More Tests...

Hi all, :-) Just to let you all know Ty had more tests yesterday. The docs are very confuzzzzed & don't really know what to look for next. He needs to have muscle & tissue biopsies during his surgery, so that'll save 1 lot of anesthetic!! They don't think its progressive "still" which is great. They have a feeling a syndrome will be named at some time. Besides that, we keep working on him getting stronger, & although a diagnosis will be nice, as maybe there is medication to help him.

So hes going for his ABR "auditory brain response" test Friday, so again, no eating & drinking, which is like saying blah blah. How do you tell him Mummy isnt being mean, I promise! Then ready for the next surgery for his "bits & pieces" LOL I'll keep everyone posted xx

The Story So Far... part 4

LOTS OF NEWS!!

Ok so we got the results for Tylers sonogram; as we thought they are a good few inches from where they should be :-( However they have good vascular activity; can be relocated if they dont move by themselves. That might be a while yet, but in a few months they'll look again to see.We also got the results for all of his blood tests.

CLEAR of chromosomal dissorders, no fish deletion, his metabolic test was great.

We had the MRI last Thursday, it was a very good experience, although upsetting to see him go off with the docs.... It was done very fast, 1 hour and he was in recovery. Home by lunch time!

We heard back from the doctors today that the MRI showed normal activity YEEEEYYYYYY!!!!

Although I will get more info when I see my neighbor who is a neuro surgeon on Sat.

In the mean time the MRI showed Tyler has a sinus infection, which over the last few days had really started to show. We just thought it was a rotten cold, but we caught it before he got really sick.So this all means his issues must be totally muscular (as far as we can figure) We thought that anyways, but its nice to hear it from the docs. He is holding things with this hands now, & even trys to reach a little now too.

The Story So Far... part 3

Had the sonogram, not looking good to avoid an op......Looks like he'll need to have something to put things where they should be! Not happy, but will find out tomorow what the doc thinks about the report.

The Story So Far... part 1

We have finally started testing to see what might be going on in Tylers little body :-)We had decided after the first 3 failed attempts at drawing blood at 6 weeks, that was enough! So we decided to wait for him to get a little bigger so the blood draws would be easier. Well Monday we tried again.....We managed to get 1 test completed that will tell us some basics plus a full metabolic work up. After many attempts; blown veins we decided to wait AGAIN! So we're going back in on Friday for the rest