Tuesday, December 18, 2007

The List

Despite the fact that I said no lists this year, I was presented with Eric's list last night. Anyone know where I can find a "spider costume that lets me climb walls"? And, what about a "toy house that is a copy of our house"? Where does he come up with this stuff! No doubt, he'll be disappointed come Christmas morning.

This week isn't turning out to be as low key at work as I had hoped, so it looks like I'll be part of the insanity at the malls this weekend. Deep breaths ....

Speaking of Jack's inability to talk, I received Jack's "Augmentative and Alternative Communication Evaluation" in the mail today. This report is what we hope convinces the insurance company that it needs to approve and pay for the eye gaze system. We should get the pre-authorization (or denial) fairly quickly. I'm really not too worried that it will be denied based on prior experiences with insurance paying for aug-com equipment.

The report states, in part, that "Jack's greatest communication strengths are his ability to indicate his understanding of what is spoken to him by facial expressions and eye gaze. The most significant weaknesses are his inability to use speech to express his needs, interests and wants due to severe dysarthria and his inability to independently communicate using his Augmentative Communication Device."

I now have a word to describe Jack's inability to speak -- "Dysarthria" -- which is "a motor speech disorder caused by paralysis, weakness, or inability to coordinate the muscles of the mouth."

This supports what I've believed all along, that it's not that Jack doesn't have anything to say, it's just that he can't get his mouth to say it. His muscle weakness is so severe that it even affects the muscles of his mouth and face. Well, at least he can still smile :-)

Today we had our every two month meeting at the house with the representatives from the vent dependent program, the nursing agency and the Department of Developmental Disabilities. Of course, everyone was blown away by Jack's room. You just have to picture Jack laying in his bamboo hut bed with its leopard spotted sheets and he has this big ol' grin on his face -- thinking he's the king of the jungle! One of the women who was at our meeting today made the comment that Jack is the "happiest sick kid she knows." Isn't that the truth!

Well, it's late and I need to catch a few hours of sleep before I face another day of demands. Have a great day my friends and stay warm.



julie w said...

I hope you get a quick answer and Jack can start telling you his thoughts, that will be awesome.
I think I'll be joining you shopping this weekend - I am a long way from ready too.


Anonymous said...

I'm glad the process to get the deive is in the works. Maybe you will have a positive answer early in the new year! Hugs to Jack!
Kristy and Nathan

Anonymous said...

Oops. I cannot type when I am sleep deprived! The typo word should be "device!"
Sleepy Kristy

Cindy said...

If you find the spider costume, pick one up for me too! But only if I can climb walls in it. HAHAHA!

I did all my shopping online this year, with the exception of stocking stuffers. It was great, just sit back and wait for the UPS truck.

Melisande said...


Merry Christmas to you, Jack and family!!

Anonymous said...

I just caught up on your last few blogs and saw Jack's room. That is amazing.

I hope you get approval very soon so Jack can let you in on all his secrets.