I kind of feel like I’ve left everyone hanging since we got home in October. To say that life is dramatically different is the understatement of a lifetime. We’ve gotten back to life as normal, but life looks so different then it used to for us.
When we got Jonah’s first 6 weeks report card and all of my friends were posting their kids report cards, I kind of wanted to crawl under a rock. Apparently Jonah had basically stopped halfway through his report card testing for the 6 weeks and refused to do anything else because he was itching so badly. It was bad. This 6 weeks he has fully mastered every skill he was evaluated on. His conduct was great and he was on green every day except one this 6 weeks (and even that was just a yellow) when before his conduct calendar was basically a rainbow. His teacher said he is exhibiting almost no ADHD tendencies where as before he was full of them. He’s still a super energetic 5 year old boy, but he’s normal, so we can relax when we take care of him we even play some games at the olympic kingsway casinos sometimes in this time as well.
His first Saturday back from NJH, he had a baseball game that he got 2 home runs during and made a few outs. He was a drastically different player. He had baseball tryouts last weekend and one of the coaches from another spring team last year looked at him as soon as he started and said that he remembered him from the Spring and he would draft him just because he had so much personality and then after his evaluation, he looked at me and said “Or because of that”. He is excelling at things he enjoys doing. He is reading. He is writing. He is hitting balls and running faster and things that we didn’t even realize were affected by the constant scratching are much easier now.
We have cut our doctors appointments in more then half. He has seen our primary care doctor once for a follow up from NJH, He has seen our ENT twice for an ear/sinus infection (with Jonah we always make sure it’s gone after he finishes meds) and he’s seen our allergist once. He has had one ER trip for flattened fingers in a door and we still see our chiropractor at least every other week (for him), but that’s SUCH an improvement. There were weeks before when we saw all of these men in a week. Those days are gone, I hope forever. We love all of them, but we’re glad to see less of them.
HAIR! Oh man does that kid have some hair now. We went to get it cut tonight and the girl cutting it looked at me and said “WOW! All of this hair must have come from you, Mom.” Jason and I just kind of looked at each other and smiled. There’s a first time for everything and that was the first time Jonah’s ever been accused of having a whole lotta hair.
Our chiropractor noticed last week when he adjusted him that he was locked up in a specific spot so he was probably about to flare up pretty significantly and sure enough he did. It’s amazing what they can tell just from his spine, but they’re always right, so I’ve given up arguing with them and just accepted that they’re smarter then me (we have a group of chiropractors that we see, hence the they). The adjustments calm down the inflammation in his body so much it’s crazy. They have explained to me multiple times exactly how it works, and I really should pay attention to why, but I’m just so glad that it does that I just kind of go with it.
Right now his face is flaring, but his ears are draining fluid, so I at least know where it’s coming from. Jonah doesn’t run fever ever, so his skin is really the best gauge of infection in his body. Luckily all of the men who take care of his medical business know when I call and say that I think he has an infection because his skin is flared and some other really strange really random reason, they know I’m not crazy and that I’m probably right so they go ahead and get him in. Hopefully this one resolves on its own with just the ear drops and an adjustment.
Our normal is still not others normal, but it’s so much closer. At this point Jonah goes between one and two skin care “sessions” a day depending on the severity of his eczema. He takes at least one 30 minute soak a day, sometimes two. Those are rough on school days because it means we start the bath at 5:40 to be out the door in time for school. He is then lathered up in the appropriate moisturizer and cream depending on how his skin looks. Then if he is flared up, we wet wrap the irritated area. It’s a process…but we have a process. Some days it’s just the bath and the moisturizer, but other days its a muuuuch longer process. Those nights when you come home and you’re tired and your kids are tired and you just throw them in bed…yeah that doesn’t happen ever, but the quality of life it gives him is so much better that we will keep on truckin with it for as long as necessary.
Jonah had almost 2 months without using a drop of steroid cream. That hasn’t happened since he was a month old. He hasn’t had a single dose of oral steroids since September and I’ve only had to call Dr. Perry (our allergist) twice-ish after hours. The constant snot drip that he’s had since birth makes it difficult to keep the space between his top lip and his nose clear, but it’s manageable. Winter is still proving to be a little difficult, but the before and after NJH are two different worlds. He has NO open wounds.  I’m hoping to actually start using this to keep up with the Life of Jonah outside of medical stuff since we have a whole lot more non-medical time then we did before :-).