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It’s been a long time, so I’ll try to get everyone caught up on Jonathan. He is officially 17 now. He is 5’2″ (definitely taller than me) and he now weighs 87 lbs. In the past year, he has started a new seizure med that is doing wonders for him. He is doing so well in fact that we are taking him off of his original seizure med. He will still be taking two seizure meds, but that’s better than three 🙂
Since we pulled him out of the school system at age 12 he has been much healthier. It just became very clear to us that the progress that he was making at school was not worth the risk to his health.
We saw the Orthopedic doctor this past year and Jonathan’s curvature of the spine is about the same (it cannot be corrected) and he has osteopenia (to be expected because of all his issues). He still using a wheelchair (he got a new one last year) to get around a lot of place, but now he can (with assistance) walk into his pew in the church auditorium from the van without the chair. However, he sometimes tries to leave church before the service is over so not sure this is good or bad 🙂
Jonathan started a new seizure medicine recently. It is working wonderfully. He has not had one seizure since he started this new medication. In fact, it seems to have controlled his seizure activity so much that his personality is showing. And boy does he have opinions 🙂
We have been able to start stepping him down off of one of his other seizure medications already and we are very excited about that.
Jonathan’s appetite has also improved greatly since he started the new med and he has probably gained about 3-4 pounds just in the last couple of months since being on this new med.
Jonathan now weighs approx. 74 pounds and is 5’1″ (making him taller than me).
We are looking forward to how Jonathan progresses through the rest of the year.
Well, Jonathan is now 15. I can’t believe that he is so old. He is now pretty much as tall as I am, and he now weighs about 72 pounds, give or take. I guess it depends on the day 🙂
He has been doing well the last month or so. We had a long rough summer/fall. He had Mono twice, strep throat 3 or 4 times, the flu and strep throat together (that was fun), but he seems to be well now. Of course, I always qualify that with a, as far as I know, cause I really never know when something is lurking 🙂
All in all, I’m very grateful to the Lord for what He is doing for our family. He has taken care of Jonathan through so very much and has met all of our needs. It is a blessing to see how the Lord takes care of Jonathan each and every day and to see how the Lord has allowed Jonathan to grow, to change, and to mature. There are still so many things that Jonathan cannot do, but so many things that he CAN do that we never thought possible.
So with everything that has been going on, I just realized that I haven’t updated on Jonathan in quite a while. With that in mind, here is a quick rundown on Jonathan lately.
He weighs about 61 pounds, which is great. Â He now comes up to about my chin, also great. Â Along with all of this growing and weight gain comes changes.
Jonathan got new leg braces last week.  They are made of a much sturdier plastic that previous ones.  Also, they are a very manly looking grey and black herringbone type pattern.  They look quite nice on him 🙂  He is also having to go to Scottish Rite tomorrow to get his wheelchair grown (adjusted for growth).
Meds have changed some too due to weight gain. Â His Topamax (seizure med) has been upped to keep up with his weight. Â There is still room to up it again and still be within acceptable levels for his size. Â Thankfully this last dosage change seems to have helped a lot. Â It has been about two weeks or a little over since his last seizure. Â He did have one today though.
He has also started taking Synthroid (thyroid hormone). Â Apparently he has maxed out what his pituitary gland can do on its own and so we will be supplementing that for the rest of his life. Â So far, the hydrocortisone (Cortisol, stress hormone) is still fine, so we don’t need to up his dose on that. Â We have had to up his dose of DDAVP once. Â Thankfully that really seems to be helping to keep his sodium levels in the correct parameters.
All in all, he is doing very, very well since we pulled him out of school at the end of last school year.
Well, Jonathan had a well checkup this week and he is doing great.  He has been having problems all summer with his allergies and has had to take three rounds of antibiotics for sinus infections.  However, this week, all was well.  In fact, he has picked up some weight in the last couple of months.  He weighed 52 pounds.  That’s the first time that he has gotten over 50 pounds and we are very happy.  Granted, this makes  it much harder for me to pick him up, but I’m just soo excited that he’s finally gaining some weight.
The Endocrinologist did have to up his dose of DDAVP (the med that helps him concentrate his urine properly). Â I’m guessing that his added weight had something to do with this. Â I guess I shouldn’t be surprised though as he has been eating like a little pig for several months now.
At the end of last school year we had withdrawn him from the school system, so come the beginning of school this year, he will just stay home with Heather and I.  Since Heather will be in 8th grade, I guess that’s what Jonathan will have to listen too 🙂  I sure hope he likes Algebra and Civics.
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