I know many of the readers of Kaylie's blog knows we live in Moore, Oklahoma... Please know that our family and home are ok.

We added an Ophtho doc to the list....

I feel like I am always apologizing for not keeping up.... sorry :/
What's been going on....everything! lol Kaylie is enrolled in summer school, this will help with her reading and math skills. In Sept. we are having some executive functioning testing done. And we saw an ophthalmologist today. It never ends! I don't know why I think it does sometimes, but it doesn't! I should first say that Kaylie has complained on several nights, when going to bed that her heads hurts when she lays down. At first I thought she was being dramatic over that her older sister gets to stay up late, until it has happened while Abby was gone. on really bad nights she will use a heating pad or prop her pillows. I also thought it was due to weather change... all the crazy cold fronts that would come in/ going from 70s to 30s. But what got me really worried was last week while doing her reading homework, she was struggling. I asked her what was going on, she said she sees two of the same words under the sentence. (double vision) She said it only happens when she reads, and i was ok with everything, until this past weekend and she started saying everything was in twos. Ben then checked her eyes for nystagmus... said he saw a little in both eyes. I immediately got a hold of her pedi, and emailed her NS, her pedi got us into a really early appointment with a ophthalmologist today.

The appointment went really well!!! We saw Dr. Trigler at The Children’s Eye Care Center in the city. He was AMAZING! He knew about chiari, and all the weird things that go a long with the possibility of Intracranial Hypertension (IH). Which is refreshing… I didn’t have to get out all my info!

Anyways… we were there till about 10:30… they ran a bunch of tests, and dilated her eyes. He said that he did see a little papilledema (optic nerve swelling), but not even enough to call it mild… almost not enough that he said it could have easily been missed. He said the disk looked good, but the edges seemed a little rough. But the form (I guess the curve of it was good). He also said that her venous pulsations were very good, and present. But because of the papilledema, he sent us over to OU/Dean McGee Eye Institute to get an ultrasound of her eyes. Within about two hours of getting it, he called with the results, and said there wasn’t any fluid in the optic nerve, but there were some drusens (these are like calcium deposits), he didn’t seem to worried about them. He kind of thinks that the double vision is coming from an outer surface issue of the eye.. like dry eyes, and wants us to try putting in artificial tears, to see how that helps. But, if this progresses and gets worse, and other symptoms come on worse… like headaches, nausea/vomiting, and dizziness/clumsiness. Then I need to call him immediately. The next steps would be to check everything again to see if changes have occurred, and then unfortunately a spinal tap, to check the actual pressure in her head. If it ever got to that point, we would head NY. 

So the plan is right now, to gather all the information and send it to Rekate to get his opinions… and I'm thinking we are going to kind of watch it all. Intracranial Pressure is defiantly a road I didn’t want us looking at…. The thought of spinal taps and possible shunts scare the crap out of me. But right now I think things are ok… we will see what her NS says, and go from there!

Kaylie in the kids area of the waiting room at
Children's Eye Care!

Happy Easter

Hope everyone had a wonderful Easter!

This is Kaylie's pet bunny Sara, she has had her for about 4 years. 

1 Year Being Diagnosed...

"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.... 

Everyday...

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!!

Prayers for Liam

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.

Rare Disease Day!

Today is Rare Disease Day, and Chiari is one of the conditions on that list. Please wear purple today in honor of Kaylie and all the other Chiarians. To learn more about rare diseases, please visit www.rarediseases.org or to learn more about Chiari you can also visit www.asap.org.