unknown environmental factors, produce the trait. It is also highly associated with the antigen/protein called HLA-B27. JAS strikes young people, typically between 17 and 35 years old and more common to affect males ( 2-3x more common with males than females).Our family does not have any genetic role (nobody diagnosed with AS) and Jake was not born with the HLA-B27 gene. So I often ask, why, why Jake?<br />
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Some of the early symptoms of juvenile ankylosing spondylitis include:<br />
(However, each child with JAS may experience symptoms differently and the severity of symptoms and disability vary from each child.)<br />
<ul>
<li>back pain, usually most severe at night, during rest</li>
<li>early morning stiffness</li>
<li>stooped posture in response to back pain ( bending forwatrd tends to relieve some pain)</li>
<li>inability to take deep breath ( when joints between ribs and spine are affected)</li>
<li>appetite loss</li>
<li>weight loss</li>
<li>fatigue</li>
<li>fevers</li>
<li>anemia</li>
<li>enthesitis ( pain at the site of attachment of muscles, ligaments and tendons to bone)</li>
<li>joint pain</li>
<li>vague pain, usually in the buttocks, thighs, heels and shoulders</li>
<li>painful eye inflammation</li>
<li>organ damage, such as the heart, lungs and eyes </li>
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There is no cure for JAS, and the course of the disease is unpredictable. It is often said that when a child is diagnosed with JAS, it usually results in a much more severe disease than adult onset of AS. .The children who have JAS have a worse functional outcome (in terms of work disability, functional impairment, quality of life, and spinal involvement) compared to adult onset of AS. Treatment for Juvenile Ankylosing Spondylitis is individualized but overall the goal is to reduce pain and stiffness, prevent deformities, and to help children like,Jake, maintain as normal lifestyle as possible. Educating ourselves and appropriate mild exercise is very important. Swimming is ideal,as it avoids jarring impact of the spine. Exercise programs designed by physical therapists with regular back and chest exercises are crucial to help improve posture, spine mobility, and lung capacity. Hot baths, heat and massages are also beneficial. We are very thankful for Jake's gift of his hot tub from Make-A-Wish Foundation. Jake continues to get weekly full body massages from Ms. Patrice. ohhhh......we just can't begin to say enough wonderful things about her. Jake would go everyday, if he could. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOIpssFRV1X6CfTpyQzLpjFII5c9mWmpb4f6uNdR3luGBh5xPhBGj2H5BuFCYrRFW4HwEo1NydIlx1F3QgHNuAjP4gyrsTL0ZAdReAgOBiBA5hGI2-PntNG8ShbJKJpG5ym-rChbql1gFa/s1600/img_2877.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOIpssFRV1X6CfTpyQzLpjFII5c9mWmpb4f6uNdR3luGBh5xPhBGj2H5BuFCYrRFW4HwEo1NydIlx1F3QgHNuAjP4gyrsTL0ZAdReAgOBiBA5hGI2-PntNG8ShbJKJpG5ym-rChbql1gFa/s320/img_2877.jpg" width="320" /></a>Non-steroidal anti-inflammatory drugs may provide pain relief and decrease morning stiffness, however do not alter the course of the disease. With taking these meds routinely, it can also cause stomach upset, nausea, abdominal pain, diarrhea and bleeding ulcers. Jake has been dealing with these GI issues for a very long time, even after stopping Methotrexate. For those children like Jake who is unresponsive to anti-inflammatory meds, the use of biologic agents {TNF ( tumor necrosis factor) blocking medications}, such as: Enbrel, Humira, and Remicade are necessary part of treatment. Unfortunately, Jake has been on all of these biologic' s and has continued to fail and not respond in treating his disease effectively. Jake and his sister, Hannah, have both been on Actemra bi-weekly infusions for the past 16 months. Actemra was the newest biologic approved by the FDA and is a IL-6 receptor drug. Unfortunately, it has lost it's effectiveness and Jake is no longer responding to it as he had in the past. His fevers are back almost every evening, multiple joints are inflamed and he literally has joint pain in EVERY joint in his body { toes (sausage toes), ankles, knees, hips, back, neck, shoulders, elbows, wrists, fingers, jaws and ribs}. Jake's recent cervical MRI showed "thickening", and his doctor believes it's been there for awhile. It is time to try another drug, but there is nothing new available to try. This is what is so hard to accept.......the disease is not being controlled and we have ran out of options at 10 years old. As of today, we are TRYING to get Rilonacept (IL-1)approved as a "Fever Syndrome " medication. {It is currently in a closed study- treating Systemic JA.} We are unsure if insurance is going to approve this medication, but we got <b>HOPE</b> on Friday that it just might be a option! Praying hard and anxiously awaiting for a updated phone call from Shands. Jake will not stop any of his current medications, he will be adding Rilonacept weekly as a second biologic . This scares me too! For those of you who understand the risks involved in using biologic' s, and the "Black Boxed Warnings" and the lovely side effects of these drugs, especially when used with combing TWO biologic' s....... I won't even begin to express my concerns and worries there..... I am fully aware of the serious conditions/infections they can lead to, and even death. I have had a lot of restless nights and heavy heart trying to process our upcoming changes to control these monster diseases! Hannah is adding a second biologic- Rituxan this Wednesday, despite her re-occurring impetigo/staph infections. Her cardiologist gave the approval to go ahead and proceed with new treatment plan.{ Rituxan aims to help stop the activation of a certain type of white blood cell- called B cells. With fewer B cells, the over-activity of the immune system deceases}.<br />
So..... we are adding a second new biologic for both Jake and Hannah and praying to get more control of these diseases with no serious infections or problems. Trying not to give up HOPE! <br />
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<tr><td class="tr-caption" style="text-align: center;">Jake keeps going - pushes through his pain & challenges everyday! </td></tr>
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Not much more to share, new fancy name (<i><b>Juvenile Ankylosing Spondylitis</b></i>), but this name didn't change how Jake has been feeling or change his treatment plan. Sometimes it takes a long time to see how disease progresses and to watch for patterns. Unfortunately, JAS is difficult to treat, but we know we are in good hands at Shands and ultimately God is in control. We never give up Hope that God will completely heal Jake and Hannah. Until then, we only do what we know to do and try to make everyday special! <br />
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Thank you for taking the time to learn a bit more about <b>Juvenile Ankylosing Spondylitis</b>. It's a learning curve for us, and we will continue to support the Arthritis Foundation. As Jake and Hannah and the other 300,000 children need better medication options and a cure! Our family appreciates the prayers and the support.given by those in our lives! Anonymoushttp://www.blogger.com/profile/13405391515898480443noreply@blogger.com12tag:blogger.com,1999:blog-7195400996232158116.post-72939283374098766502012-10-04T20:38:00.001-07:002012-10-04T20:38:39.469-07:00It will all be ok in the end.....For the past few months..... <i><b>we've been trusting that all will be ok. </b></i>Our family had a bump in the road, as we like to call it and have been focused on helping my mom beat breast cancer. We've been thinking positively <span style="color: magenta;"><b>PINK</b></span> since May and am happy to share my mom is beating her second round of breast cancer. <br />
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Briefly, while my parents came to FL to watch all their granddaughter's dance recital in May, my mom had her annual mammogram. A suspicious lump was found and it's been a hard road since that day. My mom is a breast cancer survivor of 22 years, so to go down this road again.... was just frightening. She had a double mastectomy in mid-July and is still gaining her strength and getting prepared for next phase- reconstruction surgery on December 5th. Our family was fortunate enough to still be in FL and just shy of 2 weeks from moving to TN. Trusting God that he had a different plan for our family to move... We wouldn't trade our time with Grandparents for anything.... Hannah and Jake have both been a huge support in my mom's recovery! <br />
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<tr><td class="tr-caption" style="text-align: center;">2012 JA Conference </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Happy Campers at Camp Boggy </td></tr>
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Our summer was busy and flew by so quickly. There were days I didn't know if we were coming or going. We managed to take brief trip to TN to bring back a few necessary items and clothing and close up our TN home. A week at Camp Boggy Creek and the annual JA Conference in St. Lious was Jake and Hannah's summer highlight. The friendships that are made at camp and conference are priceless. Their isn't a day that passes that we don't talk about our new friends, send cards, emails, and facetime each other to keep in touch until next gathering. Before we could barely blink...it was time to get back into the groove of school.<br />
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Back to Fall was a simple transition.... no stress on changing physicians or getting to know new community or finding a new church home. We are continuing homeschooling Jake and Hannah through Polk County Hospital Homebound program. It has really worked great for our family and appreciate the time and effort our assigned h/h teacher has provided for Jake and Hannah. Hannah has really flourished in 2nd grade and Jake continues to LOVE to learn. They are a joy to homeschool and I wouldn't want it any other way.<br />
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We are disappointed to share that Jake and Hannah both are finishing up their final infusions of Actemra. They both have been getting Actemra infusions every 14 days for the past 15 months. It has not been a perfect drug, never experienced remission or close to it, but did certainly help to manage their disease in some ways, along with other modalities of treatment. We have tweaked it as much as possible, adding second Biologics (Enbrel), joint injections, maximizing dosages, and increasing steroids. We have been told....Actemra has lost it's effectiveness after antibodies built up and it simply is no longer effective for Jake and Hannah. I knew this in my heart..... Jake's fevers have returned almost every evening. Jake and Hannah both have inflammation in many joints ( toes/knees/wrists/fingers/chest/ ankles). I often hear complaints about achy hips, shoulders, backs,jaws and NECKS! Last month was a hard day.....while both kids getting infusion, MD shares they have both failed Actemra and it was time to move on and try something else ??<br />
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<tr><td class="tr-caption" style="text-align: center;">Actemra infusions coming to an end.. wish there was more drug options.</td></tr>
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Changing drugs is so hard..... Unfortunately, there is nothing else NEW for Jake and Hannah to try. I hate that we have exhausted all the current drugs available and now grasping at whatever.... So we have a tentative plan to go backwards and try a combination of two biologic's and wait and see.... Not really sure which drugs it will be.... Dr. S is TRYING to get Jake approved on a type of drug ( Rilonacept) that is currently in a closed drug-study and not yet approved, but hoping because of frequent fevers it can be approved as a fever syndrome drug. Possibly trying it as a combo with Rituxan infusions, as well. The final decision will be made next week pending insurance approvals and review of Jake's cervical MRI report.. We were also told that Jake very likely has ankylosing spondylitis- Systemic type. I have not digested this info yet-- not at all! Even the thought of his spine fused together and then add it can affect all his organs. I'm trying to tell myself, it will all be ok in the end. But with this type of disease.....when does it ever end??? The good news is that Jake is finally gaining weight and less episodes of throwing up. He has gained 7-8 lbs this summer and we couldn't be happier with his weight gain! <br />
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<tr><td class="tr-caption" style="text-align: center;">Hannah's impetigo spots. </td></tr>
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Hannah will also be having med changes, just not sure when and what? Hannah has been battling nasty impetigo with staph infection for past 9 weeks. She has been on 3 different ATB's as well as applying bactroban cream on affected spots. Just when you think it's gone.....the nasty spots return. The infectious disease doctor doesn't want Hannah to have any med changes until we know for sure this is cleared up and really gone! Who would ever imagine....a small bug bite would create all this. It's no big deal for the average kid to get-- but Hannah has such a compromised immune system and being on two biologic meds don't help any. She also needs to have final clearance from cardiologist before med changes can occur. We are pleased to share her heart ultra sound was good. Her EKG's and heart monitor readings do indicate sinus arrhythmia, but nothing alarming. Hannah will be finishing up wearing her second 30-day heart monitor next week. Not sure if we know what causes her "heart episodes", but seems to come with flare up's?? So it was discussed that we may try Rituxan and Oriencia for Hannah. ugh...... two biologic IV meds. It was also discussed to consider maybe trying IVIG. That's three NEW IV meds-- plus Jake's two new IV meds! Needless to say-- I've been a little worried about the upcoming changes and how it will affect Jake and Hannah. <i><b>Reminding myself, it will all be ok. </b></i><br />
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Due to the recent outbreak of meningitis linked from steroid injections, I'm going to hold off on any joint injections for Jake and Hannah. Dr. S asked if we could use ultra sound and maybe inject joints that are needed next visit. I'm going to wait--- don't need that extra worry right now. Jake is scheduled to have his jaws re-injected in about 2 months. We aren't using steroids this time, going to try something new, Remicade. <br />
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<tr><td class="tr-caption" style="text-align: center;">So as I process this crazy disease that doesn't stop, I remind myself, it will all be ok. </td></tr>
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<br />Anonymoushttp://www.blogger.com/profile/13405391515898480443noreply@blogger.com7tag:blogger.com,1999:blog-7195400996232158116.post-44849843851276546322012-04-18T21:16:00.002-07:002012-04-18T21:16:45.398-07:00The Latest & Greatest with Sloan Siblings...<div class="separator" style="clear: both; text-align: center;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhOdgUHhzw04_kzD6T6sS8dPFZ3fCIh7_oYaRH2qLR8YlZQB7rznfPLD4GPt-MZhtlm0Qxs64XTdX3YM4CSEPp5PP1Tm0h9NvNoog9v_JxlxgQJ8IDVjZo8KbrujPs-BW5X5DwPCPlOk9x/s1600/Copy+%282%29+of+IMG_9551.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhOdgUHhzw04_kzD6T6sS8dPFZ3fCIh7_oYaRH2qLR8YlZQB7rznfPLD4GPt-MZhtlm0Qxs64XTdX3YM4CSEPp5PP1Tm0h9NvNoog9v_JxlxgQJ8IDVjZo8KbrujPs-BW5X5DwPCPlOk9x/s200/Copy+%282%29+of+IMG_9551.jpg" width="133" /></a>So>>> I jumped with my excitement about "dumping methotrexate" and within minutes of posting on Facebook....I received many private messages. Arthritis friends from all over wanted to know if kids were in remission, why did we "dump Methotrexate"? Neither Jake and Hannah are anything close to remission. I simply needed them to have a break of feeling like CRAP for 2-3 days after EVERY Methotrexate shot EVERY week. It was already on my notes to ask doctor if we could decrease dosages...but as he explained there isn't much more we can do for mouth/nasal sores but swish water in mouths and add folic acid daily. Then he noticed Jake is thinning and losing hair. I just said, " I'm ready to "dump Methotrexate" . This isn't the first time I've dumped MTX. We took Hannah off Methotrexate for about 2 years because she was vomiting week after week and so sick! We never saw a difference either way- on methotrexate or not. At least now I don't have to expect headaches, tired, nauseous, vomiting, no appetite and feeling like total crap from a medication! So for those of you are in awhhhh that I did it...... I simply needed a break for Jake and Hannah and entire family. I'm sure kids will be back on it one day, but for now we are celebrating and happy dancing that "methotrexate is dumped" for the time being. I apologize if I got some of you concerned or worried that I'd discontinue a medication without doctor's recommendation.....but they'll be ok and ENJOY the break! <br />
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<tr><td class="tr-caption" style="text-align: center;">Jake loving his "Wish Spa" from Make A Wish. </td></tr>
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Jake's jaw injections were delayed due to surgeon had to cancel due to a personal emergency. It is now scheduled in 2 weeks- April 30. Jake will also be having 5 teeth extracted at the same time while under anesthesia. We are hoping it will bring Jake relief and improve his jaws and increase his appetite. The surgeon has talked to Jake and I about him needing jaw surgery as he gets a little older. It would involve them removing one of Jake's ribs and replacing it with his jaw. The good news is arthritis doesn't seem to attack the new "rib-jaw". But that's down the road.....we are wanting to buy as much time as possible so he can continue to grow. Surgeon has asked us to keep the aggressive treatment and hoping injections bring relief. Just don't know for how long????<br />
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We are still are struggling with Jake's weight. He has not gained any weight in 2 1/2 years but has grown in height. He is getting thinner and thinner and losing muscle mass. We have tried a few simple approaches; shakes, protein pills, extra vitamins and encouraging high calorie, fatty foods. Jake continues to have diarrhea daily and throws up here and there and his appetite is up/ down.We were thrilled Jake's upper/lower scopes were good and only indicated he is lactose intolerant through his GI work up. Jake has had additional liver tests after a few liver levels were abnormal. He has been referred to a pediatric endocrinologist at Shands Hospital. We are trying to put our finger on if it's just the disease itself, medications or something else ( liver related). Jake is back in Physical Therapy and aquatics 3x weekly. He was disappointed today to see he has lost 2 lbs. and Mom has gained 5 lbs. I'm leading by example....food is good! lol <br />
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<tr><td class="tr-caption" style="text-align: center;">" Happy Hannah"</td></tr>
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Hannah...... HOPING her eyes are healthy with no cells. Today, her pediatric rheumatologist noticed her eyes??? She has a appointment in 2 weeks, but am calling in the morning to be seen ASAP. I DO NOT like the thought of eye involvement!! We tweaked Hannah's medications slightly today. We increased Celebrex to 100mg 2x daily, added folic acid daily to help with mouth/nasal sores, decreased Enbrel to 1x week, and increased solumedrol- steroids to 500mg. Ohhhh...and "dumped methotrexate". Hannah got orders to start physical therapy and aquatics. Her knees and wrists/ fingers were warm/swollen today when MD looked at her. He asked if Hannah is dancing? Then, recommended Hannah only dance one class and let it be the least impact on her joint. NOT-- Hannah has her 'Big Show" in a few weeks and would never quit at this point. I love her spunk....it carries her through most everything. She so enjoyed dance class last night, but then hopping throughout the house and crying in knee pain afterwards. Pictures show a happy girl.....but she hasn't been felling well lately. Discussed "steroid rages" with physician...... I'm thinking they need to give caregivers and siblings meds to COPE with these rages! My heart breaks for her..... Hannah has a endless heart, but boy O boy there are days I wonder if we both will survive! Hannah was hoping for the past week, we'd come home with a solution or prescription for her mouth sores that HURT badly. Disappointing..... but Mama bear helped by "dumping methotrexate". YEA!!<br />
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Nothing crazy going on, just same ole...... Jake and Hannah continue their weekly massages and LOVE them. Am supposed to be pursuing acupuncture.....haven't decided who to try locally?? Horse back riding lessons are FUN and gives kids something special to look forward to at end of each week. Just 3 more weeks until our family is participating in Tampa's Arthritis Walk. We have not been as involved as previous years.... not having it locally has been different and more challenging for me to recruit sponsors, donors, walkers. Time has been a issue too-- not enough hours in a day! Homeschooling continues to ROCK! There is plenty of time to register to walk with our family or make a donation. EVERY donation gives us HOPE for better medications for kids and HOPE for a CURE! Visit: http://awtampa.kintera.org/myjraheroes. No matter where you live across the country- there are local Arthritis walks happening in May. Hope there are a few more walkers across the country taking the time to walk and think of these 300,000 children who deal with arthritis everyday and need a CURE! <br />
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<br />Anonymoushttp://www.blogger.com/profile/13405391515898480443noreply@blogger.com6tag:blogger.com,1999:blog-7195400996232158116.post-79629337596192144232012-04-18T19:16:00.000-07:002012-04-18T19:16:10.512-07:00Sloan Siblings Receive A Gift of Hope.....<div class="separator" style="clear: both; text-align: center;">
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Ten months ago, I opened my mailbox to read a packet from <i><b>Make-A-Wish</b></i> <i><b>Foundation</b></i> that Jake and Hannah both have been invited to make a special wish..... It was such an emotional experience to read that both of our children are able to make a special wish just for themselves. Some people think Make-A-Wish is just for children who are terminally ill, but it also includes children who have life threatening chronic illnesses. Jake and Hannah are receiving a gift of <u><b>Hope</b></u> and they so deserve a chance to renew their courage and determination to fight JRA! For a moment I cried and thought how do I actually have two children who qualified to receive such an amazing dream.<br />
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Last June, as I briefly explained "Make A Wish" to Hannah and Jake and this once in a lifetime opportunity. Hannah thought of only one dream, one wish! <i><b>It was to take away our dear friend, Jeri's cancer and to heal him.</b> </i> If I wasn't crying before...I sure did at this point. I explained to her that this was different...she was able to pick somewhere she always dreamed of going, or wished to have, or be, or meet someone special. She insisted that her wish was to take away Jeri's cancer. Hannah and Jake share the infusion room at Shands Hospital with children who are like themselves and others who have cancer. These children are all their friends and they understand it more than most adults understand. So to Hannah she wanted Jeri to be healthy and not have to endure treatments like she does and other children do. Bobby and I had many conversations with Hannah to try to convince her she can be selfish, just this onetime and pick a wish just for herself. <br />
