Saturday, March 20, 2010

Shriner's appt update

Everytime I even think about writing this I get sick at my stomach,  start crying yet again & now I am shaking. I thought if I didn't write  it it would go away. Still this morning the reality is here.

Thursday morning we left to go to Shriners hospital at 5:30. I was  feeling really sick. My nerves I guess. The drive there was very nice.  It was beautiful to watch the sky slowly light up. God was painting  this glorious picture for us to enjoy on the way. They colors were 

We got there an check in was great. Mike took Mary Elizabeth down to x-ray. While we were waiting on them they called us back, triaged  Michala & put us in a room. Mike got Mary Elizabeth triaged after her 
x-ray. He got her back to the room & it was time for him to go for his  conference call for work.

Mary Elizabeth was there for CP clinic. The doctor seeing her was  young. She was good & seemed knowledgable. She said that Mary 
Elizabeth's curve in her back had gotten worse but was still ok  without surgery. She said the good thing was that it was not the type  of scoliosis that would impact her breathing.

Next we waited for genetics. A new geneticist came in which I hate  only because I hate going over all those questions. I should have a  tape recorder. I think that's all suppose to be part of my healing & growing process. I think I was having a hard to mold day.

She was concerned about Mary Elizabeth curve until she saw Michala.  She said oh Michala's is much worse than Mary Elizabeth's. You know  just kinda of that more & more stuff coming in. She left & said Dr.  Saul would be back in. He is the one that discover the unusual gene 
mutation on Michala. I really like him.

Well he came in and said I know that Dr. Shoffner (metabolic  specialist Mo works for) has already told you what an unusually rare  family you have. He said obviously we want to find a link between the 
3 children but it doesn't look promising.

They asked us to enroll Mary Elizabeth & Michala in a study they are  doing. He said it may not help them but the information would help  others. We told him yes. They ended up getting blood from all of us  except Marlee Anne. They were great at getting the blood even though  it took about an hour to get it from Mary Elizabeth. Blood draws are  always stressful for us but it helped that we stayed in the room &  they came to us to get it.

The ride home was beautiful too. Everyone did great. Michala had had  enough about an hour from home & wasn't so happy.

I feel like I should stop here & start a completely different email. You know what I will just for my journaling sake.

Thank you so much for the prayers for our trip to Shriners.

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