Today the last piece of the puzzle fell in place.
As I eluded to in my previous post about Josh... I have some news today.
It was a big appointment day down at Primary Children's. And despite the fact that Josh had therapy this morning, only got a 45 min nap and had surgery two weeks ago..... he was an angel like always. He never once cried or whined. He got agitated when his weight, height, blood pressure ect. was taken but that was it. I love this boy so much!
Anyway, our first appointment was with Dysphasia (Feeding Clinic). Josh was 26.3 pounds today. That puts him in the 5th % for weight. He lost a pound since his surgery so it was explainable and they didn't dwell on it (phew!). His height is 35.5 inches tall so he is in the 23% for that. His head was 46.3cm (0%) but all things considering, that was good. We didn't do any med changes, just some dosing changes. Nothing big there. They are pleased with his progress...but he could still stand some more calories a day. His BMI is 2% so they want to see that up a bit. But nothing huge. We talked about his continuous feeds, and his doctor told me to plan on at least 6 months more of 24/7 feeds. We can re-evaluate at that point. There isn't any way he would grow out of the reflux in that amount of time. So for now we just continue on how we are doing and increase his calories as he can tolerate it. So the summary of that appointment was..... he is doing good, needs a bit more calories, but all in all we are in a great place with him from a medical standpoint.
Now for his neurology. As some of you may or may not know... Josh has had these shaking/twitching/jerking episodes going on for the past 16 months. He has had numerous EEG's and testing to find out what is going on. Nothing so far has shown up. But he has also not been doing the 'episodes' during any of them. So really there was still a big unknown going on. Then we have this sleep study done last november. After that was done, the Sleep Dr. decided to change his sleeping meds to something called Neurontin. Since about sept. I have kept a chart of Josh's 'episode days' for the Neurologist. Well after starting this new medicine I started to notice that he wasn't having his bad days anymore. I thought it was just fluke at first, but they really stopped. Two weeks, three weeks, a month went by... christmas... and he still had not had any more of those episodes. We already had an appt with his Neurologist for today (since oct) so I was very curious to see what he would say. I had done some research and actually read the info that comes with the meds (you know when you pick them up from a pharmacy and it gives you the list of side effects, ect?) and found out that Neurontin is an anti-seizure med. That is what it is really for. So I thought...mmmm..... interesting. So anyway today after going over this with his neurologist, it all fell in place. He was diagnosed with a Seizure Disorder, but unknown cause. Really it means since they have not caught them on EEG's, they don't know what kind he has so it is unknown. Since the meds have stopped them, the dr. doesn't feel it necessary to do further testing. And I have to agree.... since he told me that would mean a few days in the hospital being monitored. No thanks!!!!! (It's RSV season again). So he told me he finally feels like the last piece of the puzzle has fell into place. We finally have all his diagnosis and can move on to maintaining things for him. This is HUGE!!!! For soooo long we have had this 'unknown neurological problem' going on with no name and no way to decide on treatment. It took a process of elimination to finally get here. And I feel like a huge weight is off my shoulders. I can truly move on now and look to the future.
All in all I have to say that Josh is in a good place right now. He is healed from surgery, he hasn't played with his ears in 4 days now, he has been fun, active and doing some good things. I don't care if it takes 12 meds a day to keep his body moving and working. I don't care that I will be lugging around this feeding pump for at least another 6 months (prob a year realistically though). I don't care that he has so many diagnosis you could write a book. I just care that he is happy, healthy and making progress. He may not ever be like other kids, but I believe he has such a special place on this Earth and will change other people lives for good. He is an amazing example of never giving up, keeping a positive attitude and being happy for who he is. And he is only 2 1/2!!!! He has taught me more than I ever could have imagined and I know he will continue to do so. I think one of the greatest little quotes I have read is something I heard from my good friend Jessica (thanks Jess...itwas on your FB page) .....
Some Super Hero's don't wear capes.
I think i want to make a thing for Josh's room that says that. What do you think?
1 week ago