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Jake and Hannah had 5 days to think about their wish. They had been asked to provide the wish granters (Miss Candy and Mr. Joe) with at least two wish requests. Jake did not surprise us with his wishes-- he has always asked us to think about getting a therapy pool. He loved the pool at LRMC and thinks it would be the best thing for he and Hannah to have an opportunity to swim everyday, with heat, jets and current control to continue to build his endurance. His second wish is a trip to Alaska. Yes- if you know Jake...you've heard about his plans for Alaska. Hannah on the other hand-- her wish list changes by the minute. It could possibly be an outdoor play house, a trip to a horse ranch or a vacation at the Amish Farms. She has even talked about a shopping spree, Disney cruise, bedroom makeover and even a horse for TN. The few days passed and Jake and Hannah shared their final wishes with the Wish Granters last June. <br />
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The months passed, Jerri continued his treatment. We laughed as the months went by and thought Jeri isn't done with his treatment, so wishes can't be delivered. Our biggest wish came true......Mr. Jeri Gable is cancer free. Then in early April, we received a call that Hannah's playhouse was being delivered and Jake Wish Spa was to be shipped in Lakeland on the same day. The pictures below say it all...... <br />
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Our family is beyond appreciative for Jake and Hannah's gift of HOPE! It certainly has been WONDERFUL to have the opportunity for both kids and my husband and self to enjoy the hot, bubbly spa! The waterfalls are a favorite of Hannah's. Jake likes the captain's chair and I simply enjoy every second of it! It has been used at least twice daily and feels great on our bodies! <u><i><b>Thank you donors, volunteers and staff at Make A Wish Foundation for giving Jake and Hannah a gift of HOPE.</b></i></u>Anonymoushttp://www.blogger.com/profile/13405391515898480443noreply@blogger.com3tag:blogger.com,1999:blog-7195400996232158116.post-21987030753595313622012-03-23T20:21:00.000-07:002012-03-23T20:21:47.458-07:00Don't Stop Believin......One of those weeks I questioned myself and wondered what has happened to our lives? After almost a 3 hour pediatrician visit- I asked " do we have a choice to dump all these medications". Then today, I read a newspaper article about a little 9 year old boy who choose to just be a kid and not endure anymore chemo treatments to fight his cancer. Even though he may have only 6 months left of his life- he choose to be a kid and live life for the remaining 6 months. As I read each of his comments, tears rolled down my face, as I have heard Jake and Hannah say each one of those things to me. Hannah has got old enough she is now verbalizing that she hates going to Shands, hates going to all these doctor appointments and is starting to give me a hard time about taking her medications. She begs me to help her neck and back pain to go away - it's driving her crazy! She has finally figured out the direct correlation as to why she feels so sick, headaches, loss of appetite and tired after she gets her weekly dosage of Methotrexate ( chemo drug). I am really questioning myself-- are we making the right decisions?? We TRY so hard to let our kids be kids and do anything they want. But their little bodies can only do so much somedays and those days are hard to sit back and watch! Methotrexate day sneaks up so quickly--- by the time she's back to feeling like herself, it's almost Methotrexate day again. <br />
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We have been aware of Jake's weight and been concerned about it for quit some time. However, we celebrate at any opportunity we get---and we are pleased that he is continuing to show growth in his height. Jake has not gained any weight over the past 2 years despite getting taller. One of his doctors has referred to him as" chronically ill-appearing, thin and has muscle wasting". His chest, wrists, arms, and legs are evident of losing muscle mass. He believes the active disease is causing the muscle wasting in Jake's body. We are working hard on building muscle and getting some weight on Jake. He's our healthy eater, LOVES all fruits and veggies. He has never liked cakes, cookies, ice cream or anything sweet! Plus, we recently found out Jake is Lactose Intolerant. So will have to be careful with dairy/lactose products so he doesn't have more diarrhea and vomiting than he already has! Let's hope Jake adds some weight and mom does NOT join in eating all these extra, high calorie foods. <br />
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Our family was able to attend <b>Camp Boggy Creek</b> for Spring JA Family weekend a few weeks ago. Awhhhh....it is literally the BEST place to escape. It's a Hole in Wall Camp and there is no place like it. We had an opportunity to meet many new families and connect with others from across Florida. Everything is so perfect there! One of CBC missions is to allow kids with chronic diseases to forget what they have and be a kid! We drive away with more determination to help find a cure!<br />
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<tr><td class="tr-caption" style="text-align: center;">"Riding for Therapy" at TIANVICA Riding Academy</td></tr>
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Today, Jake and Hannah started "riding for therapy" horseback riding lessons. It was touch and go all day if we were able to make it. Jake had a especially rough day. But by the Grace of God , zofran and a day of rest....... he was feeling LOTS better and thoroughly enjoyed his first riding lessons. It was incredible to see him smile and glow while sharing with me his first riding instruction. For those of you that know Hannah..... obviously she loved it! She's the girl who collects frogs & lizards and creates habitats and walks them on leashes. Am so ever grateful for people who have entered our lives in one way or another who truly MAKE A DIFFERENCE in Jake & Hannah's life! Thank you Roger & staff!<br />
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<tr><td class="tr-caption" style="text-align: center;">Jake's recent hospitalization due to unexplained fevers.</td></tr>
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Another week closer to helping Jake in getting relief in his jaws. Jake HATES his shots- but is actually looking forward to his jaw injections. Hoping & praying it brings relief for him. We're kinda in limbo as to his treatment. There has been discussion about stopping Actemra and going back on a previous Biologic and adding a second biologic and seeing what happens?? It scares me to switch drugs and go backwards just because there isn't anymore options in treating this monster of a disease. Jake is starting to get fevers again and Actemra may be loosing it's effectiveness ?? Jake had a recent hospitalization at St. Joseph's Children's Hospital due to unexplained fevers this month. Thankfully, port infection was ruled out and he didn't have any virus or infection. Assuming it's just his SoJA flaring- CRP was elevated, ect...<br />
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I go to bed tonight trusting in Him and remembering this sign at Camp Boggy Creek......<br />
<i><b>Don't Stop Believin. </b></i> <br />
Our family has so much to be thankful for, but it doesn't make it any easier to watch your kids in pain and feeling so horrible day after day! I am a bit overwhelmed with so many things weighing on my heart, and with the new year brings......MEDICAL BILLS galore!! Within a few days, Jake and Hannah are going to be presented with an amazing gift of HOPE! Simply because you may NOT understand the disease or visually see the pain and effectiveness of the disease with your limited exposure to Jake and Hannah-- certainly doesn't diminish the severity of SoJA. Thank you for those of you who have impacted my children's life and brought a smile and HOPE! And even you, Patrice..... Jake & Hannah really enjoy their massages and you are such a important person in their little lives! <b>We won't give up HOPE, We won't Stop Believin! </b><br />
<br />Anonymoushttp://www.blogger.com/profile/13405391515898480443noreply@blogger.com5tag:blogger.com,1999:blog-7195400996232158116.post-49247241192801957222012-02-22T21:00:00.000-08:002012-02-22T21:05:22.218-08:00Sloan Siblings ...... My Heroes!<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">What you don't see. Han dropping to floor, crying in neck pain.</td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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The Sloan Siblings continue to keep going everyday, put on a smile and pretend all is ok. We work so HARD to continue to carry a positive attitude and not be chronic complainers and be thankful for where we are in this journey. We don't have to look very far to understand things can be worse, much worse. But it still doesn't make our everyday struggles, simple or easy days. Then to have people in our life who simply don't get it at all, not even a tad bit! And even go as far as question Jake and Hannah and mom's mental status ( Munchhausen syndrome). This is what is heartbreaking and so FRUSTRATING! My kids are so much like me- why complain and moan and groan?? Who really cares and wants to hear about it constantly? We understand and appreciate people don't particularly want to hear about our day to day battles this disease has taken a toll on each of us, BUT please keep your ignorant comments to yourself or ask questions to better understand Jake and Hannah's day to day life living with chronic auto-immune disease.<br />
( ok so I can't seem to let it roll as easily as I had hoped. I will though.....)<br />
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Jake and Hannah continue to be Home-schooled through Polk County Schools with the Hospital Homebound Program. This is our first year in our public schools and a definite learning curve for us. We have a teacher who comes to the house twice a week for 1:1 instruction and leaves assignments in between visits.We supplement materials/ home school groups to assure our children our challenged and not learning at a slower rate because they aren't in a traditional classroom. We have no regrets and have no intention to change our academic program for Jake and Hannah. It is the perfect fit for Jake and Hannah and has proven to be a much healthier year for the Sloan Siblings. I truly enjoy my time with the kids and every time they throw up, get sudden fever, diarrhea or hyper after steroids treatment, or having a bad day....I am so Thankful Jake and Hannah are in their own home and we work around these obstacles. We move around the house/ furniture to do daily lessons, take hot baths in between, para-fan wax treatments for breaks and keep those heated blankets hot! We still don't have enough time to do the things we want to do. Our many out of town medical appointments seem to have to take priority week after week! After many months, academic testing, home observation visits, evaluations and physician orders written several times....we finally have a IEP ( orthopedic impaired and Hospital Homebound) for Jake and Hannah. It's just a piece of paper that was a lot of work for some, but for us it's a legal document that protects my children if we ever need to utilize it. <i><b> Halleluiah....IEP is </b><b>done! </b></i><br />
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<i><b> </b></i>I am so proud of Jake and Hannah. Jake has truly accepted his disease and knows he'll never be pain free. One night recently, he wrote this paper about him having arthritis. He has never written about how he feels living with JRA and keeps much of his feelings to himself. Hannah also shared with her dance teacher and dance friends about her having arthritis and shared pictures from previous blog entry's. WOW-- not sure how this all happened but am so proud of them both. When Hannah was first diagnosed, I was determined to make her feel ok that she has arthritis and its not something to be embarrassed or ashamed of! Now if they both can wear their splints without being embarrassed-- that would be incredible, too! Hannah has gotten over her hesitation to ride in the wheelchair on bad days. I actually think she enjoys getting all the attention from strangers-- my social kid has more opportunities to chit chat to others when strolling in her wheelchair. <br />
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<tr><td class="tr-caption" style="text-align: center;">Another infusion day!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Nothing a kid likes!</td></tr>
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Hannah and Jake are both receiving Actemra and Solumedrol every 14 days at Shands Hospital. They are both at maximum dosage and taking it with other agents ( Celebrex, Methotrexate, and Enbrel). It has continued to show signs of working ( fewer fevers, fewer rashes, labs improved). Just wish their joint pain was better managed. It must be rotten to hurt from head to toes everyday of your life despite what medications taken, therapy, rest, exercise. weather. Jake's jaw has been his hot spot recently. His chosteochronditis never seems to go away. Some days are more frequent chest pains than others. Hannah's neck and back is driving her crazy! Joint injections are still holding up although there is more wrist and knee pain/ inflammation recently. We are hoping Actemra will continue to bring good results and not bottom out as it has commonly lost its effectiveness after 6-9 months of treatment. Jake and Hannah are completing 8 months of being on Actemra every 14 days. <i><b>Another......Halleluiah</b></i><br />
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Jake is finally scheduled for TMJ joint injections, but not until April 6th. It breaks my heart to watch him maneuver his jaws to allow it to pop and unlock. Or shoving a plate aside and tell me he can't eat until his jaw pops or releases. He is not anxious about these injections- he is counting the days and praying for RELIEF!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicqZi0sxIamBCJV-7Wciqyxhn9AKLs37vEu_j6X0mWOxc7MZlz6hx15WR4ZQrenFdnygqVEFX-4rl-7AKz76nJkwnlDcvgDbAVLi-qCgF-7kVwntu9CUZIcoQWe0EK3rVGi9YqBekoIQy9/s1600/img_1506.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="297" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicqZi0sxIamBCJV-7Wciqyxhn9AKLs37vEu_j6X0mWOxc7MZlz6hx15WR4ZQrenFdnygqVEFX-4rl-7AKz76nJkwnlDcvgDbAVLi-qCgF-7kVwntu9CUZIcoQWe0EK3rVGi9YqBekoIQy9/s400/img_1506.jpg" width="400" /></a>The national shortage of Methotrexate certainly has created a scare to many families of children battling cancer and arthritis. This shortage of MTX started in November and has gotten worse. We were hoping to be able to get the shots at Shands Pharmacy- but as quickly as they get a order...it's gone. Jake and Hannah have had increased side effects ( vomiting/headaches/loss of appetite/ tired/abdominal pain/ mouth sores) since they started taking the MTX pills. We are now trying our very best to find MTX shots. Luckily, kids get the shots every 2 weeks during infusions. Jake HATES shots and enjoyed the opportunity to take a handful of MTX pills each week rather than being poked! so...the search is on for Methotrexate shots!! <br />
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<tr><td class="tr-caption" style="text-align: center;">48+ Hours of Preparation.....</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhh8EHwwt1VnJELINrFXW9Gd8M7gGoVlnwoP90WRb1CJlNnLEb9NZxcpIoBjwMDoEWJl1MQg_k-nbtdY-QI64zqF_fEwH-C9LXoMUm8D1w1KTu02fsGHWcGd21YD03aSigXgaQAuLll9Ite/s1600/img_8725.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhh8EHwwt1VnJELINrFXW9Gd8M7gGoVlnwoP90WRb1CJlNnLEb9NZxcpIoBjwMDoEWJl1MQg_k-nbtdY-QI64zqF_fEwH-C9LXoMUm8D1w1KTu02fsGHWcGd21YD03aSigXgaQAuLll9Ite/s320/img_8725.jpg" width="320" /></a>The dreaded upper/lower scopes were done on Kid # 2. Jake has lost weight, has blood in stool multiple occasions, episodes of throwing up,diarrhea, and abdominal pain. So we had to explore to see what may be causing these issues?? It was a much more pleasant experience with Jake than Hannah a year ago. I knew what to expect, <b>he was amazing</b>, and they prep worked! I have to brag.....He drank all that prep junk is less than 12 minutes!!! Jake was a bit nervous about allowing St Joseph's medical staff accessing his port. Its not a comforting feeling when they call another nurse from a different floor to come help and teach port procedures. Then Jake was rolled into the operating room with all the exposed medical equipment, several medical team staff and a cold, bright room with nobody explaining anything! ! Unfortunately, they did not initiate sedation until oxygen was on, mouth piece in place, ect.... Jake began to cry and was questioning if we made the right decision to allow them to use his port to put him to sleep. Poor kid- he shared he was afraid he wouldn't wake up and die. He understands his port is connected to his heart and that freaks him out a bit! Giving Jake a kiss on the head and having to walk away is the hardest thing! I hate putting my children to sleep, even if its necessary! Everything went well, Jake did require a few extra drugs to get him knocked out, but all went smoothly. Doctor was impressed how cleaned out he was and was only suspicious of his stomach. Biopsy's were taken from his esophagus down to the ilium ( where Chron's hangs out). Fortunately, biopsy's were good and nothing showed up!! <i><b>Halleluiah............</b></i> But frustrating because this does not give us answers to these GI issues Jake is having, been having for several months! <span id="goog_593763424"></span><span id="goog_593763425"></span><br />
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The Sloan Siblings are starting Horse "Riding for Therapy" lessons next month. Decided to try something they might enjoy and have therapeutic benefits, as well. Jake and Hannah were also asked to try Acupuncture. Jake isn't interested, but he promised his rheumatologist that he'll try it. Jake and Hannah both get weekly massages and are always ready for them. I am amazed at how the massage therapist finds Jake and Hannah's hot spots each week without them telling her. I appreciate the extra time she tries to bring relief and even massages Jake's jaw. She is so sweet to the kids- sharing cookies, cupcakes and fresh picked veggies from her garden after massage sessions. I am thankful for the many professionals, doctors in our lives who DO UNDERSTAND this disease and seek out to try to help us in anyway. <br />
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I will continue to be positive, put a smile on our faces and not allow this disease to get the best of us! We don't always share the tears, the intense pain our kids endure and the challenges we face everyday, day after day! Thank you for my family and friends who have been there for us! It helps my children to awaken and know there is a reason why God choose them to live this life and to be happy! A special thank you to my parents who have helped me throughout this winter. I appreciate you always being there for me to help look after one child as I run around to our many medical appointments. And I often came home to a dinner packed in a bag or homemade soup for Jake...THANK YOU!Anonymoushttp://www.blogger.com/profile/13405391515898480443noreply@blogger.com3tag:blogger.com,1999:blog-7195400996232158116.post-67424541934852521202011-12-15T19:16:00.000-08:002011-12-15T19:16:55.594-08:00Finally, I see the light! Yes- Sloan Siblings have made PROGRESS!<br />
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Finally, <b><i>I feel we are making progress and have seen the light!</i></b> This journey is draining and a struggle everyday, but I am pleased to share we have finally seen progress! We never understand why things change ( better or worse) but we celebrate and enjoy the progress when it comes. I give much of our progress praise to Dr. Sukesh at Shands. And I also firmly believe Jake and Hannah are doing better because of medications adjustments and HOMESCHOOLING! Yes- I did say, Homeschooling! This week, Bobby and I have tucked our kids in bed and shared our JOY and thrilled to have finally seen progress in both the kids! We are never sure how long it will last, but are always appreciative to have good days or even steps in the right direction.<br />
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Dr. Sukesh is the new pediatric rheumatologist that joined Dr. Elder and Dr. Modica late this summer at Shands. In September, Dr. Elder and he recommended we increase Jake and Hannah's Actemra, add Methotrexate for Hannah and consider doing joint injections for Jake & Hannah. Well- we agreed to the recommendations, but still didn't see the progress, as we had HOPED to see. Next, we added Toradol for Hannah and added Enbrel back for Hannah (weekly injections). I'm happy to share , we have seen PROGRESS! Hannah is bouncing through the house and not fatiguing nearly as much, joints look much better. Her right knee is still swollen- but she can bend it much better than a month ago. Her fingers and wrists aren't nearly as puffy- however they still hurt daily. Hannah continues to complain a lot about her neck, back,knees, hands and wrists but the pain seems to have decreased! Her labs are better, rashes are fewer and fevers are seldom!! Yea-- now that's a great praise report!! Because we homeschool- she isn't nearly as sick as when she was in a classroom daily even though she's on two biologics (Actemra and Enbrel). Dr. Sukesh shared with me that Shands is the only group who is treating their systemic JRA kids with Actemra and another biologic. There are much more risks involved- but she is being monitored closely! Hannah isn't tolerating Methotrexate very well ( headaches/nauseous/ poor appetite/tired/vomiting). But we have added Zofran and been a little "flexible" with schedule. It was a wonderful "mom-prescribed break" of skipping MTX during the Thanksgiving break. We are trying to get back in the groove. I find it so hard to give Jake and Hannah Methotrexate and then see them the next 2-3 days feel so badly because of the MEDICATION I gave them in hopes that it will help this disease. I have to admit- I am very weak here! Today- we are experiencing the steroid high and tearful moods while being pale, tired, no appetite and nauseous. What a day today has been and on top of that had a very long pediatrician follow up appointment and she was tested by hospital home bound teacher required for upcoming IEP. But at the end of the day, I know we have made progress and I am THRILLED!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgVArLmalZXkj2jFhqKeQOHQKXg7etxH83efcVL9O5kwlpOIttf8gJE8_9A-ctuApHASHMl3YfQx0wgdPYoB_9EnZ7MeuV9UNfgyEFGJcTQr3bcHZIRSieP_uolJMdD_NcYJgnoTXhJNva/s1600/img_6801.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgVArLmalZXkj2jFhqKeQOHQKXg7etxH83efcVL9O5kwlpOIttf8gJE8_9A-ctuApHASHMl3YfQx0wgdPYoB_9EnZ7MeuV9UNfgyEFGJcTQr3bcHZIRSieP_uolJMdD_NcYJgnoTXhJNva/s320/img_6801.jpg" width="213" /></a>Our progress is not just with Hannah, Jake has showed great improvement as well. Jake also had joint injections in both wrists and increased Actemra infusions to the maximum dosage possible. We joke around and say our trip to TN helped our kids feel better. Not sure, but that's when things started to improve. It is so nice to have our Jake back in the evenings without his fevers. Actemra has proven to help reduce his fevers, rashes and improve labs! Fevers do still appear in the late afternoons/ evenings but not as nearly as frequent. Jake continues to have joint pain in most of his joints but the pain level has decreased! He's not nearly as moody and miserable and has tolerance for others much better! Makes the Sloan household much more peaceful! Jake's costochondritis is worse presently. There is nothing more that we know to do.Jake is already on maximum medications to treat pain/inflammation. It's one of those things you just have to wait for it to improve on it's own. . Although- our family has met a great contact through this blog who has offered to help get Jake fitted for a special chest brace to help with his costochondritis. I am exploring options and thinking about a trip to New Jersey-- anything to help ease Jake's daily pain! If you have ever had costochondritis or know much about it......You know it's painful and mimics a heart attack! Right now Jake isn't super conscious about his body.....but I know those days are coming! His chest is very obviously- SWOLLEN and his port sticks out of his skin even seeing the tubing running through his chest! As we celebrate fewer fevers, rashes and better labs......Jake has unfortunately lost more unexpected weight. We are thrilled that he is still growing in height, but he is literally skin and bones. Jake is 91/2 years old and weighs 55 pounds and has slipped down to 21% in weight and 50% in height. He doesn't like that Hannah has passed him in his weight. He continues to deal with frequent diarrhea, abdominal cramps, poor appetite, episodes of throwing up and recent blood in his stool. So.....he will be followed by a pediatric GI to schedule a upper/lower scopes to look for IBD or other related issues in January. Depending upon the outcome, we may have to make medication changes for Jake. Trying not to even think about that-- We finally found the one and only approved drug for Systemic JRA children and it's helping!! We certainly don't want to start all over and go backwards in his treatment.<br />
