Wednesday, February 15, 2012

Some of the going ons here

I wanted to do a quick post about why I have been/was so absent from my blog.

#1 my son started Kindergarten in September so we've had to learn what it was like being in 'big kid school'

#2 He had his ADOS/ADI-R test for Autism in August and September. It took till November before we got the results. He was 1 point above the cut off for Aspergers. So at this point he is PDD-NOS, once he's 8yrs old they will give him an IQ test and a Theroy of Mind test to see if it is Asperger's or not. I was told by the person that gave him the test that the only reason he scored above was because, even with his language delays, his speech made him score too high...

#3 His pedi wanted him to start IBI (Intensive Behavioral Intervention). It took a while for us to figure out if we wanted to do that or keep his PSR (he gets or or the other). We decided in November to do the IBI. He had his SIB-R test at the Department of Disabilities in early December. At the end of December we found out he was approved for it (which only the most 'severe' get approved). We just started the IBI processes at the end of January, we had to wait for an opening, and it takes 30-60 days for the center to do evals and write up a plan specific to him and then upto 30 more days for the state to approve his plan. But once thats done he will be getting IBI, after school, at a Montessori school which I'm super excited about.

#4 My daughter had to go to Shriner's Hospital. She has "curly" toes, and I was worried that it was a sign of the neuromuscular disease that I have (which at that time we still didn't know what I had/have). She had surgery in early January to release the tendons under 2 toes (one each foot) to try to help that out. As of right now it looks like she may be the 5% that the surgery failed in :( This means that when she is 5-6yrs old they will go in and pin the toe that is croocked/crossed/curled. They cut the toe and then pin the bone straight and cast it for 6-8weeks.

#5 I have been back and forth trying to get into a Neurologist for my neuromuscular issue to figure out what I have. I finally got county assistance in early January (we are one of the millions without insurance and can't afford $5k+ in Neuro bills). I just had my Neuro appt today. He is "very" he knows what I have. He says I have something called Charcot-Marie-Tooth(CMT) disease. It is a progressive disease, basically the nerves that controll the muscles in the extremities stop working. Right now both my legs are affected. My left way worse then my right, but my right is 'catching' up to be just as bad. I go on March 14th for an EMG nerve conduction test of my legs, to varify that I do in fact have CMT, and he's also sending me for an MRI of my lower back just to be sure that I don't have anything going on there (which he said he highly doubts). I will be in AFO (ankle foot orthotics) leg braces for the rest of my life, and depending on how bad my hands get I could be in braces there. My chances of being wheel chair bound are fairly high in my case. The doctor was surprised at the fact that I'm actually able to walk right now with how bad it is. The sad thing, CMT is hereditary, which means the kids have it (from what I've read CMT doesn't skip generations, its just that some generations have milder forms that go unnoticed or people think they have things like carpal tunnel and such), it also means that poor Kieran's toes are probably a sign of it. :(

So that is the happenings here in our lives, we also just moved this week! Now you can see why I've been so scarce over the last few months. I'm really hoping to get cracking here again!

Sunday, February 5, 2012

Holy Cow Hiatus Batman!

I have been absent from here for over 6months now! I can't believe that. We've had a crazy few months of doctors appts, surgeries, and now preparing to move. I think its time I dive back into my blog. I'll be catching up here soon!