My JRA Heros

My JRA Heros
My JRA Heros- Jake & Hannah

Thursday, March 31, 2011

The Sloan Siblings and family visit capitol Hill to share our JRA Journey.

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 Sloan Family is raising our hands & voices against arthritis.  It was amazing to be surrounded by 312 people representing 47 states , including 80 children who all believed the same thing!                       Arthritis is unacceptable!  

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.

The "Sloan Siblings" ready to share their story!
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.

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:
1) Join the Congressional arthritis caucus
2) Make arthritis a national priority and send President Obama a letter
3) Continue to fund  arthritis research through the NIH
4) Put arthritis on the list of diseases researched through the Congressional directed medical research program.

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". 
The Sloan Family with Rep. Dennis Ross.

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.   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!

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!

President Jake Sloan
Future First lady..Maybe??

Friday, March 11, 2011

Rotavirus 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.  This is nothing unusual-- her tummy is often a area that is very painful and after increased activity it seems to hurt even more.  

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?

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. 

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.

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 totally contributed this to his new medications.  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 NEVER 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!

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.  And what always comes with a common illness..... A JRA fare-up!   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. 

Hannah's favorite visitor- her brother, Jake!

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!

Hannah was happy to be headed home!