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Our other great news is we have finally found a great, confident, experienced Pediatric Craniomaxillofacial Surgeon for Jake at Arnold Palmer Hospital for children. Dr. Modica recommended Dr. Ruiz and spoke directly to him and confirmed that he was able to treat Jake. We saw Dr. Ruiz last week and came out feeling so relived to find him. I was excited just sitting in the waiting area as I read over his brochure and types of children he treats! Yes- it was printed right there, " Juvenile Rheumatoid Arthritis- Related Jaw Disorders". He was fantastic, thorough and very knowledgeable with JRA/jaw related issues. He has performed many surgeries for children with JRA who had to have rib removed and used for the jaw bone. Jake doesn't need this surgery at this time but explained to us that it is something to be aware of and know the possibility of needing it down the road. We will see him again in January to decide if we want to treat Jake by doing the aristospan injections. I will also be bringing another copy of Jake's jaw MRI. Unfortunately, provider didn't copy jaw MRI adequately for Dr. Ruiz to review. I think we have made the decision to do the Aristospan injections , but deciding on when? His jaws are currently not at his worse, and Dr. Ruiz would rather wait until Jake is at his worse to see the optimal benefits. We are super excited to have finally found a doctor who can treat Jake's jaw issues. For those of you who aren't aware, TMJ can lead to lifelong pain, disability (mouth opening), dysfunction (chewing), and facial dysmorphism. If we can prevent surgeries down the road and ease some pain and improve mouth opening and be able to more foods, I feel this non-invasive injection is worth a try! Yea-- We get to save a trip to Birmingham, Alabama because that was our next stop to find a option to treat Jake's jaw issues. <br />
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<tr><td class="tr-caption" style="text-align: center;">Hannah & Jake shared their story. Have you met with your local Congress? </td></tr>
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As Jake & Hannah's mom, only I get to see and watch every step in this journey. Some people with close contact with us are probably still trying to figure things out, but it's hard to see the whole story when this disease is invisible and kids fluctuate so much within a day. I am thankful for their extra energy and love for life! I often wonder where we'd be today if it wasn't for their spunk! I am so proud of Jake and Hannah for always putting their best foot forward and being such good troopers at running around to our zillion out of town appointments, or accepting we can't do things because one or both of them aren't up to it. I know they have become so use to riding in the car and sitting in waiting rooms and listening to the details of their diseases to health care professionals. Physicians are amazed that Jake and Hannah know their medical history in detail, can name medications and dosages, ect... No matter what the appointment- most all medical professionals are so intrigued by seeing two siblings both with systemic JRA. Wish it wasn't our story to share- but it's more than a story.... it's our day to day life! We already have 14 medical appointments on the calendar for January. But I take a deep breathe and am thrilled we no longer have the tears and school stress- we'll get our school work done in between our crazy schedule. I am also fortunate to have my husband willing to work so hard ( 2 full time jobs) to be able to provide for his family and assure we're able to put the gas in our car and pay our co-pays for all these zillion medical treatments/ appointments. We've tried really hard this year to let medical bills be what it is...... we'll get them all paid oneday! It use to stress us out and be so worrisome...but the truth is, we don't have a choice to treat or not to treat! God has always provided for us.....we are blessed in so many ways! Hoping for more progress and good results for Jake in his upcoming upper/lower scopes and TMJ injections. Thank you for following the Sloan Siblings in their JRA journey. We appreciate the prayers and words of wisdom. As far as myself, I was suppose to be starting Actemra this month. I shared with my rheumatologist that I wasn't able to commute that far for infusions with homeschooling kids and working around all their medical appointments. My body is certainly feeling my Rituxan running low. My heart is acting up again, but trying to get extra rest my body is requiring and hoping it just goes away! Thanks for all your prayers and support! We are overjoyed to see some progress for Jake and Hannah! We are no where near pain free days or even close to remission, but we'll take <i><b>PROGRESS</b></i>! We're ending our week by participating in Lakewood Ranch Jingle Bell Run. We are super excited to see our special friends (Sami and Daniel) and supporters of the Arthritis Foundation.<br />
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Merry Christmas to each of you. Hope you are able to "Raise your Hand Against Arthritis" in your community, too.It's going to take your voice to help get more research for better medications and possibly a cure one day! It simply isn't acceptable to live this way- no matter what your age is! Thank you for those of you who have supported our family! Merry Christmas!Anonymoushttp://www.blogger.com/profile/13405391515898480443noreply@blogger.com2tag:blogger.com,1999:blog-7195400996232158116.post-17538854626455255252011-12-01T19:58:00.001-08:002011-12-01T22:19:36.389-08:00Am THANKFUL for where we are today!<div class="separator" style="clear: both; text-align: center;">
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Looking back at 2011, I have to admit <i><b>I am thankful for where we are today.</b></i> We will never give up <b>HOPE </b>to find a cure one day or be able to experience remission or hear the bell ring! This year was busy indeed- but am thankful for the friendships I have made along the way. I am also grateful for my parents who have been beyond supportive of Bobby and I and our treatment decisions and everyday life decisions for Jake & Hannah. Dr. Elder and her staff have been outstanding and just as determined as us to help control the disease. I originally was asked to create a blog for the Arthritis Foundation last year. I was<i> hesitant</i> as to if I really wanted to share this journey to complete strangers. Because I have shared our story to friends, family, complete strangers through the internet and even to our Congress in Washington DC, I feel we are a few steps closer to making progress in this disease. This year there has been 6,332 viewers of my blog. I often get private messages/emails from people across the country thanking me for sharing our story. It's amazing to feel the connection with others who walk this similar walk in life. All of a sudden, I feel as if I am not alone in this journey with Jake and Hannah. We have a unique story and I hope to help others who are also battling this disease and encourage people to speak out and let your local Congressman know that Arthritis is not OK. It has to start there...... we desperately need more research, better medications and find a cure for these children like Jake and Hannah<br />
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<tr><td class="tr-caption" style="text-align: center;">Hannah is 7 years old- living with Systemic JRA.</td></tr>
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As I reflect back over the past year, I am thankful for many of our outcomes and decisions we have made along this journey. I am thrilled Hannah's upper and lower scopes did not show any indications of Chron's disease. Enlarged liver/spleen/lymph nodes and significant abdominal pain is enough! We were fortunate to have Hannah and Jake both fight the Rota Virus and H1N1 virus. Yes- Thank you Lord for letting them be strong enough to bounce back in no time at all! Hannah's eyes-- after several weekly eye appointments, steroid drops, Hannah got the GREAT news of "No Cells". That was one of the best appointments in 2011. Jake and Hannah both have been on a few biologics this year ( Enbrel/Remicade/Oriencia/Actemra), but we keep trying to tweak medications to find relief and better control of disease. I think we are getting there..... The combination of Methotrexate, Celebrex , Enbrel and high dosage of Actemra seems to be decreasing inflammation, fewer fevers, rashes, and better labs. YEA!!! Of course we try just about anything & everything along the way, too. Jake & Hannah both got physical therapy, occupational therapy , aquatics, and counseling weekly. Yes- those were some busy weeks trying to squeeze in minimum 8 appointments weekly, after school hours and get homework done and to bed at a reasonable time! We did that until insurance dictated days were maxed out for the year. We also got orthotics, wrist splints (day & night), knee braces to help with everyday joint pain/inflammation. We have also tried full body massages and joint injections (wrists & knee). One of the BEST decisions we made this year was to homeschool Jake & Hannah through Polk County Hospital Homebound program. I followed my heart and all of us could not be happier! <br />
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I am also grateful for our doctors who advise the aggressive treatment approach for Jake and Hannah. Jake & Hannah's recent MRI's (cervical/jaws/knee/wrist/hands) were all good. Our doctor was surprised himself but said it was only because of their treatment and the aggressive medications! For the first time, I felt good about pumping my kids with all these toxic medications! We also made the decision to have Jake & Hannah get ports. It was a hard decision to knowingly take away more from Jake & Hannah........but they LOVE the ports! Infusions every 14 days is so much easier with ports! Once again, I followed my heart and am thankful for our decisions!<br />
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During 2011- our family was able to share our story on Capitol Hill. Wow-- wasn't expecting it to be emotional to share our life in 5-10 minutes! Thinking about all the tears I have wiped in the past few years was difficult to share and paint a picture of our family's day to day life! I am beyond satisfied that our local Congressman, Dennis Ross joined the Arthritis Caucus. Thank you, Congressman Ross! <br />
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Bobby and I could not be prouder of Jake and Hannah. They have done amazing at accepting the disease , medications, treatments, and the zillion out of town medical appointments and all the things they can not do like their peers. It's hard on us as parents and even more difficult for Jake and Hannah to have to explain to someone about their disease. We continually hear, <i>"but they look so healthy".</i> It's wonderful that I no longer have to explain to educators about why we miss school for out of town medical appointments, or why my child may be a bit hyper the day after infusions due to steroids, and why my child is excused (per 504) from excessive running in PE class! <i>ohhh yea- I am thankful for home schooling</i>! I no longer wipe tears at night because my child was laughed at by peers and said he looks like a "discovery child" due to wearing splints, and I don't have to explain to a PE coach that my child has internal organ involvement and really does have abdominal pain and really should not be made to sit out of simple games because she didn't run the football field as a warm up.And I don't have to explain to a car line volunteer why my child isn't going to school even if she does look cute & smiles with a 102 fever and hasn't ate in several days and is in significant pain and being carried from room to room. And I don't have to worry about a teacher feeling she doesn't need to share with me when a child in class has chicken pox or H1N1 virus or half the class is out with strep throat. ohhhh Yes I am so thankful I don't have to explain to teachers that my children have not been vaccinated and are medically exempt NOT by choice! Jake and Hannah miss their friends at LCS but are overall much happier & healthier being homeschooled. I am appreciative for my friend, Nancy who got us through the first 9 weeks of "Sloan Siblings Academy". The Hospital Homebound program is the perfect fit for my children right now. <br />
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Many people in our community have reached out and helped us one way or another or even prayed for our children. Hannah's dance teachers have been exceptional kind and understanding! It's people like Miss Carol who have experienced sickness with a loved one that UNDERSTANDS. Our church pastor continues to pray for Jake and Hannah and calls for updates to direct prayer with his staff at FUMC. Many co-workers of LFD and LCS friends supported our family in the Polk County's Arthritis Walk. Our family has raised over $25,000 in the past 3 years. This money raised has a huge impact on our family and truly gives us HOPE for better medications and a CURE! We are also appreciative for our family who lives out of state who has kept our children on their local church prayer lists. It's humbling to think strangers in another state are taking the time to pray for our children and we<b> THANK YOU! </b><br />
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<tr><td class="tr-caption" style="text-align: center;">Jake is 9 years old - living with Systemic JRA.</td></tr>
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We work very hard at making the best out of this situation and keeping a positive attitude. There is nothing I would not do for Jake and Hannah and the other 300,000 children who also suffer from JRA (Juvenile Rheaumatiod Arthritis). This was nothing Jake and Hannah asked for nor was it ever something Bobby and I ever thought we'd be raising two children with JRA. We were sad to learn earlier this year that Jake is also Systemic type rather than Polyarticular. I guess it goes along with our less than 2% chance of having 2 children with JRA.( Less than 10% of children with JRA are Systemic type.) We cherish our friendships with other children who also have JRA and their families. Jake & Hannah both were able to attend Camp Boggy Creek this summer. Camp Boggy is such a special place and is over flowing of LOVE! We look forward to the annual JA Conference, Camp Boggy Family weekends, Family Connect Days and any opportunity to be with our "Arthritis Family". <br />
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As we look back at 2011 happenings in our JRA Journey- we know we have a lot to be thankful for. We will never give up HOPE to find a cure and hear the bell ring! Thank you for those of <i><b>YOU</b></i> who have helped our family keep our smiles and faith strong as ever!Anonymoushttp://www.blogger.com/profile/13405391515898480443noreply@blogger.com5tag:blogger.com,1999:blog-7195400996232158116.post-39032927835341393842011-11-06T10:55:00.000-08:002011-11-06T10:55:42.217-08:00Port surgery, MRI's & Joint injections, sedation twice in a week x 2 kids = DONE<div class="separator" style="clear: both; text-align: center;">
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I have lots to be thankful for and am so appreciative of our nurses and doctor's coordinating Jake & Hannah's appointments together. But wow-- it was a hard week to have both children go through port surgery, sedation for MRI's and joint injections all at the same time! We did it, the week is over and we all have bounced back like nothing occurred at all! Thank you to those who checked in on us during the week.<br />
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Port surgery overall went very well. Jake & Hannah both got their ports in the exact location we were hoping for and on the first attempt. We had shared with the team that we don't want a port for Jake if he had to use right side- upper chest area! That spot was off limits. Jake is a hunter and the shot gun kicks back hard on this area! So when they both came out of recovery- we were pleased first attempts were it! <br />
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The nurse had determined Hannah was going into surgery first. This was fine for both of the kids. Neither of them were too nervous and understood this port surgery was going to help make treatments every 14 days much easier. All went smoothly in the pre-op, lots of questions to answer to the team. Amazing how many health professionals had no idea what JRA was and a zillion questions as to how we had two children both getting ports! As soon as Hannah got her first pre-op meds, she got sleepy and the TEARS turned on. I knew it was the meds- but it was still difficult to watch her get soooo restless and cry harder and harder each minute. I was able to go with her in the operating room until her eyes rolled back, body limp and surgeon arrived. I looked at the team- kissed my baby and said, "please take good care of my girl". Walking away was hard, but I had to stay strong as Jake was waiting for me to come back! Surgery was to take an hour and half....... Bobby and I entertained Jake as much as we could while watching the clock anxiously for Hannah to come into recovery. <br />
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Surgeon stopped by in pre-op and shared with us , "Hannah is done". But we waited and waited until I can get my eyes on her. When I was able to be with her in recovery- O MY GOODNESS!! She was a complete mess! Her lips were purple and swollen, eyes swollen, and had very unclear speech and was crying uncontrollable while kicking and thrashing around hospital bed! Nurses very calmly tried to explain that she will come out, give her some time! We gave her lots of time, once she was able to speak, everyone heard what she had to say. " Mommy, please take me home, I want to go home, and I want Jakee". But as more & more time passed, she started to talk about pain while thrashing in bed, screaming & crying. Nurses gave her morphine, then another pain med. Meanwhile, the anesthesiologist brings me my fancy blue jump suit/hat/shoes/mask and says, "it's time to go to O.R. with Jake". I couldn't walk away from her just then..... I felt so torn to leave Hannah, but I knew Jake was waiting for me to go with him in surgery. Thankfully, Bobby stopped by and said he'd take Jake and Jake was ok with that! awhhh.....I slip away to run down the hall to find Jake on the stretcher on route to operating room. I give him a kiss and wish him good luck! I'm wondering about now-- why did I schedule 2 surgeries on the same morning? <br />
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Bobby returns and shares with me Jake was a pro. Closed his eyes and curled up in a ball to go to sleep! Bobby just walking into seeing Hannah a complete mess- he's wanting to know whats wrong with her?? There was nothing we could do to stop her screaming & yelling and thrashing herself all over the bed. Nurses decided to move us to another area- as we wait for Jake in surgery. As more time passed- Thankfully Hannah came out of her drug induced mess and then fell asleep for about 2 hours. Perfect timing for her to sleep- this allowed me to be with Jake in recovery room. Jake woke up so calm and peaceful with some pain. Nurses gave him morphine and he was just full of questions about his port. Jake had a drink and then we went to other area to be next to Hannah and Bobby. Whew-- surgery done and now being escorted to infusion room for Jake & Hannah's treatments and rheumatology appointment. <br />
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Jake & Hannah bounced out of their wheelchairs as they entered the infusion room to greet their friend, Gavin. It's always so nice to see familiar faces and share your journey with friends who understand it all too well! Assessing ports was a piece of cake! IV's were hooked up and it was by far the easiest day in the infusion room. I'm so happy I took the nurses advice and scheduled IV's immediately after surgery. We kept kids ports accessed all week and they had plenty of pain meds in them to help with discomfort! Hannah got her increased Actemra, Solumedrol and added Torodal today. Jake got his higher dosage of Actemra, solumedrol and Methotrexate. Met with new physician, he was very kind and shared his thoughts of where Jake & Hannah might be heading..... Discussed possibly adding another biologic to the current meds. He gave us two choices and wanted us to think about it as we pursue joint injections and wait for MRI results. Today- he wanted to do multiple joint injections based on inflammation in Jake & Hannah's joints. He is wanting to do both kids wrists, ankles and knees. We agreed to consider on Friday based on amount of inflammation. But we choose not to tell kids all week- they were already anxious about wrists injections.<br />
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Bobby went back to work- Kids and I stayed in Gainesville for the week. We tried to do a little bit of fun and school work while recouping and waiting for Friday's appointments. We went to Natural Science Museum, Butterfly Garden, and Build-A Bear. Jake & Hannah both bottomed out very quickly and our outings were short. Jake was very nauseous, had absolutely no appetite all week and was not feeling well at all. I always try to figure out, WHY? I am thinking he had his methotrexate within 5 days of last dose and it may have made it sooo yuky! The highlight of the week was Build-A-Bear. We were able to get a port from hospital and make our own bear friend with her own port! The sales associate, Michelle, was so nice and also has a friend who suffers from JRA. So we spent most of our time in hotel, snuggled up with our bears! <br />
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Friday has arrived- MRI's with sedation and joint injections should be no biggie!! Bobby has come back to Gainesville to be with us. <br />
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Hannah again was selected by staff to be the first to start MRI's. She was getting MRI of neck/spine/wrist and hand. All was good- UNTIL the anesthesiologist gave Hannah versed! Hannah immediately became relaxed and out in my arms. Carried her to the bed with Bobby and Jake following. Within seconds, Hannah began crying, thrashing around on the bed. The team began to watch her closely and added more meds through her port.They asked us to say bye and they'll get her settled. I was giving her a kiss- and Jake was feeling like he was going to throw up. He made it to a chair and told Bobby he was dizzy and couldn't see. I walked into the room to catch Jake from falling out of chair. Yes- he passed out cold! So there we are--- on the floor in the MRI room and Hannah a few feet away..."reacting" to her anesthesia meds! The anesthesiologist later came by to apologize and check on Jake. (He said he wasn't expecting her to respond that way.) Jake was scared when he came around. he told us that he was blind and he couldn't see it all. As he layed down in a hospital bed and rested, tears began to flow..... He didn't want to be put asleep like Hannah and he was scared. He also shared with us that "he went to heaven just for a bit." We assured him, he didn't go to Heaven and that is how it feels to pass out! And...most of all, he is going to be ok! He was full of questions- so we then had to explain that Hannah reacts differently to anesthesia meds, and he will be perfectly fine! <br />
