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 6

Its been a while, so I thought I'd update :-)We've been to have more tests, but nothing came from them. Doctors have still not got much of an idea as yet.... We have lots more lurvly :-( equipment to help him get stronger, sooo glad we have the room!He was feeling poorly a few days ago, but thankfully that passed and only a little weight lost. Its like he is in a little time capsule, almost like he isn't growing.....?He can sit, hold a cookie, shuffle in circles on his butt, he is a smart kid too. So he'll get stronger when he's good & ready I'spose :-)Tests more visits coming up over the next few weeks, so I'll update at some point.

The Story So Far... part 5

OK, so its been a while since I updated the page. I didnt have much to tell as we are still in the dark, BUT we finally have some new news!!So he is 10 months and can now sit on his own!!!! YEY. He does still have to be caught, but the fact that he can hold his body up is a great sign. He can play with toys, hold them and choose to pick things up.

Although he's a bit wobbly with his arms, he gets it in the end :-)In addition to the Hypotonia, we now have another named condition to help find the source of things. Its called Marcus Gun Jaw Wink :-) a mouthful, but it explains why he pulls his crazy faces we love so much! :-)Going to visit the neurologist again this week, so I hope to maybe find out if we are closer to seeing the bigger picture

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 2

We went to the Arnold Palmer hospital Friday ; had "the blood test" The tech was so much better; Tyler didnt even cry, they got what they needed with a smile :-) So, in a week or 2 we might have an answer. If he has a chromosome dissorder, we will have a name for whats wrong.....; maybe we wont, which is what we're hoping for of course.