We are home again for a bit

Hello all. We are home again. We got released Friday evening after they monitored her from anth. She had an mrv of the brain and it showed nothing. which i knew. Then the doc said that he was done and that we needed vascular. As easy as that sounds umm nope. They are few and far between. It sucks. We are going to have to travel to houston, boston, phili, or sacramento to see a doc. I dont understand why any of this can't be simple and easy.I am pissed bc they knew that she needed vascular and well they kept doing their crap anyways. What a waste of time for ms k and i. I am sorry but i hate for my baby to go through this crap.
One positive thing that came out of it is that ms k seen neurology on thursday. She has mild hypotonia (weak muscles) and a bit developmentally behind. Well the attending who i work for said alisha i was thinking about ms k and i want to test her for Riley-Day syndrome. She explained it and said it could be a huge possibility that she could have it. Okay great. So Friday they sent out the bw. It takes two to three weeks for it to come back. ugh. I was doing good by not looking it up until i got to work and one of the girls said she had looked it up and was not impressed. Lord please keep the comments to yourself! So i could not help myself and i looked it up. Now i know she might not have it. But if you look it up yourself you will see ms k has quite a few of the stuff going on. Then it says that she has about a 50% of making it to 30! Holy shit.. I am 25 and that is still young to me. I want to be a grandma. I mean we have an arranged marriage already. ;) (oh Jane!) So this really did not help me at all. Sometimes i wish people would keep their remarks to themselves.
Please pray for ms K though. I think she is sick. She has a dry cough, stuffy nose, and just flat irritable. That is not normally her. I have also got a cold or something. So ms K needs those stay away germs prayers. We need her healthy till we get to our vascular doc.
Her pedi is going to call me today and we are going to have a small chat. I am supposed to take her in for her weekly check tomorrow since she is going to out on spring break.
Here is a pic of ms k getting her EEG (brain wave test) (just click on pic to see the pic)