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Jake had tears rolling down his face, his face got red spots and before we knew it.....He was asleep and wheeled off for his jaw MRI. Bobby and I were escorted into the waiting room.......waiting for Jake & Hannah to finish their MRI's. Somehow-- joint injections were suppose to be coordinated while kids were still under sedation. The rheumatolist and 2 nurses came passing by with their bucket of sterile goodies and shots! We were able to be present for Jake & Hannah's injections! Inflammation was down today- so Jake got both wrists injected and Hannah got both wrists and right knee injected. Joint injections were a first for us!! WOW-- didnt prepare myself to see kids JUMP and react even while under sedation! The team was great, very thorough and left us with Toradol script for both kids for 5 days.<br />
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Jake woke up pleasant, but in wrist pain. Hannah did not awaken pleasant and was totally out of control, AGAIN! Here we all are in the small MRI recovery room. I warned nurses and anesthesiologist....but they got to see it all first hand! A few nurses were patient, a few tried to calm her down and my husband simply thought I should be able to control her! Needless to say....it wasn't a pleasant experience. Jake was starved and had enough of her screaming, crying and kicking! So much for not using the injected joints......they were thrashing non-stop and hitting bed rails! I knew Hannah was not really there yet! Her speech was slurred, eyes not focused and talking about silly things here & there! I knew Bobby was embarrassed......I needed more time and she'd snap out of it! Before I lost my mind.....Hannah came around and was pleasant as can be but in a lot of pain! We loaded the kids up and got pain meds filled as quickly as we could. Pharmacist I was reluctant to fill RX because of a counteraction with Methotrexate. He called into Shands, but no return calls on a late Friday afternoon. Finally, he gave us the toradol but made sure we understood the possibilities and to go to the emergency room if any symptoms occur. Toradol taken every 6 hours......kids were hurting indeed!<br />
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Saturday- a new day! YEA!! Ports were no longer assessed and on their way to complete recovery! Injection sites were much less painful and we were headed back to home, sweet home! Happy to have this week DONE! It's a learning curve- and I will definitely schedule Jake and Hannah on separate days anytime Hannah has to have sedation! I am really hoping Hannah does not need any type of sedation for awhile! Now we await for MRI results, wait to see if joint injections will help decrease inflammation/pain in wrists and Hannah's right knee. Jake has his appointment in December7 for oral/facial surgery for jaw injections. And.....we're pondering around the thought of adding another biologic medication to the mix of current medications! <br />
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Thank you for those of you who follow The Sloan Siblings on their JRA Journey. It's a ongoing journey, always things a happening and always wondering "why". It simply never ends.... Hannah has now build up Methotrexate and she gets to deal with severe nauseous/headaches/poor appetite and vomiting days after her weekly chemo med(.methotrexate). Zofran only helps so much- it's just heartbreaking to see her loose her spunk! Jake continues to have his days were he simply isn't doing well , hurts all over and is a challenge to even eat! Jake's fevers were fewer for the first several weeks of starting Actemra- but they are back to several days a week, if not daily. I am so proud of Jake and Hannah that they are capable of putting a smile on and not let this disease get to the best of them! They both have huge hearts, eager to learn and love life itself! We don't know what the afternoon has for us or where this journey will lead us, but we try to remain positive despite the obstacles our family deals with everyday! Thank you for those of you who have kept us in your prayers, checked in on us and show our family support. You know who you are- and THANK YOU! Our family strives to live life to the fullest and know better days to come! Right now, we are counting the days until we make our first road trip to Sparta, TN. <br />
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<br />Anonymoushttp://www.blogger.com/profile/13405391515898480443noreply@blogger.com1tag:blogger.com,1999:blog-7195400996232158116.post-24215366292992292172011-10-13T19:57:00.000-07:002011-10-13T19:57:45.442-07:00Sloan Siblings are getting prepared for PORT....Hoping for more positive expereinces in the infusion rooms! No Taco's- please!<div class="separator" style="clear: both; text-align: center;">
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Fourteen days flew by so quickly.....we were back on the country roads heading to Shands for another round of infusions. Hannah had another day at Shands that she considers one of her worse days ever. She even told me that she can't wait for "eternal life". I ask her why, Hannah says" because I will be pain free and no more needles"! So today the nurses were not able to find a good vein and searched for a very long time, recruiting other nurses opinions as to where they should attempt. Hannah got so incredibly upset after the first attempt failed. She made up her mind that she was not going to sit still or give them a arm at her will. We gave her a few minutes to calm down as I then switch over to Jake's chair to help him get his IV's started. He was unsuccessful first attempt, too. As the nurse digs and pokes around at another vein on Jake, Hannah is able to get the words out," Mommy, please take me home". There was no other place that I'd rather be than home. I knew what was going to happen next....... The nurses got Jake's IV's flowing and then I carried Hannah out of the infusion room to a private room where she was made a "TACO". Blankets were wrapped tightly around Hannah's body expect for her one arm where the IV would be inserted. Three nurses, child life specialist and Mom held Hannah down as TIGHTLY as we could until her IV was inserted. She screamed so loudly and was hysterical! My heart broke because she begged me over and over again, "Please mommy, take me home". When we got back into the infusion room, Hannah was exhausted and worn out! Bravery was not there today for Hannah!<br />
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<tr><td class="tr-caption" style="text-align: center;">Jake is my Super Star! </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Hannah is NOT feeling up to infusions today!</td></tr>
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Dr. E and the entire 4th floor heard Hannah! Dr. E could tell by looking at Hannah that she isn't feeling well. Unfortunately, we realized that the med orders didn't get picked up and Hannah didn't get her Actemra increased today like Jake did! So .... we will wait another 14 days for increase of Actemra. Meanwhile- Dr. E wants to add Leucouvorin, increase Celebrex, and add Toradol. Dr. E also wanted to add right hand and wrist MRI when Hannah gets her MRI of neck this month. The plan is also to do joint injections in Hannah's wrists when she is sedated for her MRI's. If Hannah didn't like the IV in her wrist, then I am sure she will not be thrilled to have a long needle in her wrists!! Dr. E also talked to Hannah in great detail about not using a pillow at night. Hannah expressed she can try to use her bear, Precious, to hold her ice pack under her neck, but she couldn't wear her wrist splints and no pillow at night!LOL- hard to convince a little one that these interventions will possibly help! <br />
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We were able to finish IV's and see Dr. E just in time for our surgery consult apt. We walked in the door knowing it was time for Hannah to explore getting a port. The nurses and md certainly shared with me...It was time! But I had a lot of reservations for Jake, and Jake did not want any part of discussing a port for himself. The nurse practitioner was so helpful and answered my zillion questions! Jake was relieved that he can still "work" and carry firewood and ride his 4-wheeler, and swim in Dale Hollow Lake. The surgeon was hopeful and felt it was something we needed to do for Jake & Hannah. No rough playing, no contact sports and I officially wear another hat! My hat is the Port Police hat! The md strongly stated this was the most important job-- be sure anyone who touches my kids port has experience and is not sick and using nothing but the BEST sterile procedures to help reduce infections! So..... October 24 at 7am.....Jake and Hannah will BOTH be getting a port placed. We hope the port will be on upper left chest area- but we won't know until the port is placed and Jake and Hannah are out of recovery! Jake & Hannah will go straight to the infusion room to get their infusions with their NEW PORTS on this same date!! <br />
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<tr><td class="tr-caption" style="text-align: center;">Hannah crashes in bathtub after getting home from a VERY long day! </td></tr>
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Meanwhile- we keep going everyday! On a positive note- Jake and Hannah both had their first body massage. They loved it and we will definitely be scheduling more in the future. Waiting for Shands to call and schedule the remaining appointments for Jake and Hannah. Looks like October is a busy month for the Sloan Siblings! Jake will be getting a MRI of his jaw and joint injections of his wrist and ankles. Hannah getting MRI of her neck, right wrist and right hand and wrist injections, too. It is so CRAZY that Jake and Hannah are so similar in so many ways! Even their sed rates are almost always the same! We will also be getting a different Hospital Homebound teacher who is able to come during the days. A little anxious about a new teacher- Ms. Nancy understood so much and I never had to explain a thing! I will still say it is very difficult to explain to others from the outside who are trying to look in. I am so PROUD of Jake and Hannah for putting a smile on and doing their best and keep going! What people don't see......is simply heartbreaking!Hannah has been feeling rotten lately, Jake has lost 2 pounds in past 2 weeks and has had severe abdominal pain and doesn't feel the greatest either! This disease is very draining and frustrating! What I'd do to have an opportunity to have 2 healthy kids! Praying we made the right decisions...... and hoping to reduce pain and get this disease a tad bit more under control! Jake and Hannah are truly my HEROES! <br />
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<br />Anonymoushttp://www.blogger.com/profile/13405391515898480443noreply@blogger.com6tag:blogger.com,1999:blog-7195400996232158116.post-63934385992047192832011-09-28T21:09:00.000-07:002011-09-28T21:09:16.938-07:00Decisions...Decisions....And More DecisionsI don't know if any one of us parents were actually prepared to make so many decisions for our children. We are all faced with making tough decisions that affect our children, not only immediately but years to come, too. Raising two young children both living with chronic illness puts Bobby and I in a position we are constantly making HUGE decisions for our children. We take our challenges to God and I most always follow my heart, but sometimes I am lost as to what to try next! Why can't I just take all this crap away from my precious kids and live life?? <br />
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Today was one of those days where I just wanted to cry! Hannah describes her day as "her worse day ever." It wasn't her worse, but not a easy day for her when she woke up feeling horrible and it only got worse. It wasn't fun holding down a screaming, crying, kicking 7 year old with the help of 4 medical staff as we try and try and try to get a IV line started to pump these NASTY drugs in her body which are NOT helping controlling her disease. It tears at your heart when your child is screaming for help and begging "MOMMY, please help me, get me out of here and don't let them hurt me". I tried to hold back my tears as our favorite nurses do everything they can to get a IV started! Finally after 3 attempts-- We got it! Hannah was MAD at everyone, including her own Mom! She was upset, and simply not wanting to be at Shands today. She took awhile to calm down and accept she was hooked up to a pole, next to her brother who was also hooked up to a IV and we could NOT leave until all meds were finished! Thank goodness a young college volunteer was brave enough to sit with Hannah and watch a movie together! <br />
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<tr><td class="tr-caption" style="text-align: center;">No Chemo shortage for Jake!</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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Dr. M made her rounds to the Sloan Siblings. Jake was disappointed- he was hoping that his mouth sores and national shortage of Methotrexate would maybe give him a break and he can stop it for a bit! He woke up today and said, "yes, I have 4 mouth sores and the doctor can see for themselves that I can't take Methotrexate anymore". I didn't dare tell him that there wasn't a chance he'd be taken off the chemo drug that causes so many issues but possibly helps the disease??? Six infusions of the new and only approved drug (Actemra) for Systemic JRA and we are not seeing the results expected. In two weeks- we'll be increasing the dosage and hope to see better results! Joint injections were discussed again today. Shands new Pediatric Rheumatologist does the joint injections at clinic but with no sedation. How do I convince Jake that injecting wrists is a cool thing and this will work! I got so lost in the conversation today, I may heard injecting ankles, too? I knew his ankles were one of the hot spots, but she said they are becoming just like his wrists!! LOVELY--- flexion is limited! (My boy needs to be able to pull that trigger on his shot gun and run home with his turkey on his back! LOL) He has figured it out.......NOTHING has worked so far! Jake has almost stopped talking about his daily pain and the hopes of a new drug working! I am actually proud of him- he has accepted a lot for such a young man! Good news- Dr. M believes she found a oral facial surgeon in Orlando area who can inject Jake's jaws. We have been searching and searching for someone in Fl for atleast a year! Jaws are a big concern and Dr. wants to do a MRI of jaws and inject the jaws. I say that is good news...... not really but what is good about all of this?? Thank goodness we didn't discuss GI issues today. I don't think I am up to scoping Jake just yet! It has been mentioned, but he has had fewer episodes of throwing up and diarrhea in the past month! <br />
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Hannah's biggest complaint is her neck. What do you do for a neck? Yes- therapy would be lovely non-pharmaceutical start but insurance only approves 60 days of therapy. Didn't you know that PT and OT can provide therapy and 60 days magic happens for our JRA kids! NOT!!!! So frustrating--- and Shands has requested for additional visits, DENIED!! Md is scheduling Hannah for a MRI of her neck with sedation. During this sedation period- we're going to coordinate joint injections in Hannah's wrists. She has already warned me, "nobody is touching my wrists again with a needle". Hannah needs some relief in her fingers and wrists, so we made the decision to try another approach directly into the troubled wrist joints. So we'll be taking a closer look at her neck, injecting her wrists and increasing Actemra. <br />
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The day has come.....we are making the decision of inserting a foreign titanium object into my kids body which may cause infections and at risk for much more while giving them a break of needle pokes and re-pokes at least every 14 days! Adults that have had ports quickly say, "Yes, do it". But for our children it is much more complicated. This journey does not have an expiration date, we won't hear the bell ring after 6-12 months of treatment. There won't be a celebration party , ports removed and a thing of the past! If we choose to have a port surgically implanted under their skin directly into their central veins, it will be for the long haul. Which also means Jake & Hannah will outgrow their port and need it removed and another one replaced so it won't get displaced and cut off circulation in affected tissue. It can be dangerous due to high risk of infections and even blood clots can be common problem. It breaks my heart to make the decision for Jake & Hannah: No contact sports, no rough playing, no blows whatsoever to the chest area! I am once again taking away and robbing my kids from a childhood they so deserve, too! Then the nurse quickly reminded me, no 4-wheeling for Jake. I said, "what, he isn't going to stay off his 4-wheeler". Purchasing a chest protector is a option for Jake to wear. Yes- won't he be thrilled to hear mom remind him, "put your knee splints on, wrist splints and your chest protector". I can almost feel in my heart its the right thing to do for Hannah, but then how do I justify for Jake? I was told if they get any fevers then they must be taken to hospital and blood cultures drawn as the basic protocol. I laughed......Jake gets fevers several evenings a week as it is right now! Where's my magic wand? I do take all my worries and concerns and needs to God, but it still is not a easy decision!! <br />
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On a positive note, I followed my heart and am thrilled to have Jake & Hannah attend Sloan Siblings Academy. (Also known as, Hospital Homebound program.) Kids are thrilled to be home schooled and love it!! Homeschooling isn't for everyone , but it seems to be exactly what we needed this year! I'll blog soon and share my zillion reasons why I love homeschooling my children.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjikQXjNsr0_FMm9eeom8Jj3dYi6N311ceqPJ2JfSrg6NNSjZpIACd52ZJNQss_cHteGXr6S1bb8fWDIS_YE_gyV5M5p75BRjgiy16yyUsmzK_U9CBt8-wYk9gMNlDoj6J7e8v6iqbS5KF4/s1600/img_0758.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="238" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjikQXjNsr0_FMm9eeom8Jj3dYi6N311ceqPJ2JfSrg6NNSjZpIACd52ZJNQss_cHteGXr6S1bb8fWDIS_YE_gyV5M5p75BRjgiy16yyUsmzK_U9CBt8-wYk9gMNlDoj6J7e8v6iqbS5KF4/s320/img_0758.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our new stomping grounds.....</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiY9OunHruB-nvUvwar0XvAfzbot1jmN0n75N9TBj1Aqu183udfbc_4z230o39wkp6mLfmvUC0yhkFBlYm5o67fb8fHYD5a24YIyjAMNZP5n9A1mPLkMF_yLw6hVaZSf8qtBEVIGw3VcU0r/s1600/img_0885.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="148" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiY9OunHruB-nvUvwar0XvAfzbot1jmN0n75N9TBj1Aqu183udfbc_4z230o39wkp6mLfmvUC0yhkFBlYm5o67fb8fHYD5a24YIyjAMNZP5n9A1mPLkMF_yLw6hVaZSf8qtBEVIGw3VcU0r/s200/img_0885.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A day at the Sloan Siblings Academy.</td></tr>
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And......our most exciting news!!!! We have decided to fulfill our family's dream. We will be moving to Sparta, TN and raising our children in the country! If you know me well, or my husband and children, we all love the outdoors, animals and TN. Our dream is going to come true...... Next month, we'll spend some time getting to know our new 33 acres and getting antiquated to Sparta before we move. Had hoped to meet our future Rheumatologist and be able to get infusions up there over the Thanksgiving break. Not sure if that can happen- insurance dictates so much!! ugh .... Every 14 days for infusions fly by quickly- we may have to settle for Enbrel shots while we are in TN. But the thought of adding another imuno-suppressant on top of another..... Yikes! We won't be moving anytime real soon, but we made the decision to be closer to Grandparents and live in the country! I look forward to sharing TN story's with you oneday....... I hope the good, clean country air will wash Mr. Aurthur out of my children's bodies and all these drugs are not necessary to survive! We are really excited to make a change and focus on some new interests. Bobby is looking forward to spending time with his family and being a retiree! <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiO4r2XLVbY0dzxlR__XyqzCTiZNSf0YkrcgXbRvGH6sBwHxOjRdg7xwr-Onq-qzTjo-rDX0BXRkFym3kFUurBGhEzLHz2vnqEEGhUUDzdFuRSORPXDuVulOLudSwI_dl5lfyf-VpDheKPC/s1600/img_0906.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiO4r2XLVbY0dzxlR__XyqzCTiZNSf0YkrcgXbRvGH6sBwHxOjRdg7xwr-Onq-qzTjo-rDX0BXRkFym3kFUurBGhEzLHz2vnqEEGhUUDzdFuRSORPXDuVulOLudSwI_dl5lfyf-VpDheKPC/s320/img_0906.jpg" width="238" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hannah was wiped out, a long day! </td></tr>
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Our family & friends who have been there for us, THANK YOU! This disease is invisible and very difficult to explain to others so you can even begin to understand a piece of our everyday life. But those of you who have loved my children and prayed for our family, thank you & please don't stop the prayers! The Sloan Siblings journey isn't over, there has not been a bell heard and they will most likely never hear that bell ring! So we will always count on your support and prayers to get us through each day! And today was a long day!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAV9WCkveHUALQ0X9UC1K0mAjqfeERfeZsxI_JfodeB7celXkqVbef1fwj1RtxrVh6u2Dcp7WtvfT3rRTvvlX23VQ1SrJfODIRuZm4rAAQNL-K10e97KK-8VkwNif66MTp2JGDkNzllhkf/s1600/img_0899.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAV9WCkveHUALQ0X9UC1K0mAjqfeERfeZsxI_JfodeB7celXkqVbef1fwj1RtxrVh6u2Dcp7WtvfT3rRTvvlX23VQ1SrJfODIRuZm4rAAQNL-K10e97KK-8VkwNif66MTp2JGDkNzllhkf/s320/img_0899.jpg" width="236" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jake is just a grinning....focusing on TN! </td></tr>
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<br />Anonymoushttp://www.blogger.com/profile/13405391515898480443noreply@blogger.com1tag:blogger.com,1999:blog-7195400996232158116.post-15117284219638765082011-08-20T18:48:00.000-07:002011-08-20T18:48:49.595-07:00The Sloan Sibling's Summer Buzz<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCRhdOaNxJKbwHJ2uBochF_2dbLc1poMZY2jav1WYeNfNa89j9lvXKv_5Qz3e649gQJdh6ja_NL8Z2-QSX0Yl4_oOF1dgcldWxdSRxetxlEYlWBRlaa7IwOncaW2_hQsw9ZO0vibA2BOlk/s1600/img_0698.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a></div> <span style="font-size: small;"> </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhh5C7Sqq3H9rBzbG3Y30555KBZeknhpdlbW3IPpVGbHU0b576dMFiw2e3H3MVQWHU0cNR8vSKI0MjaKFm7uImDSAHZT0_kD5bdGh07Kiq78ZE_p2dKGmEn9VGvxBS4UiXxKde_7HN3eXOk/s1600/img_3933.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="211" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhh5C7Sqq3H9rBzbG3Y30555KBZeknhpdlbW3IPpVGbHU0b576dMFiw2e3H3MVQWHU0cNR8vSKI0MjaKFm7uImDSAHZT0_kD5bdGh07Kiq78ZE_p2dKGmEn9VGvxBS4UiXxKde_7HN3eXOk/s320/img_3933.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jake & Hannah at Camp Boggy Creek </td></tr>
