|What you don't see. Han dropping to floor, crying in neck pain.|
( 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!|
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 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!!
|48+ Hours of Preparation.....|
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!