Wednesday, 25 March 2009

hellooooo rolly rolly potato chips!!

Tyler had his ABR last week. As expected he had to go under aneasthetic. He was down in theatre mainly because he was out, so it was just like a surgery visit....However it went very well, we found out his brain stem is responding to sound as it should, but his right ear doesnt allow sound through. We hope thats just a simple blockage, so its likely to be cleared up soon. The main thing is he hears, he must just not feel the need to mimic or try to make many sounds yet! He will, when he's good & ready. After all we all make so much noise he probably thinks there isnt time to get a word in edgeways!!

So waving at everyone HELLO, HELLO, HELLO! All of a sudden Tyler has decided to do lots of GREAT new things!!! With a lot of hand games the last few weeks he now loves to wave at people, cats dogs anyone really, & when he gets a wave back he just loves it! The cats keep refusing, but hey cant win em all!!!

Also we have a new game Rolly rolly. It used to be that we'd put him down & he'd stay put. Well with the exception of spinning on his bum! but now when we lay him of a flat surface he rolls over for fun. He just looks at us & giggles, then fires up his muscles for another rolly rolly! So proud of him!

Then tonight, sharing a bag of chips with Daddy. His hand started reaching into the bag (which was as big as Tyler) He managed to get a chip. To actually want to reach in is something, but to get a chip! Yay Tyler :-) xxx

Tuesday, 17 March 2009


I have to post some footage of Tylers fave thing to do....SPINNING as fast as possible LOL. He has one of those hanging bouncers & although he bounces occasionally, he mostly spins. Its so funny, he giggles & just gets as dizzy as possible, then plants his feet to STOP then he spins the other way I think to ease the dizziness....

He gets so much excercise & he's really good!! I need to work out how to add video on here, any ideas Sal??

Friday, 13 March 2009

Todays Tests

We are very happy to announce that Tyler is in recovery & did really well!

After Tyler’s ABR today his doctors told us that his brain is responding to sound just as it should :-) YAY!!!

They can’t tell what he does with the sound and information when he gets it, but his brain is getting it :-) He has severe loss in his right ear, but the ENT should be able to help figure that out for him, maybe a blocked tube, and maybe something that can clear up on its own..... But when they bypassed that he heard well.

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


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 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.

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