My JRA Heros

My JRA Heros
My JRA Heros- Jake & Hannah

Wednesday, February 22, 2012

Sloan Siblings ...... My Heroes!

What you don't see. Han dropping to floor, crying in neck pain.

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.
( ok so I can't seem to let  it roll as easily as I had hoped.  I will though.....)

 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.   Halleluiah....IEP is done! 

  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.

Another infusion day!
Nothing a kid likes!
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. Another......Halleluiah

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!

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'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!!

48+ Hours of Preparation.....
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, he was amazing, 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!!  Halleluiah............  But frustrating because this does not give us answers to these GI issues Jake is having, been having for several months!

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.

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!