</tbody></table><span style="font-size: small;">We started our summer off by celebrating Hannah's 7th birthday. By her turning 7 meant that she was eligible to be a camper at Camp Boggy Creek. Needless to say- Hannah's bags were packed and she was ready for a week at Camp Boggy. Walking away from Jake and Hannah at camp in the care of complete strangers was one of the hardest things I have done. Even the best of the best nurses and Ped. Rheumatologists at camp, it was not ME! Neither of the kids had been feeling well days prior to camp, so naturally I was worried. I reminded myself everyday that Camp Boggy Creek was designed for chronically ill children and to provide a experience for the kids to forget what they have and simply be a kid. I wanted that more than anything- so I survived a week without Jake and Hannah. I was anxious to pick up my darlings and they were WORN OUT, but had the time of their lives! They can't wait to do it again next summer and hope our entire family will be back in September for Family JA Weekend. </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMNn_ksj4kXZWE3i9PDaKFarTof0IYPAQdW8esKV5MuyPiNZVoI9HDoAaYfDvw80vRTvl4KtqujdlU0favIjHlabMAmFWjYp9cwReWN3SvYhkslysapFGP1613p3mki5YEenwqVawulAjL/s1600/img_0698.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="148" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMNn_ksj4kXZWE3i9PDaKFarTof0IYPAQdW8esKV5MuyPiNZVoI9HDoAaYfDvw80vRTvl4KtqujdlU0favIjHlabMAmFWjYp9cwReWN3SvYhkslysapFGP1613p3mki5YEenwqVawulAjL/s200/img_0698.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hannah & Jake both getting 1st dose of Actemra</td></tr>
</tbody></table><span style="font-size: small;">I</span><span style="font-size: small;">n between camp and a week at the beach, Jake and Hannah started their first treatment of Actemra- the first biologic approved for systemic JA. It is always stressful switching medications and wondering if this is the right decision. It's easy to feel discouraged, but we strive to remain positive and hope Actemra is the medication to help Jake and Hannah fight this battle! Following infusion day, we repacked our bags and flew out to Washington DC for the annual JA Conference. The Florida Chapter Arthritis Foundation had sent 12 families to this conference. It is always such an amazing experience to be surrounded by 1,000+ people who all "get it". I spent several days listening carefully to presenters from across the US to share the very latest in treatments of JRA, sharing my story with others, and consulting with a few of the best pediatric rheumatologists in the country. I feel assured that we are doing everything we can to help Jake and Hannah slow down the progression of this disease. I like to know what's ahead and be prepared for the next steps. I am concerned and scared that there is NOT anything past Actemra. Our option will be to be part of a clinical study. (I'm not sure how I feel about letting my children being the ones to test it out..... We'll cross that bridge when we get there.)</span><br />
<span style="font-size: small;"> </span><span style="font-size: small;"> </span><br />
<span style="font-size: small;">Even more reasons why we all need to speak to our local Congressman and let them know <i><b>arthritis is not ok!</b></i> We can't possibly accept that it's ok to cut research dollars which will result in fewer opportunities for new biologic medications. I don't want to let go of my dream....<i><b>FINDING A CURE for ARTHRITIS! </b></i></span><span style="font-size: small;">Spending those few days in Washington DC was the BEST! Jake and Hannah were able to reconnect with JRA buddies and be assured that are not alone with living with JRA. Hannah asked me almost everyday, Mommy, why are our JRA friends like our best friends?"</span><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpF2fWm597ZUUe8qnSEbuR93a3kVnFk8W7GVZ_YE14CeLNvnN0JUPadknBaoeRIHnGTC0Y506DztUiCv6gDAL1r6S0cjx-NJLGpocVrib_FM_Z74I1GytaPcVNPX0SlJYQoduhbyM_2yLJ/s1600/img_4694.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="251" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpF2fWm597ZUUe8qnSEbuR93a3kVnFk8W7GVZ_YE14CeLNvnN0JUPadknBaoeRIHnGTC0Y506DztUiCv6gDAL1r6S0cjx-NJLGpocVrib_FM_Z74I1GytaPcVNPX0SlJYQoduhbyM_2yLJ/s320/img_4694.jpg" width="320" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFuXjITQUMXQikfv5wnRXDMEHemIb9h1TqbciGwQh9jY7rvlwmvl2QcsDwwTXfckKNLfwIIoiELzq-cTAqe5CvquQfXS0C4th392BJm_IDejdlWKyaXZOqmzr6OgetB2Yh5G8JO4hf_j6y/s1600/img_4696.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFuXjITQUMXQikfv5wnRXDMEHemIb9h1TqbciGwQh9jY7rvlwmvl2QcsDwwTXfckKNLfwIIoiELzq-cTAqe5CvquQfXS0C4th392BJm_IDejdlWKyaXZOqmzr6OgetB2Yh5G8JO4hf_j6y/s320/img_4696.jpg" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Family Night at JA Conference in Washington DC</td><td class="tr-caption" style="text-align: center;"> </td><td class="tr-caption" style="text-align: center;"> </td><td class="tr-caption" style="text-align: center;"> </td><td class="tr-caption" style="text-align: center;"> </td><td class="tr-caption" style="text-align: center;"> </td><td class="tr-caption" style="text-align: center;"> </td></tr>
</tbody></table><span style="font-size: small;">Jake and Hannah's favorite part of summer was spending a month with Grandma and Grandpa in TN. I don't know if it was the 4-wheelers, good country air or the love from Grandparents, but I almost began to wonder why we are going to Shands every 14 days for infusions?? Jake did amazing in TN and it really gave us hope that Actemra may just be what he needed for some much needed relief! Hannah did not feel as well as Jake, but being pampered from Mommy and Grandma wasn't so bad either! </span><br />
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<span style="font-size: small;">I feel like we just got home and summer is over. Our family is ready to begin our newest adventure--- <b>Homeschooling.</b> For MANY reasons, we have decided to try something new in hopes it will be better for Jake and Hannah. They are both super excited and don't have any reservations about missing happenings at LCS. The flexibility and being able to work around medical appointments, infusions (every 14 days), flare up's and illnesses is just one of the advantages of homeschooling. We are beyond fortunate to have been placed with the most amazing Hospital Homebound teacher, Miss Nancy. I will NEVER have to explain anything, she has lived with arthritis as a young child herself and battled the disease as well as lymphoma several times. She understands being nauseous a few days after Methotrexate shots, and the hyper moods after bursts of steroids, the lack of concentration during a flare and the sudden fevers and quick illness onsets. I am looking forward to this new Homeschool adventure and praying Jake and Hannah will benefit from the Hospital Homebound program.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSL9f6MzEFi3GnYaaguy5dKLJz0VrshbLbOT5zuMki-N-m8KQd1wDqcB5eZYjUzaqIwijnMEFTQxj6jERPwENuEI8cuu2PppZOorkqXDtV8qZI26W4LydI2FgV1LnFXdNxGr_lY77BBbN_/s1600/img_4422.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSL9f6MzEFi3GnYaaguy5dKLJz0VrshbLbOT5zuMki-N-m8KQd1wDqcB5eZYjUzaqIwijnMEFTQxj6jERPwENuEI8cuu2PppZOorkqXDtV8qZI26W4LydI2FgV1LnFXdNxGr_lY77BBbN_/s320/img_4422.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The Sloan Siblings Raising their Hands Against Arthritis! </td></tr>
</tbody></table>Anonymoushttp://www.blogger.com/profile/13405391515898480443noreply@blogger.com3tag:blogger.com,1999:blog-7195400996232158116.post-53206691160778794062011-06-18T19:40:00.000-07:002011-06-18T19:40:09.083-07:00New Drug & New HOPE for the Sloan Siblings Finally.... the day has come where FDA has approved the <i><b>first </b></i>therapy for children with Systemic Juvenile Rheumatoid Arthritis. April 20, 2011, The U.S. Food and Drug Administration has approved the NEW biologic drug- <b>Actemra</b> or tocilizumab. Actemra's approval for this drug comes after a study of <i>only</i> 112 Systemic JRA children between ages 2 and 17. Eighty five percent of those children who got Actemra had at least 30 percent improvement. It may not sound too exciting, but as a parent who now has <b>TWO</b><u> </u>children who have <b>Systemic JRA</b>-- It is better news to know there is possibly <b>HOPE! </b><br />
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I often struggle with to share or not to share our JRA journey. I'd like to put make up on, get dolled up and walk out the door like "Life is Good". But for the Sloan family that is far from the truth. Although, Jake and Hannah may look great and may certainly not act sick........ Let me say simply..we have MANY stories behind those smiles! The stories are what I choose to keep personal for the most part. Do you really want to know my husband came home this week , unable to talk and was gagging until he threw up. Yes- the news that our son, Jake , is also <b>SYSTEMIC</b> just like our daughter, Hannah. And that we are now going to <b>TRY another NEW drug</b> that only 112 children tried! <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiR5uj0MPlyrc-_rTfcRK1nVAXbmQCplJwPH87GMzexdWW6U9_kRV3jYggTc81jW3tCkOZexZKLIJ9iJIgnicr2lHTxkib1EeNzdegPETLP7XVnl4HkN4lde7E80u8TaqQkualjIzVgcftv/s1600/IMG_1063_0002.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiR5uj0MPlyrc-_rTfcRK1nVAXbmQCplJwPH87GMzexdWW6U9_kRV3jYggTc81jW3tCkOZexZKLIJ9iJIgnicr2lHTxkib1EeNzdegPETLP7XVnl4HkN4lde7E80u8TaqQkualjIzVgcftv/s320/IMG_1063_0002.jpg" width="240" /></a><i><b>Trying</b> </i>to get excited about the opportunity for Jake and Hannah to both get their first Actemra infusion on July 5, 2011. Actemra is the first drug to block the inflammatory cytokine IL-6 or interleukin-6, which also plays a key role in driving the inflammatory process. <b>It is administered as an infusion-</b> <b><i>every </i>1<i>4 days</i> </b>and preferably in combination with Methotrexate. Jake is currently taking Methotrexate , but we choose to discontinue it for Hannah about 2 years ago. ( Hannah was unable to tolerate it regardless of how much we lowered the dosages, added leucouorin and Zofran, ect....) So the thought of Hannah & Jake both on MTX ... let's just say it literally makes me sick! Side affects of Actemra appear to be very similar with the current Biologic's that Jake and Hannah have been taking ( Enbrel, Remicade, Oriencia). I guess we can deal with extra colds, upper respiratory infections, headaches, sore throat, congestion, and diarrhea. But what I <b>HOPE </b>does not occur is the potentially deadly condition known as MAS (macrophage Activation Syndrome). MAS is a complication of systemic inflammatory disorders in children like Jake & Hannah that involves overactive immune cells and can lead to "trouble" very quickly! <i>This is always my fear when Hannah gets sick, and now my new worries for Jake. </i>MAS worries me more than the increased cancer risks! <i>Always HOPING & PRAYING for the BEST as we make decisions for Jake & Hannah! </i><br />
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</i><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwYlPCePRdYCrJQBzG6aGGOWs4jBYbj-Jbj3Zfku8AM4y9ssEiVZ6UKxrN-QMoeImKJAcWOZQ40uNMMlS6RXJHYYMkSERE_keVGDxHLlVHAfgVyFNoro5IheMgClsoQF4d0zf_vUswsjT5/s1600/KGAT_color-1.jpg+color+logo+kids+get+arthritis+too.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="170" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwYlPCePRdYCrJQBzG6aGGOWs4jBYbj-Jbj3Zfku8AM4y9ssEiVZ6UKxrN-QMoeImKJAcWOZQ40uNMMlS6RXJHYYMkSERE_keVGDxHLlVHAfgVyFNoro5IheMgClsoQF4d0zf_vUswsjT5/s200/KGAT_color-1.jpg+color+logo+kids+get+arthritis+too.jpg" width="200" /></a>Monday- I am sending Jake & Hannah to Camp Boggy for 6 days in hopes they will have the opportunity to "forget what they have and feel normal." They are so excited to go away and be surrounded by kids who all understand and can relate to life- <i>the Sloan Siblings Life! </i>I trust the staff and medical volunteers to take care of my children and all the others who also suffer from JRA. When they return-- we will take the next step at the Swamp and start our initial Actemra infusion. With HOPE this new drug may be answers to some relief for Jake & Hannah. Then we will re pack our bags to fly out to Washington DC for the JA Conference. <br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjy1tqRYdSw3CMlQ8_DCmHRuhViJN1ua9WnqRjr7PRZ7gbvas30KU4bJw_ugkw0nM0n8A140QdJokiBX5z8M-HIXpk1SM2MlogbB0US4143TATSUfukBflJgVqEsSlxe_DyVuDUfeVACtf0/s1600/img_9867.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a></div> <br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwgb9Q-lON-It0Gj_8t59QzGANcNCO7ZpoBgd8Zk0yM2-BjU0rEVK0ya8Xch5KXP1bZUL-LVpfGaIFLT6eg83UDOX1E3YQCLFIyU66sK01qEdoaW0KqJq_CyPXqxA3dE2Px6e5t1yRX6Hk/s1600/img_9874.jpg" style="margin-left: 1em; margin-right: 1em;"></a><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwgb9Q-lON-It0Gj_8t59QzGANcNCO7ZpoBgd8Zk0yM2-BjU0rEVK0ya8Xch5KXP1bZUL-LVpfGaIFLT6eg83UDOX1E3YQCLFIyU66sK01qEdoaW0KqJq_CyPXqxA3dE2Px6e5t1yRX6Hk/s1600/img_9874.jpg" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwgb9Q-lON-It0Gj_8t59QzGANcNCO7ZpoBgd8Zk0yM2-BjU0rEVK0ya8Xch5KXP1bZUL-LVpfGaIFLT6eg83UDOX1E3YQCLFIyU66sK01qEdoaW0KqJq_CyPXqxA3dE2Px6e5t1yRX6Hk/s200/img_9874.jpg" width="132" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hannah & Jake </td></tr>
</tbody></table>Bobby and I are holding on to <b>HOPE</b> that Actemra may help Jake & Hannah. <i><b> We appreciate those families and individuals who are continually praying for our children and family.</b></i><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwgb9Q-lON-It0Gj_8t59QzGANcNCO7ZpoBgd8Zk0yM2-BjU0rEVK0ya8Xch5KXP1bZUL-LVpfGaIFLT6eg83UDOX1E3YQCLFIyU66sK01qEdoaW0KqJq_CyPXqxA3dE2Px6e5t1yRX6Hk/s1600/img_9874.jpg" style="margin-left: 1em; margin-right: 1em;"><br />
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<a href="http://www.drugs.com/newdrugs/fda-approves-actemra-tocilizumab-systemic-juvenile-idiopathic-arthritis-sjia-2603.html"><br />
</a>Anonymoushttp://www.blogger.com/profile/13405391515898480443noreply@blogger.com4tag:blogger.com,1999:blog-7195400996232158116.post-56591684732733163502011-06-09T19:31:00.000-07:002011-06-09T19:31:44.296-07:00Sloan Siblings Stomping Out JRA!<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMYaP-bEAjOsmhJ1Z78y8SyLDKrYPDDBMo2V1BQhB5fiSLmLUmkDdaig-vU1UrWQlfdiErSy1Ijp5J0fZR9-q_Ra1JOJ_GGUS0-ow_K2rTCdbGrfV_r-tVS0gzkd0Jj0jxTX_9q90dO95V/s1600/walk+2011+final+collage++abc+-+Page+023.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="491" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMYaP-bEAjOsmhJ1Z78y8SyLDKrYPDDBMo2V1BQhB5fiSLmLUmkDdaig-vU1UrWQlfdiErSy1Ijp5J0fZR9-q_Ra1JOJ_GGUS0-ow_K2rTCdbGrfV_r-tVS0gzkd0Jj0jxTX_9q90dO95V/s640/walk+2011+final+collage++abc+-+Page+023.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"> <i><b>Sloan Siblings</b></i> 2011 Team</td><td class="tr-caption" style="text-align: center;"><br />
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</tbody></table>The past few months were long, busy days as we prepared for Lakeland's arthritis walk. But as May 7 came-- it was worth every effort we each put into the 2011 "Let's Move Together Arthritis Walk". I am so proud of Jake & Hannah for helping to recruit friends from school, church, dance classes and family. The Sloan Siblings team was the largest team and raised over $7,000. A special Thanks to Law Offices of Burnetti, P.A. and The Sports Section for sponsoring Jake and Hannah and providing all our team walkers with shirts. It was incredible to look around and see all the yellow shirts supporting the "Sloan Siblings". It was one of Jake and Hannah's best days! Our family was humbled at the support that was given to Jake and Hannah.<br />
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Arthritis has not only affected our family, but has also affected 46 million Americans, including 300,000 children. Arthritis is the #1 leading cause of disability in the USA. Did you know that 1 in 3 Floridians are living with at least 1 of the 100 types of arthritis, and it is life-threatening in many cases? The generous donations made by family and friends will be used to help further the mission of the Arthritis Foundation which is to improve lives through leadership in the prevention, control and cure of arthritis and related diseases. Eighty three percent of every dollar goes directly into research. Without the support from family and friends- we would not be able to hold on to <b><i>hope that better treatment options</i></b> will be available for adults and children suffering from arthritis and related auto-immune diseases. <br />
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It was my pleasure to serve as Lakeland's walk chair and work under the leadership of Tony Ward- Community Development Director of Central Florida. I am most proud of our Lakeland walk committee. Each and every person contributed in some way or another. It is difficult to do the extra things when we are struggling to take care of ourselves or children who have chronic health conditions as well. But the Lakeland walk committee did it!! We pulled together and it was the BEST walk ever!! <i>Each committee member touched my heart and with their support made 2011 Arthritis Walk successful in Lakeland, Fl. </i>Anonymoushttp://www.blogger.com/profile/13405391515898480443noreply@blogger.com1tag:blogger.com,1999:blog-7195400996232158116.post-43673386639437014592011-04-22T19:34:00.000-07:002011-04-22T19:34:06.059-07:00Family Connections wth JRA? No- I didn't know I'd be raising two children with JRA!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFhF3E9zDUrN-YQ_Xs8wMdHig8WEp9bryN1tc-ntupSah1Pl7xu7nmMrKQaYt-fm5ZGd60qwClBRKmA16unb1cMo-W2Mqa1HWz-yWBw_KrveVrH7nL9tOp9pQUWym-zITDyMpvhyTH3XbE/s1600/IMG_7781.jpg" style="margin-left: 1em; margin-right: 1em;"></a></div><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifnoPuMMK9Whsah0CPE06xqxwdvPM7LCe5XIBBL1Go_FAi7rxtivQcoJJc6TX3cP_3Cin8vNgNCjsh7guCtcKoB_YoNOOB8gMwEhfZ76u7kwLzRPugWB9ascN2kxl3mQQb1nYLlMqc2DDN/s1600/IMG_9783.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"> <img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifnoPuMMK9Whsah0CPE06xqxwdvPM7LCe5XIBBL1Go_FAi7rxtivQcoJJc6TX3cP_3Cin8vNgNCjsh7guCtcKoB_YoNOOB8gMwEhfZ76u7kwLzRPugWB9ascN2kxl3mQQb1nYLlMqc2DDN/s200/IMG_9783.jpg" width="133" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">1.2% chance siblings can both have JRA! </td></tr>
</tbody></table>This is going to be one of those blogs that I am actually venting and sharing a few facts I was able to put my hands on recently. For those of you who know me personally, I am not a chronic complainer and try my best to stay positive. Everyday is a struggle in some way or another raising two kids with chronic disease like Juvenile Rheumatoid Arthritis (JRA) and living with it myself. But when somebody asks me <span style="font-size: large;"><i>"<b>why did you have children knowing they'd have JRA" or "ohh..so it's a genetic disease and runs in the family"</b></i><b>.</b> </span>It really bothers me and hard to let go of those ignorant comments. So this blog is just for me to be able to type out the facts I found and to justify <i><span style="font-size: large;">I did not have children knowing my kids would have JRA. </span></i><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVFgadTiUCEcrXhyphenhyphenFChCPkj_itChp5hQO22DouewyKu31QnMNzhf93hHDCc-ek_kooNjgvpqMONsAmLgkxcIu6X07UGpnE6Mkzu7kr8wV0dCzECH3WmKu8zTWsStxdB91oyu9pvWxTPJwK/s1600/IMG_7788.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0x9fPEoDsDBV_beJiLiBVUKTIssACQ9zVC5Y3niYR1BO8lJy1SPwbHx7ltV8XEdeCBLJu0JB9Mje70Iet6QQ5gpPSlRSXYJbYHdibEJLVmpme8IuGptkPkIO_iCT3MtGbRWSAoZnu5ggD/s1600/IMG_9372.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivz0WolT1020K-eB3Fgrogd0ifjbySefuReoH1Y46EJtBdNums1u6JyAzbf73ZhEKq_nMhgU4H5_jeYxQsiI4W6xQabnGKiNlbxyAzf1jj4KegTMI88EqamFDjBIKOuKE4V-lL0o2FkLFN/s1600/IMG_9561.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a></div><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFhF3E9zDUrN-YQ_Xs8wMdHig8WEp9bryN1tc-ntupSah1Pl7xu7nmMrKQaYt-fm5ZGd60qwClBRKmA16unb1cMo-W2Mqa1HWz-yWBw_KrveVrH7nL9tOp9pQUWym-zITDyMpvhyTH3XbE/s1600/IMG_7781.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a></div><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0x9fPEoDsDBV_beJiLiBVUKTIssACQ9zVC5Y3niYR1BO8lJy1SPwbHx7ltV8XEdeCBLJu0JB9Mje70Iet6QQ5gpPSlRSXYJbYHdibEJLVmpme8IuGptkPkIO_iCT3MtGbRWSAoZnu5ggD/s1600/IMG_9372.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0x9fPEoDsDBV_beJiLiBVUKTIssACQ9zVC5Y3niYR1BO8lJy1SPwbHx7ltV8XEdeCBLJu0JB9Mje70Iet6QQ5gpPSlRSXYJbYHdibEJLVmpme8IuGptkPkIO_iCT3MtGbRWSAoZnu5ggD/s320/IMG_9372.jpg" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sloan Siblings both living with JRA! </td></tr>
</tbody></table>When I meet someone new who learns Jake and Hannah both have Juvenile Rheumatoid Arthtritis. I expect the typical response, "didn't know kids can get arthritis" and "but they look so healthy". Now that Jake and Hannah both wear splints everyday- there is a visual cue for others that something is there?? Seems like we are explaining more and more to strangers everyday that Jake & Hannah both have JRA. Many people ask if anyone else in the family has arthritis, too? I cringe and casually say "yes". Several people have gone the next step and asked who in the family, so I have to share my mom and myself. Then.... these same people automatically assume JRA is a genetic disease and it was a given my kids would have JRA. This really upsets me....... NEVER in my life did I dream I'd be raising two kids both with JRA (Polyarticular and Systemic JRA). It wasn't a choice Jake and Hannah had and it certainly wasn't a great risk of me having children with JRA. I have accepted it was simply God's plan for me.... Why? I don't understand that yet- but trust it was His plan despite what my chances were of having two children with JRA. <br />
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Here's what I found in a recent article from Kids Get Arthritis, Too,Volume 10, 2010 issue. An article Linda Brown wrote on <u>JRA: All in the Family?</u> We already know that there is 300,000 children with JRA. That is one in 1,000 children under the age 16 has JRA. A new study was done by Dr. Prahalad showed that there is a 1.2 percent greater risk of a sibling getting JRA (when there is already one child in family with JRA). <b>"So there is a 98 percent chance that the family would NOT have another child with arthritis." </b> As for our family, Hannah wasn't diagnosed until she was 2 1/2 years old and she was our second child. NOBODY wanted to believe me that Jake had arthritis, too! Yes -I was told..."No, you can't have two kids with JRA". Well, maybe Bobby and I should have played the lottery because we have two kids with JRA. We were not fortunate to fit into the 98 percent who would not have another child with any type of arthritis. <br />
First Cousins..... Dr. Prahalad found the risk drops to six times greater than the general population. (That would be about 1/2 percent chance that 2 first cousins would have JRA). I'd like to say this should not be of any concern for parents and adults who are considering having children with auto-immune diseases like arthritis in their immediate family. But we are living proof- it can happen and did happen to The Sloan Family! Many parents who have a child with JRA ask me what I think about them having another child and they worry will they have another child with JRA? Here is what researchers know as of today-- <b>98 percent chance that you won't have another child with arthritis! </b>All I can say is thank goodness Bobby and I got my girl and we stopped at 2 children!! Don't think we could afford any more medical costs and mental status of me would be a scary thought!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioy6kZ6m_ygFX0aja53L4Otw5rXmYIC7jzJmjVrsvwVLtDdISuXOKDt790If9vSy_W_vzTrFCeD2ykJfuEKOTYnLLWCeoirf0DkgP81weXhu3spzHh8UUPyDGGvxfjUhq3_JfTXJhZ2F6q/s1600/IMG_1145.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioy6kZ6m_ygFX0aja53L4Otw5rXmYIC7jzJmjVrsvwVLtDdISuXOKDt790If9vSy_W_vzTrFCeD2ykJfuEKOTYnLLWCeoirf0DkgP81weXhu3spzHh8UUPyDGGvxfjUhq3_JfTXJhZ2F6q/s200/IMG_1145.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jake & Hannah both getting infusions at Shands Hospital. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivz0WolT1020K-eB3Fgrogd0ifjbySefuReoH1Y46EJtBdNums1u6JyAzbf73ZhEKq_nMhgU4H5_jeYxQsiI4W6xQabnGKiNlbxyAzf1jj4KegTMI88EqamFDjBIKOuKE4V-lL0o2FkLFN/s1600/IMG_9561.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivz0WolT1020K-eB3Fgrogd0ifjbySefuReoH1Y46EJtBdNums1u6JyAzbf73ZhEKq_nMhgU4H5_jeYxQsiI4W6xQabnGKiNlbxyAzf1jj4KegTMI88EqamFDjBIKOuKE4V-lL0o2FkLFN/s200/IMG_9561.jpg" width="133" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Something we all have shared together.... SHOTS!</td></tr>
