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.
