John's nurses were all very sweet when we left. He'd fell asleep in the wagon, and they were all disappointed that they couldn't tell him bye! They were very kind and wished us the best with John's journey and finding out what is wrong with his knees.
When we left Riley it felt like we had orders for enough prescriptions to start our own pharmacy! John is on an antibiotic for two weeks, a strong anti-inflammatory, a stomach protectant, a high dose of tylenol, and he also has an extremely strong pain prescription for when he has another flare up in his knees. Getting all of John's meds filled here at home proved to be quite the struggle due to their high grade and potency, but we finally got everything filled for him! His doctor also gave us another prescription for physical therapy. I have a physical therapist that we will use; I am in the process of scheduling his first appointment. The goal with the therapy will be to have exercises that will help get John through the flare ups, and we'll also be working on getting his gait back to normal when he walks and runs. He's stiff and sore, so this could be a challenge; but the therapist we'll be going to is the same that worked with Jake's foot after he was born, so I'm confident she'll do a great job.
Now, back to those genetic blood tests the doctors sent out ... If they come back with positive results, then that will mean John has a severe genetic problem ... but we'll deal with that if we have to turn that corner. If the genetic tests all come back clear, then the doctors fall back on Juvenile Rheumatoid Arthritis again. JRA is very difficult to diagnose because there is no specific test that can determine "yes, you have JRA." The only way to diagnose JRA is to eliminate everything else under the sun and hope you can find a combination of extremely potent medicines that help ease the symptoms. If in fact the doctors do fall back on JRA, then John will fall under a special category of JRA called "systemic JRA." It's a much more rare form of JRA, and we'll go into more details on it if we find out that's what he has.
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Now that we are home, we're facing a completely new set of challenges. John is having nightmares of being poked with needles (which isn't surprising considering he was poked over 20 times while he was in the hospital for that week, and they woke him almost every night with a needle at least once). He wakes up screaming, "Stop it! Stop it! It hurts! Owie! Owie!!!" It's absolutely heartbreaking to hear him cry like that and see him curled in a ball with his arms over his head. He is also afraid to sleep in his bed. I think it reminds him of the crib in the hospital because they both have bars/slats on the sides. I'm considering upgrading him to a full-size bed, but we'd have to get him a new mattress and the bed rails for his bed, so we shall see. The good news is that his fits to fight sleep are getting **slightly** shorter, so I guess that's a start.
Since we're back I probably won't be posting on here as often because I am very busy with working full time, tending the boys, coordinating appointments, and still running my crafty business (www.arielscustomdesigns.com for those of you who haven't seen it yet). I will keep everyone updated as much as I can, though!
We hope everyone had a Merry Christmas and a fabulous New Year! May this year be brighter than last, and may your hopes and dreams come true!
