Damn you CHIARI!

(Sorry, Gram!)

I just want to start off by thanking everyone who has contacted me about getting hats for Karly. I have had a great amount of people interested, so Karly should have a nice warm head this winter! Thank you!

Do you ever feel like God is trying to take you down? Well, I am starting to feel that way. I think he maybe upset that I haven't been going to mass as much as I would like, but it's tough with 4 kids. I know, it's not a great excuse, but I know the couple who ends up sitting next to me thanks me if I don't bring them all in!

Something happened yesterday with Riley that set off my "mommy meter". For as long as Riley has been feeding herself, she has been taking FOREVER to eat. I mean, if you would let her sit for an hour, she would. But yesterday we were in a bit of a rush to get her ready for her bus.
She was eating yogurt with a baby spoon (which she chooses to eat with instead of an adult one) and she was taking tiny bites. I was getting frustrated and asked if I could help her. She agreed, well, not so much, but she allowed it. I covered half of the spoon with yogurt, put it in her mouth and......... SHE GAGGED, and spit it back out at me. That's when my sensors went off. Something wasn't right.
When her bus finally arrived, I talked to her bus aide, who is also a classroom helper, and asked her to watch Riley as she ate her meals.

Meanwhile, after all the kids were gone, I started pluggin' in to the computer. I emailed a neurosurgeon, and my wonderful friend, Kaci, and placed a call to our pediatrician. Our pediatrician told me to just make an appointment with our NS and keep her posted. Kaci - my dear friend through all this chiari and cranio crap, has been my lifesaver. I love her because she has been there, for one, and she tells me 100% straight forward - even if she knows it's going to freak the living daylights out of me!

So, after a little research, and emailing, I found that Riley has been having symptoms for sometime now.

* Not potty trained at night - and is getting worse - soaking her bed.

* Temperature sensitive - she's always hot and stripping clothes off.

* Has troubles eating thick texture foods.

* HATES loud nosies

* Has trouble with head pressure when flying

* Eating very slow - any distraction - might as well wrap it up.

* Balance issues - fell yesterday and could not get up. Teachers had to help her

............NEWS BREAK..............

Our neurologist's nurse just called, and our neurologist has recommend that we see a neurosurgeon as soon as possible. She has passed the word on to the NS department, and is trying to get Riley in.


* Complains of dry lips

* Has low muscle tone on rt. side of body.

I guess there was more there than what I thought . I guess I didn't really need to wait until the poor child has gagged on her food to mention all of this to the neurologist.

I feel bad. I feel like I have been putting Riley "on hold" while I figure everything out with Carson and Cooper. It just stinks!!!

Anyways, when Riley was dropped off yesterday, Kari, her bus aide mentioned to me the she only nibbles her food at school, and has been doing it for sometime now - and that she fell.

Can I just tell you, I am so overwhelmed with everything right now! I'm trying not to freak, but I know what will happen when things get bad enough - and it's scary.

I don't know how many of you caught the extreme home makeover episode, but that was WAY extreme, but even a little part of that is scary.

So, for now - I will try to keep my eyes open, do a lot of journaling, and hope for the best.


nailgirl said...

Aww hang in ther cindy. I know just how you feel. I have put off taking Dyllan to the dentist because of Cameron's problems.

Lost A Sock said...

Hang in there. Big hugs.

Michelle said...

One thing at a time, right?!?

Maybe you'll bring her for a consult & come visit us in MKE.

Holy crap, ya know?

my4kids said...

Hang in there. I hope everything is okay but if something is up we will be thinking of you and Riley.