Monday, March 18, 2013


I have been so busy lately, and I know I say that often... but I think i keep myself purposely busy like this. I think I do it, so it doesn't give me time to ponder thoughts about other things that lead to worries. I have been helping ASAP with finding sponsorships and product donations for the annual conference this year. Its July 24-27th, in Los Angeles, Ca. I have also been busy helping my future sister in law with her wedding.

My last post was on a little boy Liam.... I have talked to his mom twice since surgery. He has been some now for about 5 to 6 days, and is doing great. Everything went well with surgery as well. I know exactly how his mom is feeling right now.... so relieved to be past the surgery part, but now I am sure she is in that home worry stage.... you just want to make sure they don't fall, or hit there head.... its a different feeling when your at home those first couple weeks. You no longer have the nurses to depend on. But I know things will be fine!

I can say Kaylie is officially healed from her tonsillectomy... last week she still had small scabs in the back of her throat, but they are now gone.

A couple weeks ago Duke University sent us some more questions to fill out, it had to do with the condition Ehlers-Danlos Syndrome (EDS). And that they are going to add this to their study.
Kind of of comes at a weird time, because I have talked to our pedi about this recently, and had planned on looking more into it. And Mason went to the ER this past Friday, for his elbow slipping out of place, from falling on our wood floors. They just popped it back into place, and he was fine! But we think this is the second time this has happened, and that the first time, it either went back into place on its own, or he popped it back in by moving his arm a certain way. Anyways... something I plan on looking into.
My ASAP Chapter also is planning on having a meeting on EDS for our April meeting. There seems to be a lot of chiari patients that deal with EDS.

On another note.... I had a parent/teacher conference with Kaylie's teacher this past Thur. It went well. But Kaylie is having troubles in a few areas... reading and math. There has been some memory issues too. I actually have an appointment with our pedi in April to talk to her more about this, and to possibly look into some executive functioning testing. I just keep reminding myself that Kaylie only had brain surgery about 8 months ago, that is does take a full year to recover, and that she has missed lots of school from both surgeries and other illnesses. I was actually thinking about it the other day, and realized that there hasn't been one month yet where she has been in school for the complete month. So far we are on a good start for March!!! She is on Spring Break right now, though.
I recently was sent The Chiari Book, by Dr.John Oro.... its a light read, and very good!! All though I knew most of the information, it was a good refresher, and I did learn a few new things. You can get the book on Amazon.... Dr. Oro is a neurosurgeon in CO.
Other than that.... just staying busy!!

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