Boys And Their Toys

So I was trying to find a cause and effect game for Isaac that we could hook up to his big screen TV. I finally found this vsmile baby toy. It's great! Even better, I found it at Wally World. There are a few games to chose from where he can see the colors and shapes change on the big screen when he presses any button. Isaac's sister was excited to see that her little brother is playing video games now just like the rest of the family....LOL.
Today we went to the neurologist and there were no changes made to his medications. He has a very mild seizure disorder. In fact he only had some when he was a little infant. Still the neurologist doesn't want to rock the boat, so he has kept him on the same amount of Keppra since he was 7 months old. I was interested in learning more about the stiff fingers/joints and whether it was neuro related. The doc said a big word that I had never heard of before called Arthrogryposis. What a mouthful! I guess I have some researching to do.

Last weekend it was 100 degrees, but we managed to stay cool by spending a day on the lake swimming and cruising around on my Dad's boat. We had a nice time and got some much needed rest and relaxation.

Well, have a great rest of the week everyone!

-Colleen

Speed Racer

Weeeeeeeeeee!

Isaac's physical therapist let us borrow this little cart on wheels this week. I'm not exactly sure what they call it, but we call it his race car or his throne on wheels.

When big sister gets a hold of it she takes him on a wild ride!

Isaac is in another awareness video for Chromosome Disorder Outreach. Who knew that having a rare chromosome disorder would make him famous! Click here to watch it. Also click here to watch all 4 videos. He's in Video #3 too!

Have a great weekend and Father's Day everybody!

-Colleen

The Big Screen

Yep.... this is the good life!
So Isaac got a super huge TV for his room this week!! He's loving it and likes to watch it while he's getting his nebulizer treatments. The night nurses are liking it too!

We have to be selective about the videos as he can get overstimulated easily, but he LOVES Baby Einstein...it's a more calming video for him and educational. This one he is watching is about sign language.

Monday's ENT appointment was a bit disappointing as I felt as if I was talking to a totally different doctor than the one I spoke to in February. The big scope of Isaac's airway is on July the 13th, but he most likely will just come out with a larger sized trach. I asked her about the possibility of us trying to cap him periodically to see how well he can breath around it. How else would we know unless we try it, right? She put a finger over his trach for a half a minute and said that he wasn't breathing well enough around it to even try capping. So here we are......on the road to.......no-where! Oh well!

She was talking about getting hearing aides--another thing to think about. We often find it hard to believe that he has moderate hearing loss because he's so sensitive to noises. I will be talking to the doc further about this as well as his speech therapist. This is a hard decision and one more thing I really don't want to add to the plate right now.

-Colleen