And the prognosis deepens and worsens

A few things have happened today:

*Dr. Shoffner will not be able to meet with us until September. And the follow up will have to be approved through insurance, otherwise it is $300 out-of-pocket. Ugh.
*We are going to have a hard time getting insurance to approve her medication, which fate would have it, is quite expensive. The reason being is since mitochondrial diseases are still new in the medical realm, all treatments may be considered experimental, thus unapproved.

Now the more devastating news, if there is such a case. Stacy spoke with Megan's physical therapist today and she has had mitochondrial patients in the past, 4 to be exact. Two or three of them have passed away. Phrases like "Enjoy her while you can.." and "Love her the way she is..","Enjoy her smiles and her walking, for now..." One thing that she said that hit closest to home was that I could literally post in here or tell you on her care page that she is doing awesome and no signs of illness, and literally she could be gone the next day. That is how this disease works. Things come completely out of no where and that's was the scariest thing I have heard in a few days. No news we are getting is good news, which is taking it's toll. Everyone says to be positive, and we are trying. But, when every bit of news is bad and worse and awful, it's hard to get a grip on the positive. Everyone we have talked to, so far, has given us morbid news. We are going to have to get anti-bacterial stations put in the house for constant hand cleansing. First rule for us and for everyone we know, Megan can not get sick. If someone comes over, the MUST wash their hands, period. With Jimmie starting Kindergarten, and the germs there and Ian-Thomas starting Pre-K in 2008, the germs are everywhere.Oh, and this winter....God in heaven, I dread this winter. My heart is hurting as I type this blog, on the edge of an emotional collapse of epic proportions. I need good healthy crying time. I know, I need to be strong for my family, it just hurts so bad right now. We were hoping people would give us good news since we got her results back, but absolutely none of it has been good. None.

My daughter is going die, and I am praying to my Lord in heaven to help me come to grips and accept that.

I hear His whispers "I am with you always, even to the ends of the age."


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JR