</tbody></table>The article also shared that if you were found to be one of the few siblings to have JRA- that the age they develop the disease tends to be similar. He also found if you have two siblings in a family with JRA, they more often have the same subtype of arthritis than different kinds. I can't stand the thought that Jake complained & complained as a young child about joints hurting, asked to pray for his achy joints EVERY night and thought he hurt like his Grandpa and sister for a very, very, very long time! So I can't really say what age it all started for Jake? His diagnosis was delayed...... maybe this is why we are having a hard time controlling the disease?? <b>EARLY AGGRESSIVE TREATMENT </b>is the way to treat this monster disease! Unfortunately, Jake didn't have that chance because NOBODY wanted to believe me and him that he was hurting and really did have arthritis like his baby sister, mom and Grandma! <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFhF3E9zDUrN-YQ_Xs8wMdHig8WEp9bryN1tc-ntupSah1Pl7xu7nmMrKQaYt-fm5ZGd60qwClBRKmA16unb1cMo-W2Mqa1HWz-yWBw_KrveVrH7nL9tOp9pQUWym-zITDyMpvhyTH3XbE/s1600/IMG_7781.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFhF3E9zDUrN-YQ_Xs8wMdHig8WEp9bryN1tc-ntupSah1Pl7xu7nmMrKQaYt-fm5ZGd60qwClBRKmA16unb1cMo-W2Mqa1HWz-yWBw_KrveVrH7nL9tOp9pQUWym-zITDyMpvhyTH3XbE/s200/IMG_7781.jpg" width="133" /></a><br />
One of the things that bother me the most is..... will Jake and Hannah be able to have a family themselves due to all these many years of heavy drugs that I choose to give them and will their kids also inherit JRA?? There has not been any studies on JRA kids having children of their own inheriting JRA. At this point researchers know more of sibling pairs than parent-child pairs with JRA. Like I said, I should of played the lottery! What were my chances of me having JRA just like my mom and then having a child with JRA, then another child with JRA?? <i>So for those people who are inconsiderate..... I did not choose to have a family knowing they'd have JRA! </i><br />
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This is why I am committed to the Arthritis Foundation and support research. I want to have grandchildren one day and don't want them to have the same life that Jake and Hannah are living everyday! We need to find a cure and better medications for these precious children!<br />
<span style="font-size: x-large;"><b><i>Arthritis is the #1 Disability in our country and is simply Not acceptable!!</i></b></span>Anonymoushttp://www.blogger.com/profile/13405391515898480443noreply@blogger.com10tag:blogger.com,1999:blog-7195400996232158116.post-3774328260955633112011-03-31T19:55:00.000-07:002011-03-31T19:55:58.761-07:00The Sloan Siblings and family visit capitol Hill to share our JRA Journey.<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9Gt9muADCxeGoQFyMsBFctQxRcQ6NYOufxO1QotmeQZgZ8Q-h6gJxI1AXMyhESTXEZrSSKqqcE0L4IaZcbxV71S_v5ZkSXM-CicAe34TwJPCoOs6m1pAJbBfN_mfswv93rkSqcl3FeMJO/s1600/img_0476.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlBKbRATv7t6p-FISAIMX8csRcEUz5DPc9JFKmq7IMIiaaPnFt3Gkejz9M73exp-bfwJuFh3P3QDiSN8SyRaNqAxz1YTNmTvsmd1Uyq675KHZ4XQLbEJqVXHPxQHVeklANqcC9m-kHIIgZ/s1600/img_0451.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlBKbRATv7t6p-FISAIMX8csRcEUz5DPc9JFKmq7IMIiaaPnFt3Gkejz9M73exp-bfwJuFh3P3QDiSN8SyRaNqAxz1YTNmTvsmd1Uyq675KHZ4XQLbEJqVXHPxQHVeklANqcC9m-kHIIgZ/s640/img_0451.jpg" width="425" /></a><br />
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<span style="font-size: large;">Our family had the opportunity to visit Washington D.C. to meet with members of our Congress to share our JRA journey. For those of you that know me- it shouldn't surprise you to hear that the <i>Sloan Family is raising our hands & voices against arthritis.</i> It was amazing to be surrounded by 312 people representing 47 states , including 80 children who all believed the same thing! <span style="font-size: x-large;"><u><i><b>Arthritis is unacceptable! </b></i></u> </span></span><br />
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Our first afternoon in D.C. consisted of our family participating in a home town radio interview. Bobby seldom has the chance to be with us and participate in arthritis events- so he shared how arthritis impacts his life and his family's life. We also attended a new advocate training session that covered information about political and legislative processes. Jake and Hannah attended kid's group where they learned about government and how to advocate for themselves. Lots of information to take back to the hotel room and prepare for our U.S. Senate appointments the next afternoon. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgH7pcqDzEu9siAMAiQ_OjQoEIVXswajvV8rPUmxHa8Sdmc5F8FAKVzRXLv8cdXtywD_9hcNJP1GuG4yKxwV9bDE2AXHLyMxddfhABng0Yx40uVf82rj4QtOLlEy3rbUHVLpNYGqk1YASe3/s1600/img_0453.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgH7pcqDzEu9siAMAiQ_OjQoEIVXswajvV8rPUmxHa8Sdmc5F8FAKVzRXLv8cdXtywD_9hcNJP1GuG4yKxwV9bDE2AXHLyMxddfhABng0Yx40uVf82rj4QtOLlEy3rbUHVLpNYGqk1YASe3/s320/img_0453.jpg" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The "Sloan Siblings" ready to share their story!</td></tr>
</tbody></table><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-B1qJ8aR8xxsXakBKPlgTiOP8GwJMHOdXe-QDXKTka4eyf9TC1gdY9fkReCqvAYw1R98x_s6Db4z6ICwZH5tGRznuI-aW3z7NQ_RtCgZf-41Et2nxBNDVV8e8zvvwoaz_9ODjoW2VuMNE/s1600/img_0469.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-B1qJ8aR8xxsXakBKPlgTiOP8GwJMHOdXe-QDXKTka4eyf9TC1gdY9fkReCqvAYw1R98x_s6Db4z6ICwZH5tGRznuI-aW3z7NQ_RtCgZf-41Et2nxBNDVV8e8zvvwoaz_9ODjoW2VuMNE/s320/img_0469.jpg" width="320" /></a>Bright and early we begin our second day with Chrsitophrer Kush of Soapbox Consulting, leading an interactive training session to help us conduct successful meetings with our Senators, Representatives and their staff. Within a few hours, we were ready to take the metro (subway) to Capitol Hill to share our story. Our first appointment was with Senator Bill Nelson with his legislative correspondent, Gene Schlesinger. It was great to have the opportunity to share our story and to tell them publicly what we need! I wasn't able to hold back the tears. It was a lot harder to share our story than I thought it would be! Gene listened closely as our family expressed concerns about pain, disability and cost of arthritis is unacceptable!I shared our personal story as I have had JRA since 3 years old and then to raise both of our children with JRA is beyond difficult. Bobby was there by my side when I couldn't choke out any more words- he moved on the business side of the meeting asking for just a few simple things from our government. Overall it went well and I am confident that Gene learned something about JRA today. <br />
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Our second appointment was with Senator Marco Rubio with Sally Canfield, the legislative director. She was such a delightful lady! Jake and Hannah both talked with her as she asked them many questions about living with JRA. Jake told her that friends make fun of him for wearing his splints and that he hates having arthritis. We kindly asked for consideration of the following:<br />
1) Join the Congressional arthritis caucus<br />
2) Make arthritis a national priority and send President Obama a letter <br />
3) Continue to fund arthritis research through the NIH<br />
4) Put arthritis on the list of diseases researched through the Congressional directed medical research program. <br />
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Another busy day ahead for the Sloan Family on Capitol Hill. We had three appointments with House of Representatives, Rep. C.W. Young, Rep. Dennis Ross and Rep. Ted Deutch. Unfortunately, Jake woke up today not feeling well. It was a long busy day of walking the halls on capitol Hill, but we continued to do so and had another day of successful meetings. Jake and Hannah did amazing, too! I was so proud of Jake for speaking out and telling Congress exactly how he feels. At one meeting- someone said, "it must be hard to have days when you don't feel well'. Jake replied, "I don't remember when I had a good day". <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpLSr8f8VtVbj9HWbRqe5EJi28krKEl3fZSeAR7-Qq17UxcvjiTpqbZVyMsfiR6EfmuXjayTS5h75hEKy2IvJl3zUFjxJpsCAS5Ep-rre33Gg3J_Ayrzgmu4cbsh1Raj-Br34HwqU1N-6J/s1600/img_0498.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpLSr8f8VtVbj9HWbRqe5EJi28krKEl3fZSeAR7-Qq17UxcvjiTpqbZVyMsfiR6EfmuXjayTS5h75hEKy2IvJl3zUFjxJpsCAS5Ep-rre33Gg3J_Ayrzgmu4cbsh1Raj-Br34HwqU1N-6J/s400/img_0498.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The Sloan Family with Rep. Dennis Ross.</td></tr>
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We get back on the plane and have a few quite moments to reflect our trip to Washington D.C. I would do it again and again and again! Our government officials that we elect are going to continue to hear from The Sloan Family. My children are counting on me to be their voice and attempt to find better medications and most of all to continue research to find a cure. <span style="background-color: #f3f3f3;"> </span><i style="background-color: #f3f3f3;"><b>Thank you Arthritis Foundation for trusting our family to be the voices from Florida and the 50 million Americans who suffer from Arthritis everyday of their lives! </b></i><br />
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I encourage you to become an Advocate, if you are not already an advocate through the Arthritis Foundation. Wouldn't it be nice to be able to take a pill form of a biologic drug? We need our government to continue to fund research through NIH and help us get a few steps closer to this new biologic pill, rather than infusions and shots. I need to know is there really a genetic link with arthritis? Most importantly, how can we prevent Jake and Hannah's children from also having JRA? Why do 12 of our states not have any pediatric rheumatologists to treat children with JRA? Arthritis is unacceptable to me and we need the government to make arthritis a national priority, too!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9Gt9muADCxeGoQFyMsBFctQxRcQ6NYOufxO1QotmeQZgZ8Q-h6gJxI1AXMyhESTXEZrSSKqqcE0L4IaZcbxV71S_v5ZkSXM-CicAe34TwJPCoOs6m1pAJbBfN_mfswv93rkSqcl3FeMJO/s1600/img_0476.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9Gt9muADCxeGoQFyMsBFctQxRcQ6NYOufxO1QotmeQZgZ8Q-h6gJxI1AXMyhESTXEZrSSKqqcE0L4IaZcbxV71S_v5ZkSXM-CicAe34TwJPCoOs6m1pAJbBfN_mfswv93rkSqcl3FeMJO/s320/img_0476.jpg" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">President Jake Sloan</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjri5sxhshwNuBEzyq30pgnLHKIQ13NyhN31GG-ZOZ2AYCmPpjmjSxR2C5UfOVpCXJDoYCO9vFe6WOb4S5M77l7p8BrOh01L-1rJeaYvV4GillS9HK-sNDIrfbt4W-WpJPP0yq7PxCB_bF9/s1600/img_0478.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjri5sxhshwNuBEzyq30pgnLHKIQ13NyhN31GG-ZOZ2AYCmPpjmjSxR2C5UfOVpCXJDoYCO9vFe6WOb4S5M77l7p8BrOh01L-1rJeaYvV4GillS9HK-sNDIrfbt4W-WpJPP0yq7PxCB_bF9/s320/img_0478.jpg" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Future First lady..Maybe??</td></tr>
</tbody></table>Anonymoushttp://www.blogger.com/profile/13405391515898480443noreply@blogger.com4tag:blogger.com,1999:blog-7195400996232158116.post-75519818077016684902011-03-11T20:23:00.000-08:002011-03-11T20:23:09.177-08:00Rotavirus Hits The Sloan Siblings......The day started off perfectly! We were headed to Orlando for our " JRA Family Picnic". Jake and Hannah were excited to see their friends and meet a few new friends who also have JRA. We could not have asked for a better day, weather was perfect, good food,and great company. CamoKids team was recognized with trophies for raising more than $10,000 in 2010 Arthritis Walk. Several hours passed as all of us mom's and dad's sat along the benches talking away while our kids played and shared similar stories to each other. After a few hours, it was time to say good bye and head home. It was a long hour and 20 minutes home....Hannah fussed and cried almost the entire way home about her tummy hurting. <i>This is nothing unusual-- her tummy is often a area that is very painful and after increased activity it seems to hurt even more. </i><br />
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After an hour of being home----- Rotavirus kicked in high gear and didn't stop! Hannah first had diarrhea and then she talked about her tummy hurting and how it was grumbling loud. Of course this all had to start at bedtime- everyone is tired and I hadn't even unpacked from our Washington DC trip. Within minutes from her first episode of diarrhea , the vomiting began and continued for 19 hours straight. Poor Hannah threw up every 5-15 minutes throughout the entire night and Sunday morning. She was so sick, weak and exhausted. Many times she was having diarrhea and throwing up at the same time. Of course, fever always comes with illness. When my husband finally got home (worked 24 hours then goes straight to church) I called the pediatrician. He recommended me taking Hannah to the Emergency Room if it didn't slow down within the next 3-4 hours. Nothing slowed down and I wasn't able to get any fluids to stay down more than 5 minutes. My husband and I made the decision to go ahead and take her to the emergency room for IV fluids and meds to help her to stop vomiting. As I was carrying her to the car-- she rolls her eyes back and tells me "she can't move her fingers and they were tight". I looked at them..... I panicked! I yelled for my husband to come.....neither one of us could open her fingers, they were so contracted and very tightly closed in her palm of her hands. Then she opens her eyes and says in a panicked voice, "Mommy, it's happening to my feet and knees, too". She begs for me to stop it from happening. I had no idea what was going on...... I thought to myself, did she have a stroke on me?<br />
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I couldn't get to the emergency room fast enough. She was in/out of consciousness in between throwing up on route to the ER. Luckily, the staff was kind and let us go directly to a room without any wait. The usual questions are asked, medications discussed and it was obvious I should have been here many hours ago. Nurses had a difficult time starting a IV to administer fluids and zofran for nausea. On a good day, Hannah has bad veins and this is always challenging for nurses to start IV's. Finally, after several attempts.... IV started to initiate blood draws and get some fluids in her. Rectal swabs needed to properly diagnosis what we now know was rotavirus. (Hannah didn't like this- but who would?) Meanwhile, the doctor examined Hannah and asked me how I felt about sending her to Shands for hospital admission?? I assured her LRMC will be able to give her fluids and she'll be fine. Within an hour, the doctor shared with me that she was positive for Rotavirus and needs to be admitted. By now.....Hannah is finally resting and the vomiting has slowed down. <br />
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I was ok with rotavirus...but wanted answers as to why did her hands and feet contract up so tightly?? This was something new and I had never seen his happen to Hannah. As more tests came back- it looked like her calcium was low and may have caused tetany. Neurologic symptoms can occur in severe cases of rotavirus which results of electrolyte imbalance (i.e., low calcium). Hannah was given calcium, potassium in her IV as we wait for a bed available in pediatric unit. <br />
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As the doctor kept checking on her, she explained more about rotavirus to me. It was then that I figured that Jake has it, too. Jake hadn't been feeling well, abdominal cramps, throwing up after some meals and diarrhea. <i><b>I totally contributed this to his new medications.</b></i> I had even researched more about Orencia and figured it was one of those lovely side effects. Jake had his first dose of Orencia about a week and 1/2 ago. I <u><b>NEVER</b></u> thought he had any type of stomach bug or rotavirus. The guilt kicks in.....and then I look back and feel bad that we walked all over capitol Hill with him complaining about his tummy, came home throwing up and sent him to school the next day. I knew if I kept him at home his teacher or school administration would think I kept him home because he was tired from trip. I find myself constantly evaluating and trying to put pieces together....... Why is it happening? What meds did we change? Is this part of JRA or something else? This time I was absolutely wrong- had no idea Jake was sick and positive for rotavirus!<br />
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The norm to expect from rotavirus is fever and vomiting for 2-3 days, then diarrhea for the next 4-5 days. The virus typically lasts 10 days. The common treatment is simply to replace fluids and electrolytes. Dehydration is the biggest concern for the children without any other medical issues. For children like Jake and Hannah who have a immunodeficiency, it may cause persistent infection lasting for weeks to months. This is exactly what Jake and Hannah's pediatrician shared with us-- it can take several weeks before kids are back to themselves, expect decreased appetite. <i>And what always comes with a common illness..... A JRA fare-up! </i>There is a rotavirus vaccine, but this is one of the many that Jake and Hannah can NOT have ever because of the medications they both take and because of immunodeficiency diseases. <i><br />
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<tr><td class="tr-caption" style="text-align: center;">Hannah's favorite visitor- her brother, Jake! </td></tr>
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Four days later, Hannah was discharged from hospital. Happy to return to home, but still not feeling the best! Jake returned to school, per doctor's advice. We certainly hope we didn't share this virus with any friends at school or especially our JRA family and friends. These poor kids have such a suppressed immune system, not as easy to fight a common cold or flu or a virus like this one. Nobody wants to have rotavirus, I am sure of that! <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGRCOtfI_tSJNX1iGMLmb3m-9efuh7pB7ziQWqLUsl91nRKvF4KSYUhpvhyphenhyphenR06l1ZGw-hIUOyuxicE5H4tiLKClzcHcMDSdqSnH1qf8kSFcO68uzrtVtk0K51O-YxaZSUQjdka9mDFib6z/s1600/img_1254.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGRCOtfI_tSJNX1iGMLmb3m-9efuh7pB7ziQWqLUsl91nRKvF4KSYUhpvhyphenhyphenR06l1ZGw-hIUOyuxicE5H4tiLKClzcHcMDSdqSnH1qf8kSFcO68uzrtVtk0K51O-YxaZSUQjdka9mDFib6z/s640/img_1254.jpg" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hannah was happy to be headed home! </td></tr>
</tbody></table>Anonymoushttp://www.blogger.com/profile/13405391515898480443noreply@blogger.com5tag:blogger.com,1999:blog-7195400996232158116.post-87498197039770599062011-02-12T11:03:00.000-08:002011-02-12T11:03:14.564-08:00A Visual Reminder About "Aurthur"<i><b><span style="font-size: x-large;">Splints....</span>.</b></i><br />
The past two weeks Jake and Hannah have been asked repetitively, "why are you wearing splints"? I think they have had mixed emotions about wearing their splints. Initially, it was kinda cool and they could take it on and off, as desired. But within a few days it became<i> uncool</i> to have splints and only a visual reminder about "Mr. Aurthur". They have talked about and rehearsed as to what they'll tell their friends. I have done my best to encourage them to tell the truth--- "<i>tell them you have arthritis and this splint is to help with my pain</i>". Many adults have even questioned me about why Jake and Hannah both are wearing splints with arthritis. What people may not understand is that splints help keep joints in the correct position and relieve pain. When Jake and Hannah's joint is becoming deformed (bent in the wrong position) or it is at risk for it, a splint may help position or stretch the joint gradually back to its normal position or try to keep it in a normal position. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZjEOV9rGA8V9xpZjvdrsmkF6qKeEotFDc8Hd4i3Y7goO_AWIUs0R2cMvYy9iqjF-ZuEnS2Vi_YDZio6GzTiz3AAYSDMV_-X6SK5Z-jvR3HYCR3mzBfAG9MuTfImBvqilpK0FCW3kZs3Tv/s1600/img_9527.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZjEOV9rGA8V9xpZjvdrsmkF6qKeEotFDc8Hd4i3Y7goO_AWIUs0R2cMvYy9iqjF-ZuEnS2Vi_YDZio6GzTiz3AAYSDMV_-X6SK5Z-jvR3HYCR3mzBfAG9MuTfImBvqilpK0FCW3kZs3Tv/s320/img_9527.jpg" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hannah wearing her wrist splint & ring finger splints</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEil0ELvrOKcvi6qEPun3EkilZ3HRvXVILpChzw8usJs_yzmZFDtQCsz6BrvGxwaI8eJcxOXEJymqcyxjBZrrTuTa9pncanAQwKFnlKIvSIQ33vsueM25GvWO0gLYsQFUrr5TQc3utPqkilA/s1600/img_1198.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEil0ELvrOKcvi6qEPun3EkilZ3HRvXVILpChzw8usJs_yzmZFDtQCsz6BrvGxwaI8eJcxOXEJymqcyxjBZrrTuTa9pncanAQwKFnlKIvSIQ33vsueM25GvWO0gLYsQFUrr5TQc3utPqkilA/s320/img_1198.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jake thought it was neat how his splint was costumed made </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8sF-jGB_RMf-EAerKkXCx_13snfxzpeCtLZMSMODEvCJ_FhFIIVtPHfdDGmKsnM-47MbY4gWFfQko8eFbLM3DjL6Q4kCZytd4uHxxkBWJ6fyCZDfdYlIBLI0ea72-SOLEf0hIjePvG9x6/s1600/img_1200.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8sF-jGB_RMf-EAerKkXCx_13snfxzpeCtLZMSMODEvCJ_FhFIIVtPHfdDGmKsnM-47MbY4gWFfQko8eFbLM3DjL6Q4kCZytd4uHxxkBWJ6fyCZDfdYlIBLI0ea72-SOLEf0hIjePvG9x6/s200/img_1200.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jake sporting his day time splints.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhB_XwEMFxx-DADS5kmRU9ROU-Lmqtqo3HN6uDRyu6otjtv_JDfLAezuTIvSyD8CiKoyiEmqD192kUI2n7T0FlhzkkP_xVKCiLaIoPZKadbllKuC3V_A8lbwjVZvnLwj5X1Fh2_066eWlH9/s1600/IMG_9357.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="133" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhB_XwEMFxx-DADS5kmRU9ROU-Lmqtqo3HN6uDRyu6otjtv_JDfLAezuTIvSyD8CiKoyiEmqD192kUI2n7T0FlhzkkP_xVKCiLaIoPZKadbllKuC3V_A8lbwjVZvnLwj5X1Fh2_066eWlH9/s200/IMG_9357.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Not as comfy as they look!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbABhjtdFXJg-U7PzD7QDRmimwT3PzyoOypd2Jk5aRN55rxdQDCDWbpb99NDHmiGboftOTk9Q4_qyqNh5q48aLMIxBkME_QDFnVCDQCa1hIXwtXQeMHrg8SXoEpg8YUF4tUCnt6jzYt11K/s1600/IMG_9351.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="133" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbABhjtdFXJg-U7PzD7QDRmimwT3PzyoOypd2Jk5aRN55rxdQDCDWbpb99NDHmiGboftOTk9Q4_qyqNh5q48aLMIxBkME_QDFnVCDQCa1hIXwtXQeMHrg8SXoEpg8YUF4tUCnt6jzYt11K/s200/IMG_9351.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Night Splints</td></tr>
</tbody></table>This month Jake and Hannah both got splints. Jake got 5 new splints, which include bilateral wrist splints for day time usage, and bilateral wrist splints for night usage and a left foot splint. Hannah got a right wrist splint and ring splints for her two fingers on her right hand. <br />
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Not sure how compliant kids have been wearing their splints as ordered by their rheumatologist. Jake is now asking "can he wear just one splint at night or can he skip it tonight?" Hannah has lost a ring splint from last week's dance class. I have already heard the many excuses as to why they don't want to wear their splints. Some of these complaints include: it's uncomfortable, sweaty, hot, can't write with them, can't drink with them, can't wash hands with them, the fastners get hooked on clothing, it hurts more. The biggest complaint is the appearance of the splint generates many comments from people (friends and adults).<br />
<span style="font-size: small;"><i><b>This makes Jake and Hannah feel different from others! </b></i></span>Anonymoushttp://www.blogger.com/profile/13405391515898480443noreply@blogger.com2tag:blogger.com,1999:blog-7195400996232158116.post-61779941824667041202011-02-12T09:46:00.000-08:002011-02-12T09:46:05.141-08:00Another Attempt To Stop" Mr. Aurthur"<div class="separator" style="clear: both; text-align: center;"></div><br />
<div class="separator" style="clear: both; text-align: center;"><b><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCI8DhDmAfD8ZQEBbWYEnK9YengRhjQ84AJ5zOvVp4iVd3Zk4UIHGd5b-1vjTAzbwFtR5LeDdiZjDuZ_bDQPUj6wvFIRwlnwJtYa7x4dBai3NLld9Se-wrZQpEUFpAxX2kKBSdiU0CF8gI/s1600/img_1210.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><br />
</a></b></div><b> The "Sloan Siblings" did it</b>! They both got their Remicade together at Shands on February 9th. I have to admit, I was anxious about having Jake & Hannah both getting their IV's together and trying to figure out how to split myself in half and be there equally for both of them. They both did great-- I even left them in the infusion room for a Wendy's french fry run. <br />
