Wednesday, January 7, 2009

January 7

Girl, if only every one was as good at keeping New Year's resolutions as you are!

Your vision teacher brought you a new toy to help stimulate you. It is a box with toys that dangle all around you. You were under it while we were deciding which toys to use and where to put them, and before we were even finished you figured out how to bat at them. Good job working on the "play with toys" goal.

I have always put you to sleep in the same position--on your side with a pillow behind your head to keep it aligned in case you vomit. Yet, for the past few days I have come in your room to find you somewhere completely different. (Daddy guessed "On the changing table?!?"...not that different.) This is where you were after nap time yesterday. (Special thanks to Daddy for drawing where your head should have been.)
And when I put you on your tummy, you scootch around in circles. You don't actually move anywhere, but you manage to rotate so that your head wind up where your feet were, and then back around.

I am excited about this newfound "mobility". We have removed everything from your crib so that you can't wedge your face up against anything soft. But my fear is that you will tangle your G-Tube up around your neck while sleeping. You must be fed overnight--there is just no getting around that. Without night feeds you wouldn't get nearly enough calories. I am just not sure how to keep you safe from the cord.

Months ago, our neighbor Hilary sent me the link to a Yahoo! group online for parents of SLO kids. These parents (and their children) have been one of the greatest sources of help and encouragement. They are truely the experts and have given us so much advice from their own successes and failures. When something new happens with you, they are usually the first people to whom I turn, since they can tell me if it is typical for your syndrome or not. I am so grateful to them, and when I post my concern about your G-Tube to them on the forum, I have little doubt they will have an excellent solution for me.

1 comment:

Hollie said...

GO AUDREY!!!!! that is excellent! You gave me inspiration to get on top of my resolutions!

We are on a few yahoo groups for various things, they are wonderful! Ask any question... No question is stupid! Someone will have an answer!