What a day!!

Update for the day:

Once we arrived, I got hooked up with all of the EEG leads...


Within a few minutes of that, our dear friend Dr. S (friend from college, now a big time doctor here) stopped by...


Then, the doc that is on the unit this week came in...

Went down to the MEG. Praise the Lord, I had a seizure within a few minutes of getting in the MEG. However, they don't know if they caught that one. Then, I had another one while they were in the room with me adjusting some stuff. So, they didn't get that one. Then, we waited another three hours and nothing. So, I will possibly go back tomorrow or Friday to try for more.

I got back to the room and took the brownies and cookies to the nurses that I made for them. On the way to them, we passed the neurosurgeon. So, Mom got to meet him. Then, the doc that is seeing me this week walked up...so, they all got to sit and talk about the proper way to treat me.

Once I was back in the room, I had a seizure and the doc on call was able to get in here and witness it. He was then able to do the exam he wanted to do during the seizure and stayed for about an hour afterward to ask questions. A lot of the concerns we've had from the beginning (that we've been told to not be concerned about) were concerns of his. He is going to order an Endocrinology consult tomorrow to look at how my thyroid or Diabetes Insipidus could play in to this. He agrees that it doesn't make sense for a 27 year old woman to start having seizures out of no where. He said he feels we need to really think outside of the box and try to uncover some answers. He also believes these are originating in the Insula. I had never heard of it until today. However, it makes a lot of sense with the research we've done. Our sweet friend, Dr. S, did some research tonight while on the phone with us, to confirm a lot of what he said. So, maybe we are finally moving in the right direction. I sure hope so.

Today has been a long day, as we had to leave the hotel by 7am, I've had nine seizures so far, we've packed and unpacked quite a few times, and didn't really get much food today due to the timing of all the tests. So, we are ready for bed.

When we wake up in the morning, they are going to move me to the pediatric unit. They feel that they gave me the Radioactive Isotope too late last time (you have to get it within so many seconds of the start of the seizure). The hospital rule is that it has to be kept in this lead lined locker of sorts. At Medical City, they kept it in my room and so it was quick to get the injection. However, the "lead locker" is pretty far from my room here. It is in the pedi section. So, they will move me over there tomorrow morning and then we will start praying for another seizure once the isotope is ready.

Now, off to bed and I'll share more updates tomorrow.