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<div class="separator" style="clear: both; text-align: center;"></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOLLSiXCWkdQUN07eZlJbyj9JyHEcYwqwN4_b4yg9paNLDegzab3JYJd3AfzuSAnFx654v_uVaoDw0Mh5ghYoOdLfjKDgb4bEQoAenMO-NI8Yx7GBNtyHBPzqmO9u3lI78bBEN4QpdxRiE/s1600/img_1214.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOLLSiXCWkdQUN07eZlJbyj9JyHEcYwqwN4_b4yg9paNLDegzab3JYJd3AfzuSAnFx654v_uVaoDw0Mh5ghYoOdLfjKDgb4bEQoAenMO-NI8Yx7GBNtyHBPzqmO9u3lI78bBEN4QpdxRiE/s200/img_1214.jpg" width="200" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgn9rpL_6DBjnsZ7yinHq_RdHbcFtG2Ow3sPNwVjHh5dptvg9njLPpTVOCGowneEUcbxU9_j6T7Wl0G8e8yAXsE5nOci2TIDpEdRadAvN9yc8Shnf1h1g0H_osgju2gfnx5r4IDX2NYjNVO/s1600/img_1209.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgn9rpL_6DBjnsZ7yinHq_RdHbcFtG2Ow3sPNwVjHh5dptvg9njLPpTVOCGowneEUcbxU9_j6T7Wl0G8e8yAXsE5nOci2TIDpEdRadAvN9yc8Shnf1h1g0H_osgju2gfnx5r4IDX2NYjNVO/s200/img_1209.jpg" width="150" /></a>As Hannah begins her <i>start</i> of Remicade treatment today. We find out that Jake will be <i>stopping</i> Remicade after today and moving on to another treatment option. Trying to be hopeful that Remicade will be successful for Hannah without side effects. Dr. M tried to encourage me to try not to compare Jake and Hannah and be hopeful for Hannah's treatment. Jake has failed two out of the three Biologic medications (Enbrel and Remicade). So the next step is Orencia (abatacept). Orencia is saved to use with patient's who fail TNF medications. Orencia has not been on the market for very long and has limited effects of the medication available. And what I do know from other children's experiences- it SCARES me! Orencia is not a TNF blocker as Enbrel, Remicade and Humira is. It is a T-cell co-stimulation modulator ( T cells play a prominent role in inflammation). It blocks the signal in the blood that is necessary for T-cells to do their damage. I'm not thrilled about putting Jake on Orencia but we don't have many options. The good news is that Jake can stop taking Enbrel shots and Orencia is a much faster IV medication. He is happy to have 3 less shots a week. He'd like to get rid of Methotrexate shot- but no luck with that! We'll still have to make the drive to Shands for infusions- but less time in the infusion room for Jake. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCI8DhDmAfD8ZQEBbWYEnK9YengRhjQ84AJ5zOvVp4iVd3Zk4UIHGd5b-1vjTAzbwFtR5LeDdiZjDuZ_bDQPUj6wvFIRwlnwJtYa7x4dBai3NLld9Se-wrZQpEUFpAxX2kKBSdiU0CF8gI/s1600/img_1210.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCI8DhDmAfD8ZQEBbWYEnK9YengRhjQ84AJ5zOvVp4iVd3Zk4UIHGd5b-1vjTAzbwFtR5LeDdiZjDuZ_bDQPUj6wvFIRwlnwJtYa7x4dBai3NLld9Se-wrZQpEUFpAxX2kKBSdiU0CF8gI/s320/img_1210.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jake's quite as he awaits for the day to finish!</td></tr>
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Overall, Jake has not made any improvement and has immune system is simply not fighting any simple infections. His SED Rate has doubled in the past 4 weeks and his joints are inflamed and hot head to toes! We are discontinuing Jake's Clinoril because of increased abdominal pain. We will add Celebrex (100mg -2x daily) and Prevacid (30mg-1x daily). Jake currently gets physical therapy, occupational therapy and aquatics each once a week. He has got 5 new splints in the past month ( left foot splint, bilateral wrist splints). We have invested a TENS unit and para-fan wax machine for home use. He continues to do his best to go to school most everyday- but that is about it for the day. Fevers are getting common for Jake in the late afternoon and evenings. We struggle to keep up with homework, studying, therapy, and doing the basics that need to be done. It doesn't help that Jake is getting sick often and then always seems to get a post-sinus infections. Dr. M also discussed that Jake and Hannah are also hypermobile. She emphasized the concern of them both doing too much at school (carrying backpacks, playground- free time, PE class) and then having increased joint pain later in the day. Because Jake and Hannah have excessive joint laxity it can easily lead to wear and tear to the joint surfaces and strains or fatigues the soft tissue surrounding these joints. We are trying to focus on a lifestyle modification, altering our exercise regimen, protecting our joints better and proper body mechanics. Dr. M is working on a letter for LCS to explain their JRA a bit more and some other considerations for Jake and Hannah to be more successful at school. As always......things never stay the same with battling an auto immune disease. So back at the Swamp in 2 weeks for Jake's first Orencia infusion. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgg03LDUSd53POezsIWny9EnQh2bxHol8wd_7vpmyYw5rJaFxCQTyXi2U3-yVhx2MfOjOj3tdTwjKtrOO5JOvO6vY08LGNuKBFp7XEO2_8WBmRVEpxxq_kGDRXfkyB5YgCSJqyHMPggZSqM/s1600/img_1204.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgg03LDUSd53POezsIWny9EnQh2bxHol8wd_7vpmyYw5rJaFxCQTyXi2U3-yVhx2MfOjOj3tdTwjKtrOO5JOvO6vY08LGNuKBFp7XEO2_8WBmRVEpxxq_kGDRXfkyB5YgCSJqyHMPggZSqM/s200/img_1204.jpg" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqUaVfjaLOe3zGuApiQw9ba35THwjgGt27YykhtMwRdvHOhySRUuQGZ9PSbZ-vq95B9mgcO0uMr1PQ4dsyFCCva5RMoKwqSjn4NN7X9R9TJRuR18GYibWLzGpntc9psq_Ws7mO8LoNKr7F/s1600/img_1208.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqUaVfjaLOe3zGuApiQw9ba35THwjgGt27YykhtMwRdvHOhySRUuQGZ9PSbZ-vq95B9mgcO0uMr1PQ4dsyFCCva5RMoKwqSjn4NN7X9R9TJRuR18GYibWLzGpntc9psq_Ws7mO8LoNKr7F/s320/img_1208.jpg" width="320" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgg03LDUSd53POezsIWny9EnQh2bxHol8wd_7vpmyYw5rJaFxCQTyXi2U3-yVhx2MfOjOj3tdTwjKtrOO5JOvO6vY08LGNuKBFp7XEO2_8WBmRVEpxxq_kGDRXfkyB5YgCSJqyHMPggZSqM/s1600/img_1204.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"></a></td></tr>
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</tbody></table>So......I had one child receiving his last Remicade infusion while my other child gets her first Remicade infusion. Staying hopeful and positive that Remicade will be successful for Hannah.<br />
Hannah was a big girl and luckily didn't have any infusion reactions today! She did have big tears as the nurses tried to get her IV's started - but after a few minutes she was fine. A very nice lady in the infusion room came over to talk with Hannah( while I helped Jake get his other IV pre-med's) and got her mind re-directed. She was a bit mad at me for a few minutes, even put her blanket over her head. She simply didn't want her IV and I don't blame her! This is not the way a 6 and 8 year old should spend their days! Within a few minutes of adjusting - she came out from under her blanket and was fine! It helped having our friend (Gavin) and his mom there next to us! Gavin even made us laugh. He says to Hannah, " where is your boyfriend, Hannah". {Gavin was talking about Jake} Love it when kids say the funniest things and we needed a good laugh! Thanks, Gavin!<br />
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Hannah also got the good news of stopping her Enbrel shot, too. Yes-- that is 6 less shots in the Sloan house a week!! Yea-- we are all very happy about that! Not happy that Enbrel failed, but happy to stop Jake & Hannah's Enbrel shots. Dr. M was not pleased with Hannah's swelling and limited range of motion in her hands (wrists, fingers) and noticed a lot of fluid in her right knee and heard clicking in her jaw. Hannah's worse complaints are always her TUMMY, knees, hands, and NECK! Hannah is also in physical therapy, occupational therapy and aquatics each once a week. She wears a splint for her right wrist and has ring splints for her fingers. We are hoping that Remicade does it's job to help Hannah feel better not only in her joints but also her "TUMMY". We are pleased to rule out Crohn's (for now) but am frustrated to not understand exactly what is causing Hannah significant abdominal pain. Hannah's GI doctor just put her on Levsin (125mg) to help with tummy pain. So Hannah will also be returning to the Swamp in 2 weeks for her next Remicade infusion. I was told if Hannah fails Remicade- the next step is Anakinra (Kineret). I do NOT want this for Hannah-- DAILY shots that HURT!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8DlqZ4AnaZlOmBIC8Z5HZzZP36jzTAp5J5ak1RkrCmbG4vqomcY5TPHhJ5CJntcEnbjsFkzdl_O-yr0CfQbqEFnQVWZpaoVOT2EIlwKf1AJfjFruCn14RXhcWw5FWH7ImWB64OHCAqX0R/s1600/img_1225.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8DlqZ4AnaZlOmBIC8Z5HZzZP36jzTAp5J5ak1RkrCmbG4vqomcY5TPHhJ5CJntcEnbjsFkzdl_O-yr0CfQbqEFnQVWZpaoVOT2EIlwKf1AJfjFruCn14RXhcWw5FWH7ImWB64OHCAqX0R/s640/img_1225.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jake & Hannah did it! Now if these medications would just help my children to simply feel better!</td></tr>
</tbody></table><div class="separator" style="clear: both; text-align: center;"></div>We will continue to do our best and do everything we know what to do and pray for good outcomes as Jake and Hannah both start a new treatment in battling their JRA. A special thank you to my parents and those friends who have been a support for Bobby and I. I trust God will touch Jake and Hannah one day and this will be just a chapter in their lives! Anonymoushttp://www.blogger.com/profile/13405391515898480443noreply@blogger.com2tag:blogger.com,1999:blog-7195400996232158116.post-78432333545681645232011-01-13T23:05:00.000-08:002011-01-14T11:11:54.618-08:00The GI Experience no child should have to endure...<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxRYIBArRz7txR2ZzQf_OfP2kaMNkbuZ4dAYWBeY3Nyvgwq_JJiqCGw-1L_vYwmDD78FrKtxOTkOcNNx-W_9LLDui07kexsAIlzSeU1mgunxtShcsyv6TIRbsQxe1vo9PltnozbRnF-NSz/s1600/IMG_9090.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a></div> Hannah's GI issues are not a new issue...been there for a very, very long time. We remember when Hannah was a toddler- she never wanted to keep her panties on, she would cry and cry to have to wear a seat belt across her tummy, she would never wear a pair of shorts or pants/jeans. She was totally potty trained by 19 months old- we now wonder if the discomfort of diapers across her tummy forced her to potty train much earlier than the average baby. To this day- we can't put our arm/hands across her tummy. This is Hannah's sensitive spot on her body. Why? We don't really know why. We do know that her recent abdominal ultrasound showed her liver , spleen and lymph nodes are enlarged. We also understand that having Systemic JRA can cause inflammation to her heart, lungs, lymph nodes, liver and spleen. We have ruled out medications through the past few years. We have tried many tummy medications to help this abdominal pain. Nothing has seemed to help. The only thing we do know is that as Hannah has increased arthritis joint pain/swelling...her tummy complaints worsen. Some days she will throw up and keep going like nothing ever happened. Occasionally Hannah has bright red blood in her stool, and loose stools. We continue to search for answers as the months pass by and the journey of Systemic JRA continues.<br />
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<tr><td class="tr-caption" style="text-align: center;">Abdominal Ultra Sound- November 2010</td></tr>
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We finally made the GI consultation appointment in November 2010. We were directly lead to a phenomenal GI doctor in Tampa affiliated with All Childrens and St. Joseph Hospital. I don't usually like to blog and include physician names- but he is an exception. Dr. Greg Kaiser- an amazing, caring, funny,educational, loving man! After a zillion questions and examination of Hannah- Dr. K shared his thoughts in depth and we discussed a plan to try to find out why Hannah has so much abdominal pain. First, we increased Hannah's Prevacid to 30mg twice daily for 14 days. He did not think this would help, but wanted to to try an easy, non-invasive approach before we move on to the next step. Dr. K was right- no changes in Hannah's abdominal pain during these 2 weeks.<br />
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<tr><td class="tr-caption" style="text-align: center;">Sprite, 7-Up and Sprite Popsicle</td></tr>
</tbody></table>The next step was to schedule a Colonoscopy and EGD for January 7, 2011. ugh...it truly made me sick to think about how I was going to explain to Hannah that she wasn't going back to school with her friends the week after Christmas break, no food for 3 days and we had to prep for this special "tummy test". I remember the conversation so clear and it could not of been better. Hannah wanted to buy her 7th grade friend, Jennifer, a gift when she returned to school. I felt it was time to explain.....so I did! I had rehearsed what I was going to say so many times, but when it was happening....I made up a song about "The cat in the Hat drinks Sprite here & there". Hannah loved my song and I kept adding lines as to where we can drink her sprite and how Sprite can be served. For a girl that loves Sprite..she was thrilled to go on a clear liquid diet and drink as much Sprite as she desires over the week. Hannah excitedly shared her upcoming diet with her brother, Jake and dad and Grandparents. We even took a trip to Publix together and bought $70 worth of Sprite,7-UP, Gatorade, light colored Popsicles, clear hard candy, gum, and clear chicken broth. We were prepared - Dulcolax, Magnesium Citrate, Enema's and all in cart! <br />
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Two days before colonoscopy and EGD- we sent Jake off to school and the clear liquid diet began. I had packed a cooler full of variety sizes of Sprite cans/bottles and 7-UP and we were off for the day. I thought if I kept her out of the house- away from pantry and food options- it would help Hannah! NOT-- Hannah begged to go home and was miserable. <b><i>She was done with Sprite and wanted FOOD!</i></b> I tried to redirect her constantly, thought of everywhere we could go or even buy! This was one of those days- whatever she wanted...she could have!! So we made stops at Target to buy LIV dolls, Justice for new outfits and every store that sold Icee's. We never found an icee that she would settle for, she wanted FOOD! So by 10:30am- we were home sweet home! Hannah fluctuated in her mood- tried to be happy Hannah, but would then cry in my arms as she demanded food. Peanut butter was on the top of her list! Unfortunately, I had several jars of peanut butter in my pantry. Hannah would take a jar and open it, smell it and beg to let her take just one finger lick of peanut butter. Hannah went to bed on night one with a jar of peanut butter in her arms- saying" mommy- please let's give up and let me have peanut butter". She slept in my bed, close to my side....as I listened to Hannah's tummy grumble through out the night.<br />
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One day before colonoscopy and EGD- So I learned that leaving the house didn't work for Hannah. So we spent time outside hand feeding our chickens with peanuts, bubble baths, manicure/pedicure spa from Mom, and lots of imaginary play with her new LIV dolls. Grandma visited Hannah during the day- and brought a bag of Justice goodies for when Hannah has to drink her special juices in preparation for procedure. Hannah was a bit more quiet today and complained less about wanting food. More tears today, but never angry or mad. She simply was hungry and wanted food! The jars of peanut butter were laying in many rooms in the house. She never tasted it, just cracked open the jars and smelled it! Hannah managed to drink nothing but Sprite all day- her second full day of Sprite only. <br />
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<tr><td class="tr-caption" style="text-align: center;">5pm Preparation Begins...</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxRYIBArRz7txR2ZzQf_OfP2kaMNkbuZ4dAYWBeY3Nyvgwq_JJiqCGw-1L_vYwmDD78FrKtxOTkOcNNx-W_9LLDui07kexsAIlzSeU1mgunxtShcsyv6TIRbsQxe1vo9PltnozbRnF-NSz/s1600/IMG_9090.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxRYIBArRz7txR2ZzQf_OfP2kaMNkbuZ4dAYWBeY3Nyvgwq_JJiqCGw-1L_vYwmDD78FrKtxOTkOcNNx-W_9LLDui07kexsAIlzSeU1mgunxtShcsyv6TIRbsQxe1vo9PltnozbRnF-NSz/s320/IMG_9090.jpg" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">What a trooper!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Each sip...worse and worse!</td></tr>
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The clock was moving faster to 5pm. This is the time we were to start the dreaded "cleansing out" preparations. I pulled out my fancy wine glasses, china dishes and cloth napkins for our fine dining experience. Hannah walks into the dinning room and says, "ohhh....Mommy you got your china out for dinner tonight". I said kinda....this is your dinner tonight. 2 Dulcolax tablets, and 10 0z of Magnesium Citrate, which has to be drunk in less than 30 minutes. We set up the timer, and discussed the rules to be able to get Grandma's Justice goodies. We were on schedule.... and the fun began! No need to explain.... NOBODY likes Magnesium Citrate. This is the same kid who wouldn't touch jello, soup broth, clear candy, light colored icee and now she HAS to drink 10oz of this yuky stuff in less than 30 minutes!! She surprised me- we got almost every sip of it in her in about an hour. It did take begging and bribing.....but I'm so proud of Hannah for doing it! Daddy got her two lava lamps to finish up the very last few gulps! <br />
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So I expected results within a half an hour or so. I warned Hannah not to travel to far away from the bathroom. We waited, and waited and NO RESULTS! Hannah was so tired and wanting to go to bed. I wouldn't let her go to sleep- I knew she had to have bowel movements! After awhile, I text a friend who knew from experience what to expect- she recommended calling pharmacy. I tried- no answers and he thought what she took should of worked immediately to 30 minutes. Next, I called her GI on-call Doctor. She advised me that we had to give Hannah a teaspoon of murlax powder with 4oz of Gatorade every hour until 4am. Then do a adult Fleet enema at 5am. She clearly said," If we do not totally clean Hannah out, then procedure will be re-scheduled." I panicked- and sent my husband to Walgreens at 10pm to buy the Murlax Powder. Just then Hannah walks into the kitchen and said "what's wrong, Mommy- can we please go to bed now." I could barely tell Hannah..."No- we can't go to sleep because you haven't went poop yet" and "you have to drink more, and more...all night, sweetie". I was so upset and didn't understand why this did not work- no results??? I tried to tell myself that she hasn't ate anything since Monday at dinner and it was Wednesday night. Maybe nothing there?? In desperation- I tried an adult Fleet enema while Bobby was at Walgreens. Yes- it worked! Hannah had one bowel movement, but I was literally jumping around, so HAPPY!! Hannah layed back down and was fast asleep. I did not have it in me to wake her up and try to make her drink another 4oz EVERY hour through the night! So in a way...I gave up! I never slept a minute and was so upset thtat I did something wrong and put Hannah through this and not able to proceed with colonoscopy and EGD.<br />
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Arrived at St. Joseph's Hospital at 6:45am. Of course, this is the day that it rained cats and dogs! We did our pre-admit paper work and was directed to the pre-op admission area. Many children laying in hospital beds, Iv's and nurses busy completing paper work for each of their patients awaiting for surgery of some type. Hannah was a bit nervous, but was a trooper. She picked out "Tutty-Fruitty" flavor for her mask she was explained she would have to wear. Her only job was to breath.... Next- Hannah is wheeled down to the operating room area. Two different anesthesiologists visit us..... Lots more questions and very inquisitive about Hannah's heat murmur that comes and goes. Everything was explained to us...lots of "maybe, and possibly......" Hated to sign the paper work that the anesthesiologist circled" may cause death". It is rare- but thoughts cross my mind...what if Hannah was that rare case with complications?? Finally, it was 9:30am-- Hannah was wheeled down into the operating room. Her eyes got big as she looked around the room briefly with several doctors and nurses close by. The nurse handed Hannah her IPod and let her watch a movie. It wasn't long after has mask was placed over her nose, eyes rolled back and Hannah was fast asleep. The hardest part......Mom and Dad had to walk away from our baby girl! I looked at Dr. Kaiser and said, "Please take care of my baby". <br />
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So we sit in the waiting room.....tears roll down my face and I question myself, did I make the right choice? Should I have put my 6 year old daughter through this and what for?? Is this really going to answer Hannah's long history of abdominal pain? I watched my watch as each second passed by. Wondering if Dr. K was going to be able to go down far enough to reach the Ileum, was Hannah cleaned out enough to proceed with procedure? About 45 minutes later- Dr. Kaiser walks out and said ,"she is ready". I about flew behind those doors to get to Hannah. She was all curled up in a blanket, holding the stuffed animal she received from nurse and sound asleep on her side! Dr. K didn't have a whole lot to report. He took about 6 biopsy's or so (Esophagus, Antrum, Duodenum, Rectum, Colon, Cecum and Ileum). He was mostly concerned about the Ileum area because this is the area that Crohn's usually first shows signs and most all immunology issues lay here. So nothing alarming was noted on the screen and biopsy's were taken. Results should be available in 5 days. Perfect timing- the day before our Shands visit to Pediatric Rheumatologist.<br />
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<tr><td class="tr-caption" style="text-align: center;">It's done.... Sound asleep! Resting peacefully!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Hannah was so BRAVE to hold back all tears. She woke up to a sore throat and bottom and truly didn't understand why! The nurses told her she would rest while Dr. Kaiser would take special pictures. It's all over.... NEVER want to go through that again!! I hope this is not something that needs to be repeated in the near future.</td></tr>
</tbody></table> The recovery nurse wanted Hannah to sleep at least 30 minutes or so. She warned us that Hannah will most likely wake up miserable, sore, yuky taste in her mouth and tearful! Bed rails pulled down- Mom slide next to her to awaken my princess. She was a bit surprised to see an IV in her hand, heart monitors, and in a different room. She was given Gingerale (generic brand)-- nope....Hannah didn't like the flavor despite she had gel in her moth - down her throat, ect... The nurse reviewed discharge directions and reminded us that Hannah may have blood in her stools and throw up blood and have a low grade fever for a few days. Bed rest and light activity was advised for the next 2 days.<br />
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<tr><td class="tr-caption" style="text-align: center;">Hannah is home...Finally eating her pancake with peanut butter!</td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td></tr>
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We may not know all the answers as of today. But we did get the biopsy results from Dr. K's office. We are happy to share they were normal. Not sure what is next.... Hannah has another GI appointment in 2 weeks. We hope to find out more and be reassured some things were ruled out! Hannah will start Remicade on February 9th, along with her brother, Jake. hard to believe both my babies will be getting infusions together!<br />
