Seriously?...Part 2

The strange week continues.  My Wasband and I had a conference call with Dr. Shimamura in Seattle last night.  We were going over the genetic studies that we have to send our blood for and signing the consent forms with her.  There is alot of paperwork to do and still to be done.  We also made sure the scheduling was being co ordinated for the kids bone marrow biopsies in June. 

She began going over the schedule for the week that we will be in Seattle but there were changes from what we had originally talked about and planned on.  Originally, we were to meet with the Biochemical Geneticists who diagnose and treat Mitochondrial disease.  My kids were diagnosed with a mitochondrial mutation this past February so meeting with these docs face to face was a time for us to get some education and see if there is any treatment we can do to prevent any future problems.

Ironically and out of the clear blue, we are no longer seeing the mito docs.  The moment she said those words, I felt so discouraged but what followed caught me really off guard.  She had a meeting with the Biochemical Geneticist and they feel that we need to meet with Neurology instead because the mutations of the mitochondria my kids have are in the nerves.  Hmmm...Neurology?

I told her of the events that unfolded this week with Spencer's continued problems and meeting my sister's friend and that her son's diagnosis was made by Neurologists because it is a nerve/muscle problem.  She too was stunned at how things have fallen into place.  We are both a little perplexed. 

In addition to our Oncology visits, we will see Neurology, Immunology and Endocrinology.  I might add that these visits are not because we need things to do in Seattle but because the kids are having so many issues that have yet to be resolved. 

On a side note, Shelbie has been so cranky today!  I know she's been depressed this weekend but she just seems to be sinking deeper and deeper into a sadness.  She wouldn't tell me what was bothering her until finally after doing what I do best...poking and prodding she confessed that she has petechaie.  Ahhhh, what now?  I thought about taking her in for a CBC but we decided to just keep an eye on it.  Her hands are still swollen so maybe the leaky vessel problem caused from the chemo is causing more problems than we think...Poor girl. 

I know we have to go through this, I just really hope that all this turmoil and worry brings answers in June. I can deal with anything but the unknown. 


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