Random Family Updates: September 2013

Soooo the mri turned up nothing, meaning that the episodes that they were worried about being strokes or seizures are not.
It was a relief, but also a burden when the neurologist told us that. But it was also a very good visit with him. He asked about her medical history and I kinda got frustrated. We have been in the hospital 3 times. We have gone over EVERYTHING with each and every doctor and nurse and tech. Do they not share notes????? So I just did a comprehensive rundown of her, and her immediate family. He persisted and I mentioned that I knew there was hirsprungs in my extended family. This is where it gets interesting. We'd already looked into this the first time we were in the hospital so I thought it was out of the picture. He sat on his computer for a few minutes and then said that the genetic testing they had previously done didn't cover it and that there was a genetic mutation of the disease that can present with different issues and apnea, strokes, seizures were among those. He said that basically it is a disorder that occurs in the brain stem and no matter how many tests they run, it wont show up 99 % of the time on scans. Its a blood test that the insurance may not approve, and even if we can prove that it would run in the family, the insurance would just say "assume that it does" and still not approve it.
It is not life threatening. She may still look like she is having seizures or strokes, but it wont affect the brain. This disease/disorder is in the automotive nerves. Its either this or there is an immaturity in her brain stem. But the doctor seemed to lean towards the genetic mutation. He ordered an eeg and he said that as long as it was normal, we should try to get the blood work done. It was. He also made sense of all of her other weird symptoms/quirks.
Poor Ty and Katie. They sat around in different waiting rooms all day. It was so emotional. We all were (and are still) worn out. By the time we were finally leaving, Katie was close to having a meltdown and I was ready to scream. A nurse came up and gave Katie and Kotah stuffed animals to take home at that moment. She sat and calmed Katie down as she talked about the animals. It helped this mommy!
As we continue to try and pin down the diagnosis, we are trying to adapt to our normal. I think I was looking forward to a diagnosis that would have a fix and eventually everything would be ok. There is no treatment for this. Just a way of life. Identifying symptoms and how to handle them when episodes happen.
Even though it's not some horrible thing, it has worn us all down. I guess the best thing about feeling like this is that even the little things pick me up. A video of The Swan Princess for .99$ to watch for movie night tonight. (and probably 3-7 times on Monday), Katie and Kotah laughing at each other for no reason, Katie's funny sayings, Kotah trying to mimic what we say and do, Ty's reaction to her saying "Dada", all the little things to smile at that on better days I sometimes overlook.

I know I should probably post this AFTER the fact, but right now is the only time I have to myself and I need something else to think about instead of my baby crying as I left her in the prep room for the mri.
This past week has been a mess. Pass out episodes, er visit, new doctor, chiropractors, feeding therapist telling me that the previous doctor (the one that called me crazy) called her to try to see if she thought I was making it up and now we are waiting for the brain and neck mri and then later today we see the neurologist.
I'm not sure which I'll cry harder at: them finding nothing wrong, or them finding something wrong. As the week has gone on, Kotah wont sleep unless I hold her, she wont be calm unless I hold her. So needless to say that any cooking or cleaning has been either a miracle, or a scream fest.
Since I haven't posted any pictures, here are some:

first day home:

daddy and his girls

blessing dress. I made a different one first, but when I went to iron it, I forgot that I had put clorox on it to get rid of a stain and hadn't washed it yet...... it left a brown mark, so this is take two. turned out cute!