Tuesday, January 29, 2013

Chiari in Schools & IEP/504s

Lately I feel like I can't keep up with anything! I have a lists of posts that I keep adding to that I want to talk about.... but wanted to start with this one first. 

For the Jan. ASAP meeting I hosted, our discussion topic was on Chiari in Schools, and IEPs vs. 504s. I had a guest speaker, Kaylie's school special education teacher. She was great!! And gave a lot of insight on everything. I wanted to share the handouts that I gave out to the group, and my meeting notes.

I think I biggest thing to stress, is that each patient is different with Chiari, so because of that... each child that has a 504 or IEP is going to be different as well, to meet that child's needs. 
Please click on the handouts below to access them. 

Also, here is a list of Books about Chiari/Syringo.

And some other helpful links dealing with 504/IEPs:

Sunday, January 13, 2013

6 Months Post Op!!!

A little behind, but Kaylie hit 6 months post op this past Friday!!! I can't believe its been 6 months... the time has flown by! 
I have decided to not post any more incision pics until her 1 year post op... there is just not a lot of change. But I will always continue to talk about how she is doing! There are defiantly more good days than there are bad, like there use to be... but we do have bad days, that I have no clue what to do. Mainly not knowing how to handle her emotions. I didn't even announce on Facebook this past Friday that she was 6 moths post op... and I always do, on my page. But I didn't because it was a bad day at our house.  She woke up with a headache, I knew it was going to happen, because she always gets headaches now about a day or two before the weather in our area changes. Saturday we went from low 60's to that evening being low 30's... a dramatic drop! It's almost as if she can feel it coming in! Anyways, she woke up, very upset... and no matter what I did to try to fix something... it wasn't good enough. Luckily, by the time she came home that day, she was better... and she even told me, "you were right mom, I had a good day." What a relief, because that whole day I sat on pins and needles, wondering if she is OK, or still upset.. or what. I probably told Ben 10 times that day, "I hope she is ok, I hate these days...." 
Isn't she beautiful!!! This pic reminds me, I probably should update her top blog photos... she doesn't look like my little baby anymore!! She is growing up ... way too fast!!

A lot is going on this week, two people I know are having surgery this week for Chiari. One lady is someone I met recently... she is a fellow Oklahoman. Her surgery is Tuesday. The other is my friend Jennifer's daughter, Sarah. Sarah is having surgery on Thursday. Sarah's case is a little different. This is her second surgery. She just had surgery, I believe back in the beginning of July out in California. They are from a nearby state of California. Her first surgery was horribly done wrong, and she has now gone and seen Dr. Rekate, because Sarah is doing so bad. He will be correcting her first surgery, also doing a fusion for Basilar Invagination too. So, this week if you could say some prayers for these two Chiari warriors, that would be great! 

I have an ASAP meeting coming up soon, Jan. 26th, at 11am. It will be held at the Southwest Oklahoma City Public Library: 2201 SW 134th in OKC. This meeting will have a discussion topic about Chiari in schools and 504s vs. IEPs. I have a guest speaker coming from Moore Public Schools to come speak about 504s/IEPs. 

Then on Feb. 23rd, at 11am. Also at the Southwest Oklahoma City Public Library. This meeting will have a discussion topic on Medical Disability/Medical Bills/ Financial Asst. , also with a guest speaker from the Oklahoma Disability Law Center. This is a great group for all patients with illnesses, that need to apply for SSI. To find out more info on them, please visit: www.okdlc.org

And Last but not least... VERY exciting news!!!  Chiari will be talked about on The Jeff Probst Show!!! The show airs Jan. 16th, this Wednesday. In Oklahoma it comes on at 3pm, to find out when it airs your time, please visit the shows site at www.jeffprobst.com 
Anyways.... it's about how a lottery ticket hoax that went viral on Facebook, has now turned into something amazing for the Chiari community.... Awareness is the key to everything!!! To read more about the hoax, please visit The Savannah Morning News article: here.