Friday, February 4, 2011

A Few More Questions...

I've had a few more questions asked the last few days, so I figured I would just answer them on here for all to see.  Feel free to send any others my way.  :)

Is Abby's trach permanent? 

No, not right now.  We don't know if it will end up being permanent down the road, but right now it is in long-term temporary.  We expect Abby to still have a trach when she enters school.  How long she has it really depends on how much her jaw and airway grow.  I got my best look at her airway the other night when she was wailing in the ER, and it is very small...about half an inch in diameter if I had to guess.  So it's got an awful lot of growing to do before she can depend on it for breathing.

Abby doesn't have any of the deformities that you see in pictures of babies with this syndrome (or Pierre Robin Sequence, which is her secondary diagnosis).  She looks like a perfect little baby!  Are these traits more likely to come as she grows older or bigger?

I'm really not sure.  There haven't been enough cases of Cerebrocostomandibular Syndrome to even know what is a typical "look" for those babies.  Pretty much all of the cases include a secondary diagnosis, which often contributes to the facial abnormalities.  Abby's Pierre Robin Sequence makes her jaw extremely small, but the trach pushing the skin forward gives the allusion of a chin.  I guess that a positive outcome of the trach!

Honestly, we don't really care how she looks.  We love our girl and our only concern for her regarding appearance is that others will judge her based on what they see.  It's our job to help them to look past that and get to know that beautiful girl with the soul-searching eyes!

1 comment:

Patricia Ensing said...

Good evening Julie, or should I say good morning. I love the way you answer questions, and the honest truth I have always said about Jessica is her limitations in life are going to be what other people put on her. We went out to dinner tonight for the first time in a long time. Jessica was wearing a purple trach tie with her purple speaking valve, and I can not tell you how many adults just stared at her. She asked me why people were looking at her that way. She is use to children doing so, but to have adults do it was very intimidating to her. Heres hoping Abby is doing better. I loved your pics of family dinner, and yes to go out the door with them is a real challenge. I can promise you it does get easier with time. Just to go to the store can be a real challenge. Hope things are going better for you. Take one day at a time and enjoy every minute with your precious child, as they are very special to us.