Monday, November 14, 2016

Status Quo

I lucked out this weekend.  I was suppose to make a quick trip back to Utah to drop a girl off at the airport. It was actually something Shelbie had committed to several weeks ago but since she can't drive... It's a long story...Anyways, I was prepared to do that but to my surprise, Spencer said he wanted to take the girl.  I was so relieved because I have hit the proverbial wall.  I felt guilty because I knew he wasn't feeling very well and I could see that he was as tired as I was.

On got an unexpected call from our Gastroenterologist on Sunday afternoon.  I was surprised to hear from a doctor on a Sunday but grateful for her call.  She wanted to visit with me about some issues that she didn't want to discuss with the kids around.  I so glad that she was sensitive to whole situation.  I really like this doctor!  She also told me that she had been doing some studying on Dyskeratosis Congenita and wanted to reassure me that we were covering all of our basis.  There is a high rate of cancer of the gut in DC people so we need to make sure we are managing symptoms and watching for changes.

I was relieved when she said that she really enjoyed our family and was looking forward to working with us and being a part of the team.  She was happy that I was a researching mom.   That helped to hear that after being kicked out of that appointment last week.  I don't think I am an obnoxious mom and I rarely get angry so I have been wracking my brain trying to figure out how I made that other doctor so angry. Oh well, moving on.

Today has been a weird day.  Just some random energy that didn't feel very good.  I felt it in all of us tonight.  Not entirely sure what's up.

This week, Shelbie starts her new dosing of plasma.  Since she has so many complicated things going on, they want to keep the rate of infusion slow.  By slow, I mean over 7 hours!  It's strange to me how this feels like forever.  It's only 7 hours.  I hope we start seeing some benefit to the increased dose.  Shelbie's been so tired and her mouth is full of ulcers because her white count has been so low.

The boys have a handful of tests to do this week but no planned trips out of town!  I need to start getting Sam's follow up plan for his brain abnormality underway so, no rest for the wicked.


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