Saturday, April 28, 2012

Random Thoughts...

I am sitting at school right now waiting for my next class to begin. I'm so glad this semester is almost over, because I can barely concentrate on anything but Kay. Ben and I are so overwhelmed with gratitude for all the support we have been receiving. I sat down last night to write out a few "Thank You" cards to recent donations that have been made to Kaylie's account. There was one anonymous donation that I am not able to send a "Thank You" to, so I wanted to take the time on here to tell who ever you may be... Thank You... your kind gesture is much appreciated. And this drawing is for you from Kaylie.

I also have to say "Thank You" to all the people that have been passing on Kaylie's information and/or website... we have had so many hits, and from all around the world! Of course mainly in the US, but also from South Africa, Japan, Germany, Russia, Denmark, United Kingdom, and Hong Kong. It makes us so happy, that the awareness of Chiari is being spread. And just maybe someone will read Kaylie's story, and it will help another child or adult out there that is suffering from similar symptoms, or illness.
I am trying to take a step back from some of the support groups online. It saddens me that there are so many parents that are very confused about whats going on with their child. I have noticed this more on the pediatric sites, more so than the adult ones. I am very fortunate that I am able to grasp how the medical field talks about all this, and know where and what they are talking about. Sometimes I wonder if its a downside to know these parts of the brain, or how certain lobes and nerves work. But maybe this is the reason of why I decided to go back to school awhile back, is to prepare me for this journey my family is taking. I keep telling myself that I could promise my career in nursing to neuro, if I could just have the guarantee that everything will be OK for her. But honestly, I think by the time I finish school.... I don't think I could deal with that specialty.
Kaylie has been on her Topamax for almost 4 days now. It is still too soon to see how it is working. It takes a couple weeks to get in her system. But, she has had a symptom that has been happening more frequently lately. She has been having more night time accidents, urine only. Easter morning, we did wake up to where she had lost her bowels over night. That has been the only time that has happened to us, even during all of our potty training days. But the urine accidents have always happened here and there, but they seem to be getting more frequent. This can happen with Chiari kids, or it can also be caused by a tethered spinal cord (which we won't find out if she has that till the next MRI). OR - which I'm hoping for could be that the Topamax is sedating her so much she isn't waking to get up to go. Unfortunately, the Topamax can cause a lot of same symptoms as Chiari. Still not going to add it to our list of symptoms yet, things need to be ruled out first.
Oh! I have had one or two people tell me they have joined the email list for this blog, to know when I have updated it, and that they aren't receiving emails for when I do. If you have put your email in the "Follow her by email box" (that is located on the right side column of this blog.. near the top), when you finish going through the steps, you will then be sent an email to verify, that you signed up for it. Its just an email that has a link in it to click on. I know for Ben his ended up in his spam folder... so you may have to check there....OR just sign up again, so the email will be sent again... then go check what folder it was sent to. All email updates are sent between 9-10pm, once a day.
Well, I better get to my class... keep spreading her site, because if we can at least make a difference for one person that may read this site... this blog has done it's job!!! Thanks for all the support!  (((HUGS)))

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