Here Is Half Of An Update!
So since my last post everything is pretty much the same. We went and saw neurology a month ago as we haven’t seen her in almost a year. I have to admit that she really has come a long way from way back in the day. I think it has been very difficult though as she has been A’s neuro since day one. So for years she blamed all of his issues on being a “preemie” and it wasn’t until we have seen her the last two times that she truly feels that he is missing another “diagnosis.”
Today we talked about A and how tight he is with his legs. We are going to get him fitted for “gators” that he will wear when he sleeps to help stretch his legs out. He used to have a very low tone over his entire body however over the last year or two things have changed and he is spastic most of the time in his lower half. A perfect example is how he sits HORRIBLY in his wheelchair and it is very odd to see him “relaxed” even while sitting. Arching is definitely his thing!
I mentioned that we are in the works of getting him a stander which she thought was great. She did tell me that he should spend at least 90 minutes a day in the stander to give him the effects that we need to give him.
Disappointed yet again.
It never fails that we truly seem to get the shitty end of things for A. Neuro wanted to know why he doesn’t have these things already? Had PT not talked to us about using gators? Hmmmm yet again I have no idea. I had asked his PT in the past about getting some sort of braces for his legs and I was told “he doesn’t need them.” So what am I supposed to do with that? These people are supposed to know what they are talking about right? HA! I should have known from our history that this isn’t the case.
Stander. Well *I* asked to first try one a LOONNNG time ago. I think A was about 15 months old the first time we tried one. We don’t have one yet because they are SO slow and keep messing around. We don’t have one because nothing ever seems to work for A the way that it should. And these standers are NOT cheap. The one that we just got the quote on is almost $5000!!! It is absolutely crazy and makes me sick to think that we as special needs families are totally taken advantage of!
Heck, A is almost 5 and we have YET to get a seating system for in the house. We have YET to get his wheelchair the way that it should be.
We will be going to her spasticity clinic in July. She will have her therapists there to look at A and we will go from there.
However on a good note we also met A’s new PT a few weeks ago. It was a blessing actually because his most recent PT was as useless to us as it gets. She however has left the company hence our new PT. She actually seemed to know what she is talking about. We really miss our old PT who moved away!!!
Next a dreaded word for me.
This has been the biggest stress in my life lately. Now don’t get me wrong, I really want A to go to school HOWEVER I am really really concerned, worried, scared…just about any word you can imagine.
J and I had a meeting about a couple of months ago with A’s homeschool. It was the first of a few that we will be having. So my biggest thing the last few years is that I don’t want A to have a nurse at school. However now with the trach we do not have a choice. Fine. But I told them that the ONLY way that he is going to school is if he has a nurse AND an EA. Period. No ifs and or buts. They said they could probably work that out.
Even still I am nervous. We were told that any time that A is to have an “episode” they have to call 911. I am sorry, but I don’t want to be called into the school everyday or the hospital for that matter because of his episodes. Now I did tell them that I do have an EA that I would like to work with him in school but they just say over and over that I can’t choose his EA. I realize this, but would you not be more comfortable with someone that KNOWS A and how to handle him then to have someone learn? Yes they would. I won’t be giving up my fight. I think they got the idea at the end of the meeting just how much I fight for this little man!
On Tuesday we had the much dreaded/feared appointment to get the results for his muscle and skin biopsies. All was NEGATIVE!!!!!!!! Actually the doctor said that A’s mitochondria is the best he has ever seen on a biopsy. Go figure eh?
He did however send me up for bloodwork as well as he is concerned about my repeated miscarriages. He thinks there is a possibility that I could have what is called Anti APL Syndrome. Long story short, lets just hope I DON’T have this. I am not sure when the results will be in.
Wednesday night we spent the night in hospital for a sleep study. His last one was in 2008 when it was done at Sick Kids. This should be very interesting to see the results to compare them to pre-trach.
There has been a lot more going on but I will get into that on my next post. I think this one is long enough already!