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
amazing.
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.
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
amazing.
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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