"A year ago yesterday, I sat in my child’s pediatrician’s office
listening to her say words I have never heard before. Our lives changed
forever, and the word Chiari became an everyday vocabulary word in our house.
Emotions were everywhere, and today they still are, occasionally. But we have
learned to make it into a positive. I don’t let it control my life, nor do we
dwell on it. Instead we spread awareness, that one-day a cure will be found. I
have heavily involved myself in the non-profit American Syringomyelia &
Chiari Alliance Project, to help educate the medical community where I live, to
help the patients that suffer from these conditions, and to believe one day my
grandchildren or great grandchildren will not have to face this journey Kaylie
will travel for the rest of her life.
The year has been a crazy ride, and I am so proud of my
family of how well we have gotten through it all. We also Thank all of our
family & friends who have rode the ride with us, and never left our sides."
I wrote that yesterday on my Facebook page. Tonight I was watching Grey's Anatomy, part of it was about this mom, that fought for her child.... her "mama gut" told her something wasn't right, and they finally found out what was wrong.... But Meredith told her she "fought" for her child. I get all that.... and I love that I do! Because it was exactly how I have felt at times with Kaylie... you feel like your going crazy, about how you talk about symptoms, explain things, or even thinking about the decisions you make about traveling for treatment. But in the long run... you know you made the right decisions, and all that time you were just fighting for your child.
It shouldn't be that hard for parents. They shouldn't have to fight for good treatment, doctors that listen, teachers and schools to understand. But it is what it is.... once over one big hurdle, it seems another is around the corner. I will always fight for my family, that's what love is....
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!!
There is a mom that I met a couple months ago through Kaylie's blog.... she is super sweet, a good listener, and very supportive. Tomorrow her son Liam is having his Posterior Fossa Decompression surgery for his Chiari, tomorrow she needs our support, more than ever. I am asking everyone that has one of Kaylie's Chiari bracelets to wear it tomorrow in honor of Liam. Many prayers go out to him and his family.
I am the owner & writer of this blog. I am also the mother of Kaylie, Mason and Abby. This is a blog of our personal story dealing with Chiari, and related conditions. This is not to substitute for medical advice, please see a physician for that... this is just our story and our experiences.
A Huge "Thanks" goes to TCBOTB for the design of this blog
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