Today Kaylie saw the ENT. He is wonderful! He is the same doctor that did her ear tubes, and adenoid removal when she was two. We talked about how she has been sick 4 times in the past six months... he said 3 times in six months is too much. He recommends her tonsils to be removed. So, Feb. 11th she will have a tonsillectomy. I told him all about her Chiari, and he was very interested in learning more about it, even asked questions about her symptoms before surgery. I gave him the ASAP handouts & brochure, and also a new post card I had made for our Chapter here in Oklahoma. Its just a card that on one side says what Chiari & Syringomyelia is, with a diagram, then on the other side states that the Oklahoma Chapter meets every last Saturday of each month as a support group. It also as place & time, along with my contact info... and ASAP's website.
Worried...YES. I know its a minor surgery... I just worry, I can't help it. I also worry about having to tell her about it. I don't want her to think its anything like her last surgery. Ben & I have decided that we probably wont tell her anything till two days before or night before. If we tell her any sooner, I think she will worry herself sick.
But, hopefully this will all be a positive outcome.... I know she needs this done, she is sick too often. So, hopefully this will take care of all that.
Working on a lot of new project ideas, one of them is getting all the kids together in our Chiari group, for a fun activity, sometime in the spring. I have also been working on packets to go out to the medical community about chiari & syringomyelia (I should talk more about that condition one day... I guess I haven't because Kaylie doesn't have it, but it is very related with chiari, the two practically go hand and hand.)
I have also come in contact with a few new moms, from this blog... when I read their emails, and stories.... it brings me back to those beginning days, and how much we have overcome. I'm glad I can be there to support them, the moms of children with these conditions really form a bond. All though we don't meet... we worry about each child. I think some of the moms in the Internet & Facebook groups forget that, that we are all here to support each other. Sometimes too much information is a bad thing... I try really hard to let moms I talk to ask me the questions... and for me not to overwhelm them with so much information.
Anyways, just thought I would give a brief update, about our ENT appointment.... days I don't look forward to!
Friday, February 1, 2013
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