~Purple is the Chiari Awarness color~
So, Riley had her swallow study (video x-ray of her swallowing different thicknesses) today, and it came back abnormal. Is that a good thing? Or bad? I dunno. Is it a stepping stone? Who knows.
She seemed to do alright with the thinner items, but has some complications with the thicker. The speech therapist also seems to think she maybe aspirating some food as well. Is it part of the Chiari, I dunno. The ST is going to do some research this weekend to find out if it is from the nerves being compressed or not.
Next step, bed side evaluation. It's about an hour long and I bring in foods that I think give her problems. I am hoping to get that done next week before she goes back to school.
There is one good thing that has come out of all of this. Riley has decided (on our way to Milwaukee yesterday) that she would like to make money to give back to the doctors to "fix" her. So, today we made some bracelets and placed them at a location here in town. We are hoping to raise enough money to give back to her doctor to help find a cure.
Riley is selling her bracelets for $5.00 and 100% will go to Chiari research. Our first goal is $500.00.
If anyone is interested in purchasing one, please email Riley at Ladybug_wi@yahoo.com
I will be attaching a payment button on the side of my blog.
The bracelets are beaded with either WISH or HOPE on them.
Please help find a cure for this nasty disorder.
January 2010
14 years ago
3 comments:
Problems with the gag reflex are a very common side effect of Chiari, particularly in children. Here's an article that explains why ~ http://www.conquerchiari.org/subs%20only/Volume%203/Issue%203(10)/Gag%20Reflex%203(10).asp
Hugs to you and your family from a Chiarian awaiting surgery in March 08 ~ Lace
http://livelovelaugh-lace1013.blogspot.com/
I love that Riley wants to give back even though she's the one that has to go through this journey. Two thumbs up to the parents who have raised such generous and thoughtful children!
Cindy can you take some pics of the bracelets?
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