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Thank you for your continual prayers, generous hearts, constant text messages and emails. Mom & Dad- Thank you for staying in FL to help with Jake and making sure your girls are good! It was a long week, a week I hope to not ever do it again with Hannah! She was such a trooper and am so proud of her!Anonymoushttp://www.blogger.com/profile/13405391515898480443noreply@blogger.com7tag:blogger.com,1999:blog-7195400996232158116.post-50170606177445954182011-01-13T19:46:00.000-08:002011-01-13T19:46:07.435-08:00So much not understood.......But we do know it's all a autoimmune disorder!<div class="separator" style="clear: both; text-align: center;"></div>I often ask myself, "why is there so much not understood about JRA". All that doctor's and scientists know is that it is a autoimmune disease. And just about everything falls under the "autoimmune disease" umbrella. Even though we know there are no right answers, no right treatments and no cure. It is still frustrating that we just don't have so many answers and so often we hear " because it is a auto immune disease". <br />
<span style="font-size: small;">For family & friends who are following Jake & Hannah. Here's the latest scope with the Sloan Siblings....</span><br />
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Jake and Hannah both had their rheumatologist appointment at Shands on Wednesday, January 12, 2011. Jake IV's (Remicade/Solumedrol/ Zofran/Benedryl) got started very smoothly this morning. He got a higher dosage of Remicade today. We are hoping since this is his fourth infusion of Remicade and giving a higher dosage that this is the month that we will see the difference in Jake.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTniT8i-luD79neq47XM0EeIcav2AHgButaKrxCRaiGokIVg-HBlER7OI5-SNycWPbOKbPOklmsI-6SsUqRVJA9oR98uWr_oFiPpHleGklPhE3QpItkWA07ZOZgrvWVdKQVkghyphenhyphenNBgtX0W/s1600/IMG_1063_0002.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTniT8i-luD79neq47XM0EeIcav2AHgButaKrxCRaiGokIVg-HBlER7OI5-SNycWPbOKbPOklmsI-6SsUqRVJA9oR98uWr_oFiPpHleGklPhE3QpItkWA07ZOZgrvWVdKQVkghyphenhyphenNBgtX0W/s320/IMG_1063_0002.jpg" width="240" /></a><br />
<i>Jake's current medications include:</i><br />
<i>Methotrexate .06ml weekly injection<br />
Leucouorin 7.5mg 1x/weekly<br />
Clinoril 150mg 1/2 tablet 2x/daily <br />
Zofran 4mg every 8 hours/prn<br />
Enbrel 25mg 1-3 shots weekly (depending on how he feels)<br />
Tylenol 3 with codeine 120mg 5ml every 8-12 hours/prn<br />
Melatonin 1.5mg 1x/daily<br />
Cyproheptadine 4mg 1/2 tablet 2x/daily<br />
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Infusions (every 3-4 weeks):</i><br />
<i>Remicade<br />
Solumedrol<br />
Zofran/ Benedryl/Toradol</i><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivS5I-SDHBIzBfvKpJM1szl1HQvUiPkKnCITeBcK8qB_ZNlAN8kDC1TGfY5dQOM70fMj2WcpfowQzMfSo0UpCCCV3kqJnZhsZe7mxc4oO3Qu0y-6wyNgk21XE-eEEoCUtKXPODM5M_1Gx9/s1600/IMG_9079.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><i><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirvhYnGU9_dwMOh7mkruo5iKRKNEimYtLCMsiX_F4clSBUI_t8ZRHwPLuJNXXyr01-_OuAXx1RB6Uma1qhkzdNvw2Woc0kTjV4uvJneXltXqpOOgqaf158oqtWxsvhW0g6TdN9YS6u7yeW/s1600/IMG_1145.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirvhYnGU9_dwMOh7mkruo5iKRKNEimYtLCMsiX_F4clSBUI_t8ZRHwPLuJNXXyr01-_OuAXx1RB6Uma1qhkzdNvw2Woc0kTjV4uvJneXltXqpOOgqaf158oqtWxsvhW0g6TdN9YS6u7yeW/s640/IMG_1145.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hannah shares the infusion chair with Jake. Not sure if Jake enjoyed the company, but Hannah tried to be kind and help her brother in anyway. Next month- Jake & Hannah are both scheduled for Remicade infusions together!! O my....Is mom ready for that?? I'm hoping Hannah will be brave like Jake , and Hannah's smiles will rub off on Jake.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgR44aoHNWFPKnzzRtmg-2fAn8v70qrHf5UjMekBms0ZfCs8JgaFyb45OrJSnkSIfoOO37BwDXcbItxQs3ublyAlA58Si3Sd2xUbNvQil3M1ELxtNWYhXlNXNFp_SoEe7Z1c5J63X0zXYUv/s1600/IMG_1150.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgR44aoHNWFPKnzzRtmg-2fAn8v70qrHf5UjMekBms0ZfCs8JgaFyb45OrJSnkSIfoOO37BwDXcbItxQs3ublyAlA58Si3Sd2xUbNvQil3M1ELxtNWYhXlNXNFp_SoEe7Z1c5J63X0zXYUv/s320/IMG_1150.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jake puts on a fake smile for Mom. Smiles are very few on infusion days!</td></tr>
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During the Christmas break, Jake got the H1N1 flu and was put on Tamiflu for 5 days. Jake recovered fine from the H1N1 flu then simply wasn't feeling well again. He then had a sinus infection/fevers/ increased joint pain and started Augmentin XR for 10 days. So it was hard to tell in December if the Remicade is starting to work with his joint pain/inflammation. Typically, a cold or virus will put kids in a JRA flare up and they struggle to fight a common cold. It's hard to tell what doesn't hurt during these times. <br />
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Dr. E gave Jake a prescription for Tylenol 3 for school. When he is not feeling well- he can take Tylenol 3 to help him get through the school day. Hoping Jake's attitude towards school won't ever change- He LOVES school and doesn't ever want to miss school or have to be checked out for any reason! She also gave him new orders for Physical Therapy/Aquatics and Occupational Therapy. He will need bilateral wrist splints. In wearing these wrist splints we hope to decrease chances of joint deformity for Jake in his wrists. Not sure how Jake will handle wearing these new splints. His first question was, "do I have to wear them to school, because everyone will want to know why I have them on". <br />
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We are still searching for a TMJ doctor who actually treats children with JRA and are able to treat by using the aristospan (steroid) injection into the temporomandibular joint (TMJ) . Had another eye opening experience..... Jake went to a new doctor recommended by his dentist and he encouraged Jake to chew gum and thought it was a muscle issue. Yes- he did hear Jake's jaw pop, grind and shift. I walked out of that office wondering who was crazy? Me or the dentist? Another waste of $100, Jake's time out of school and mental distress!! Dr. E at Shands reassured me that it is arthritis in his jaw causing these problems and not a muscle. So the search is on....again! We may just have to take a trip to Alabama where we know of a doctor who knows what he is treating and does it right!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBvkD2lXmTzgtwuZKBpfuMqy030vbUmTBokhODQS-mdeHK2mK3j-ag_ZJfD2d9HpCDTsEvxgwU0oVYmmxVyoTMWU3YEtliC9BQzfYuZQuRSuvavlD94Ls3AF-9pWQXpCK18kqIaQHnh0rj/s1600/IMG_9091.jpg" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBvkD2lXmTzgtwuZKBpfuMqy030vbUmTBokhODQS-mdeHK2mK3j-ag_ZJfD2d9HpCDTsEvxgwU0oVYmmxVyoTMWU3YEtliC9BQzfYuZQuRSuvavlD94Ls3AF-9pWQXpCK18kqIaQHnh0rj/s200/IMG_9091.jpg" width="133" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Not a fun experience!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivS5I-SDHBIzBfvKpJM1szl1HQvUiPkKnCITeBcK8qB_ZNlAN8kDC1TGfY5dQOM70fMj2WcpfowQzMfSo0UpCCCV3kqJnZhsZe7mxc4oO3Qu0y-6wyNgk21XE-eEEoCUtKXPODM5M_1Gx9/s1600/IMG_9079.jpg" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivS5I-SDHBIzBfvKpJM1szl1HQvUiPkKnCITeBcK8qB_ZNlAN8kDC1TGfY5dQOM70fMj2WcpfowQzMfSo0UpCCCV3kqJnZhsZe7mxc4oO3Qu0y-6wyNgk21XE-eEEoCUtKXPODM5M_1Gx9/s200/IMG_9079.jpg" width="133" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Preparations....</td></tr>
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Hannah..... today was the day we were to hear from her GI doctor about her biopsy results from colonoscopy and EGD she had last Thursday. Still waiting for results & answers- as we sit in the swamp- no results yet! Dr. E wants Hannah on Remicade despite what the biopsy shows (Crohn's or not). So if the biopsy is normal- Hannah will come to the Swamp with her big brother and get her first dose of Remicade on February 9th. If biopsy results are positive- we will stop Enbrel immediately and start Remicade in a few days. Hannah also got Physical and Occupational Therapy orders. Hannah's knees, hands were swollen and especially her fingers on right hand. OT will hopefully determine a good pencil grip to help Hannah and evaluate for other accommodations. Am thankful that Lakeland {LRMC} has a wonderful rehab center with a therapeutic pool. {Actually 2 pools- one for pediatrics only} It's one of our few appointments that we aren't driving out of town for treatment. <br />
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Overall..no surprises or shocking news at the swamp today. I am staying positive that Jake will finally get some relief this month from his Remicade infusion. Hoping to get my happy kid back! The grumps gets very old, very quickly! Poor Hannah and mom gets the worse of Jake's crankiness! Not looking forward to having both my babies lined up in the infusion room getting Remicade! But if this is the best option we have- I'll give it a try and trust God to protect my children from all the other possible risks involved!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLqzQBZkVSPtTPUXtyxBmeQIFudfgM68T8LVIYFKSWtHuMQRNVmWlTEVTMbYM6DyPrfeIJcJrJ3lCdDQ85qttK1OmoSxGmS79yESan3m0becNcZZ6Eo6WBnNvz8b4ZwTYraci-ABFp7hyo/s1600/IMG_1126.jpg" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLqzQBZkVSPtTPUXtyxBmeQIFudfgM68T8LVIYFKSWtHuMQRNVmWlTEVTMbYM6DyPrfeIJcJrJ3lCdDQ85qttK1OmoSxGmS79yESan3m0becNcZZ6Eo6WBnNvz8b4ZwTYraci-ABFp7hyo/s400/IMG_1126.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hannah was amazing- so BRAVE! Not something a 6 year old should ever have to endure!</td></tr>
</tbody></table>Thank you to the family and friends who are such a great support to Bobby and I. I do understand that the bits of information we share with you- may not make sense. No worries- we don't ever understand the entire picture ourselves, and it changes from day to day. Like I said, "there is so much not understood and the only thing we do know is JRA is a auto immune disease and with that- anything can happen."<br />
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<a href="http://www.drugs.com/pro/remicade.html">www.drugs.com/pro/remicade.html</a> <br />
More information about Remicade for those of you who are not familiar with it.Anonymoushttp://www.blogger.com/profile/13405391515898480443noreply@blogger.com2tag:blogger.com,1999:blog-7195400996232158116.post-403384011749945702010-12-28T16:16:00.000-08:002010-12-29T07:27:59.895-08:00From the outside looking in, you can't understand it. And, from the inside looking out, you can't explain it.<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8XVzVGMw4HXqXPulEo9kUtZN57LIozQyspIrjYuAaIhfUtI2BbkskmL_WR5anmK4OTTrrMuTAOxPA1pQGMqFXWwOuLY1j0c5_Im2QbqoYFlmyYgMaRqyJpfOlDgTZGEmjdj8wWvgXP057/s1600/IMG_1063_0002.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8XVzVGMw4HXqXPulEo9kUtZN57LIozQyspIrjYuAaIhfUtI2BbkskmL_WR5anmK4OTTrrMuTAOxPA1pQGMqFXWwOuLY1j0c5_Im2QbqoYFlmyYgMaRqyJpfOlDgTZGEmjdj8wWvgXP057/s320/IMG_1063_0002.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5555918207328877170" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg__f_z84lW0_PmmrMjC8aKMYEofZE0C8M0oFXbE6KuTCUtkRyG4yTC5R-LVibIptYpPlZV-HOYcGGIhyphenhyphen67bdvviK9gDCZAMXah3owOMsQ98ISwP2pBUXAyaU06n6IHfwPsn365n2QUqAQ0/s1600/IMG_1059.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg__f_z84lW0_PmmrMjC8aKMYEofZE0C8M0oFXbE6KuTCUtkRyG4yTC5R-LVibIptYpPlZV-HOYcGGIhyphenhyphen67bdvviK9gDCZAMXah3owOMsQ98ISwP2pBUXAyaU06n6IHfwPsn365n2QUqAQ0/s320/IMG_1059.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5555917760341830098" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUqHXLw4eT7QWx2XdzxyG9J0Nys8VLSguaVhqVgfnxawMQfY6X0lTwc0xZozSO5hHWQ9755hSh4T03uHXSeloVW6ezgrOf-Ixsexj_0MYpB09eiGR80Y6q8rGyTkywmbxErx7BtiftUYWj/s1600/IMG_1037.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUqHXLw4eT7QWx2XdzxyG9J0Nys8VLSguaVhqVgfnxawMQfY6X0lTwc0xZozSO5hHWQ9755hSh4T03uHXSeloVW6ezgrOf-Ixsexj_0MYpB09eiGR80Y6q8rGyTkywmbxErx7BtiftUYWj/s320/IMG_1037.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5555917051707275010" /></a><br /> Our family had the pleasure to join Camp Boggy Creek's holiday party in December. It was here that I read something that I can totally appreciate and it sums everything up. <span style="font-weight:bold;">"From the outside looking in, you can't understand it. And, from the inside looking out, you can't explain it."<span style="font-style:italic;"></span></span> That is how I feel when a friend or family member or school personnel says, "but they look so healthy and are so happy". I find it very hard to explain to someone what JRA is and how it is more than just achy joints! A friend recently asked, "what does Hannah's liver have to do with her arthritis"? I'm getting a bit drained and almost don't have the energy to explain.... <br /><br />Another day in the swamp for Jake on December 14th. Hoping to get another dose of Remicade/Solumedrol to get him feeling good for the holidays. Jake's rheumatologist took the extra time to talk with Jake today. Jake told her on his own that he hurts all over and wants it to go away. Dr. E looks at Jake's joints,hears his jaw and neck popping and listens to mom about his recent chest pains, increased joint pain and CRANKINESS! I didn't have to explain to Dr. E about Jake being miserable-- he was indeed miserable today at Shands. Dr. E even told him to "be nice to his mom, it's not mom's fault and that your mom is trying really hard to help you". So today's game plan was to increase Jake's Remicade and to schedule his next Remicade IV in 3 weeks rather than 4 weeks. Today we also added another pain med (toradol - he got as an infusion). We also got a prescription for Tylenol 3 with codeine (prn)to use on Jake's bad, bad days. . To top it off- we added his Enbrel injections back! I didn't even know you could take Enbrel and Remicade at the same time! Jake was not thrilled to hear he's back to 4 shots a week and continue his Remicade infusions. At this point-- whatever it takes to get him feeling better- I'm willing to try! <br />But O My.....how much more medications can a little guy take? <br /><br />Since our experience with the TMJ Doctor was not a positive one-- we will be exploring another TMJ specialist who can do the steroid injections into the TMJ joint for Jake. Jake's jaws are getting bad again- clicking, popping, shifting and locking! There are some days...Jake warns me, "mom, I'm not going to be eating today because my jaw won't open". It breaks my heart to watch Jake grab his jaw and scream "ouch" as it locks on him with no warning! <br /><br />Jake's recent chest pains are from his costochondritis. The poor kid has no break where his arthritis has affected him! Not as common- but yes Jake has inflammation and severe sharp pain in the costosternal joint. People describe the pain that mimics of a heart attack. He also takes clinoril twice daily which is suppose to help especially with spine inflammation. These are a few of the things people can not see from the outside looking in. So when Jake and Hannah's PE coach didn't want to follow 504 plan-- and Jake comes home talking about significant chest pain and he had to run to play game with friends........ Again, from the inside looking out-- how can I explain it so he understands??? Does he really want to hear that his toes look like sausages? His ribs are so swollen it is causing him severe chest pain? His wrists are so bad that he can't unzip his own pants some days? And he selects which foods he eats because his jaw may be locked during lunch? Or he may have stomach cramps and nausea due to his medications? And he has no appetite and, tired and feels like vomiting because he took his methotrexate (chemo) 2 days ago? Meanwhile- Jake attends school everyday despite how he feels, or how long it takes him to walk without bending over like a old man. He manages to maintain his grades (most all A's) despite how much pain he is in or days he has to miss school because of doctor/medical appointments, infusions. And if anyone asks," How are you Jake? " The answer is fine. My kids have learned already in life- very few people really wants to know how you are feeling, and they most likely don't understand, so why share!! <br /><br /><br />Hannah...... we awaited to hear from her doctor regarding her abdominal ultrasounds that were done in November. We weren't surprised- her liver, spleen and lymph nodes are enlarged. We did the next step and saw a pediatric GI MD. It was way past due- but as a mom-- I was not wanting to put Hannah through the "work up" at such a young age. We tried no fruits/veggies diet with high fiber foods and a very high dosage of Prevacid for a few weeks- no positive results. Hannah continues to complain a lot about her tummy, and has awoken many nights crying with severe abdominal pain. Next week- Hannah will have the pleasure to have a EGD (upper endoscopy with biopsy) and colonoscopy. I'm not looking forward to a two day prep with a 6 year old. How will I ever convince her to drink magnesium citrate and no foods for 2 days prior to procedure? Won't dulcolax and enema's be fun for her.... Do I even attempt to explain procedure to her or just hope the anesthesia does its job? The GI doctor was outstanding, and truly put me at ease. He believes Hannah has crohn's disease, but none the less systemic JRA affects the organs as well. Dr. K explained that if it is just her systemic JRA or if it is crohn's disease-- the treatment is the same. REMICADE -A drug that we are all too familiar with! Hannah's rheumatologist had just talked to us about starting Remicade or maybe Anakinra (depending upon her eye status and GI results). Not sure what to expect from the colonoscopy and EGD. I have accepted that Hannah will have to start Remicade, too. Trying to keep an open and positive mind- praying for the best of what can be possible! We will wait and see what is next for Hannah in her JRA journey! <br /><br />Am so thankful for Camp Boggy Creek and my parents (and their home in TN). These are two places where Jake and Hannah can forget about what they have and be a kid! Camp Boggy Creek is a special place-- Thank you Camp Boggy Creek and donors for building dreams for Jake and Hannah and many others with chronic illnesses. I have a hard time explaining to others what a piece of our life is like on a daily basis- but friends at camp Boggy get it without saying a word! Again, "From the outside looking in, you can't understand it. And, from the inside looking out, you can't explain it".Anonymoushttp://www.blogger.com/profile/13405391515898480443noreply@blogger.com6tag:blogger.com,1999:blog-7195400996232158116.post-75939600295695181962010-12-04T19:32:00.000-08:002010-12-04T20:55:56.039-08:00An overwhelmed Mom..... treatment changes times 2<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_KL4-SH-xvI0QZVGe5eftgk7SE8sfWtEj3JbO4YJeg7F9dTHYlVyplrseI5CtaHvnYXuB2DtLnEpTS4DQ_GiCqqNTynM5jl7k5RiJ6xn6304FDyt5k4K-GmItbOXH9zri92aH-UYxaJjF/s1600/IMG_1013.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_KL4-SH-xvI0QZVGe5eftgk7SE8sfWtEj3JbO4YJeg7F9dTHYlVyplrseI5CtaHvnYXuB2DtLnEpTS4DQ_GiCqqNTynM5jl7k5RiJ6xn6304FDyt5k4K-GmItbOXH9zri92aH-UYxaJjF/s320/IMG_1013.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5547051874492131586" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwN5xoKqwIGY3-gLwF1F1Sg8Eqkbli6IYdXB7v4yLcNUElYaWwYhitvww_BUca5-_Tt-7bwABoWSMJ4dt_VMLk-jSHbFhxuq4puPYb55rFsFK6uxmxQel5_GXtHhtrzM4cminr-gcvYzix/s1600/IMG_1015.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwN5xoKqwIGY3-gLwF1F1Sg8Eqkbli6IYdXB7v4yLcNUElYaWwYhitvww_BUca5-_Tt-7bwABoWSMJ4dt_VMLk-jSHbFhxuq4puPYb55rFsFK6uxmxQel5_GXtHhtrzM4cminr-gcvYzix/s320/IMG_1015.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5547051872356954338" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTPOkHf8OC-mPtVOePDqaQOXcl1lICAB52ARWwDqS4kBkzKlgH-qspYXx8OEQRMBe3q1KioQOyMrUgA9YzjqnNxs1uZz1q2n7EexA9ijNS8vOkHzkh7cEmLhedkHKwaDzWCWdjI2MBoHEp/s1600/IMG_9547.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTPOkHf8OC-mPtVOePDqaQOXcl1lICAB52ARWwDqS4kBkzKlgH-qspYXx8OEQRMBe3q1KioQOyMrUgA9YzjqnNxs1uZz1q2n7EexA9ijNS8vOkHzkh7cEmLhedkHKwaDzWCWdjI2MBoHEp/s320/IMG_9547.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5547051861500257986" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhDMnC0V7mS9IJoGbK4A19hFImGxF6kMO8hxO17Pga5ciy-LyFRSJApubHHmtu2jpUqEUQ0QRzqBt5l5q36vahNBzntMdRke9eBCo3lDOfVXefW3PRPHUkgk3KR3G8n3XHFhyKxVLvKe62/s1600/IMG_1067.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhDMnC0V7mS9IJoGbK4A19hFImGxF6kMO8hxO17Pga5ciy-LyFRSJApubHHmtu2jpUqEUQ0QRzqBt5l5q36vahNBzntMdRke9eBCo3lDOfVXefW3PRPHUkgk3KR3G8n3XHFhyKxVLvKe62/s320/IMG_1067.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5547051851872815378" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgt8PM1yRX1VfRhWbOD2cFzoURmgPP_oxw7dfY4zdblUKOzJ6xD5lbcmcwOF7TBJeR9xGv7mvtBaMKyGkqJ35OEDPYRiocKSvo5r4ZTz3Jmapt_ev2rLtJ_ro3zOvqZP62BxOkA3EdsTxC6/s1600/IMG_6126.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgt8PM1yRX1VfRhWbOD2cFzoURmgPP_oxw7dfY4zdblUKOzJ6xD5lbcmcwOF7TBJeR9xGv7mvtBaMKyGkqJ35OEDPYRiocKSvo5r4ZTz3Jmapt_ev2rLtJ_ro3zOvqZP62BxOkA3EdsTxC6/s320/IMG_6126.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5547051843595412818" /></a><br />Fall is for fun festivities not fallbacks...... Trying to make things easier on me, decided to have Jake and Hannah's Rheumatologist appointments at Shands on the same day. Not sure if that was easier on me or not.....my head is just now stopping to spin! <br /><br />Many of us living each day with a chronically ill child have days or weeks that are overwhelming. This was my week to be on overload! While Jake is hooked up to the Iv pole- getting his solumedrol and zofran- I try to explain Jake & Hannah's past 30 days to Dr. Elder and her nurses. <span style="font-style:italic;">30 days- that shouldn't be difficult. </span>Meanwhile, Jake and Hannah had special surprise visitors. Their family pals from <span style="font-style:italic;">Camp Boggy Creek </span>came to visit Jake and Hannah in the infusion room. Positive distractions are always nice, but today Jake was in no mood for visitors. He was mad to be hooked up to IV's and not down on the floor playing board games with his pal, Roj. <br /><br />So after Dr. Elder gathers info, reviews current labs and examines Jake from head to toe, she shares that his aggressive Enbrel/Methotrexate/Solumedrol/clinoril treatment was not affective. We have reached the point to move on and try another biologic agent- <span style="font-weight:bold;">Remicade</span>. Thoughts are racing through my head....knowing long term health effects are unknown, the increased risk of cancers, and the toll it will take on Jake's immune system. Besides a miracle and healing from God, we don't have any other better options to help Jake to feel better and try to get this disease under control. He has active joint pain/arthritis literally in every joint in his body (even between his ribs, jaws and his toes). On the positive note, Jake was pleased to know that he will have 3 less shots a week (Enbrel) once he starts Remicade infusions. <br /><br />Dr. Elder moves onto kid #2- Hannah. She is impressed with a photo of a recent rash, notices swelling on several joints, swollen lymph nodes, sensitive jaw and tummy. She is mostly concerned about Hannah's eyes and the status of her internal organs. Hannah has always had a history of increased joint pain leads to severe abdominal pain. Hannah has been awakening at night, screaming crying about tummy pain. Dr. Elder discusses the need to consider changing Hannah's medications too. Choices include <span style="font-weight:bold;">Anakinra (kineret) or Remicade</span>. Both of these are more effective treating systemic JRA. So we decided to wait until next eye appointment ( Hannah currently being treated with Alrex steroid drops and is seen every 2 weeks by ophthalmologist) and have abdominal ultrasound. Meanwhile, we increased Hannah's Enbrel to 75mg a week (3 shots a week) and discontinue Mobic and add Celebrex 100-200 mg daily. Discussed doing a MRI of her jaw, but will wait until she shows signs of difficulty eating or weight loss. <br /><br />As Jake finishes his infusions, I sit next to him and think about all the things that need to happen within the next few days. I very quickly became overwhelmed! Jake is moving onto Remicade, I start Rituxan myself tomorrow and Hannah increases Enbrel and starts Celebrex as we wait for more answers on her eyes and abdominal issues. Not sure if it is wise to have Jake and Hannah appointments together on the same day. Another day in the swamp...... a treat to see Grace and Raj, our Boggy Creek friends!Anonymoushttp://www.blogger.com/profile/13405391515898480443noreply@blogger.com3