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Catherine Update

Catherine's speech therapist made Catherine a book with pictures of her family members in it. Hopefully seeing these pictures of familiar people will encourage more vocalization. She likes looking at it.

I can't seem to find my favorite picture...

Where is it?

Not this one...


I found it!!!

I was able to skype with Dr. Wilken a couple of weeks ago about weaning Catherine and he gave us things to think about for home vs. center based weans. He also talked about acceptable weight loss during the wean. I was so appreciative of him taking the time to offer this type of support to parents. He even encouraged me to contact him again via email if I had any other questions. Only one of Catherine's other doctors ever gave me his email and encouraged me to use it, and she's seen a lot of dcotors. What does it tell you that I have to have a skype conversation to Germany to talk to a doctor experienced with hunger based weans? There is a huge gap in acceptable care for kids who are tube fed.

Catherine caught a cold 2 weeks ago and her interest in food when down quite a bit. I am glad I have the boys around to remind me of what normal behavior is. Because while it's easy to get discouraged when she doesn't want to taste or eat anything, I can look around and see that when the boys get a cold, they don't eat very much either! I also told Jim to remind me when Catherine starts eating by mouth, to notice how picky the boys are and how little they eat sometimes. It's easy to obsess over what she eats! I also need to keep in mind that all the eating (or not) that she's doing right now is while she is on full tube feeds. So she's not really hungry at all.

But then, yesterday she made up for what she hadn't done while sick. First, she ate a goldfish cracker at lunch and most of it went down. Then she started licking and chewing on some Potato Straws. She had 3 and most of them she actually swallowed. Please pardon the sound track ;-)

I've never seen her maintain this much interest in food! Then at supper she had 5-6 more! This is great!

She keeps reaffirming that she is ready to wean. I have been in contact with a therapist at Seattle Children's Hospital about a possible opening in April. If that falls through, Jim and I will most likely try again at home during his Easter break.

Here is a video of Catherine saying peek-a-boo. She says it pretty low, so you might have to turn up your volume!

And one more of her showing off her vocal skills. She uses this word a lot around her brothers.

Thank you for your continued prayers!


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