We may have "the answer" to Peanut's underlying condition. We are waiting on information on how to run the blood test to confirm. The only lab that can diagnose this disease is in Italy. Our insurance doesn't want to pay to send the blood there. We are working with a metabolic geneticist to figure out how to get the blood drawn and send it to Italy.
I don't know what to ask you to pray for. We have always wanted "the answer", the diagnosis, the bottom line. But if this disease is the bottom line, it's not good. :(
We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
7 comments:
If this is the disease, can you do anything to change ... anything?
I know our girls are different, but there have been times that we passed up 'knowing' and other times we fought on to 'find out'. If you need to know fight on - and know that we are praying for you -for whatever it is you need.
You are doing a great job with her!!
I completely agree. Will this diagnosis change anything? I can understand that sometimes the not knowing can drive you crazy though. Praying for peace either way!
I'm thinking about you guys. Praying that whatever is to be will be. xoxo
Praying everything works out!
Like the others said, is there a benefit to knowing if she has this condition? Will her treatment change? Or, will the proof in knowing what she has, just be an answer?
If it costs a lot and you need to know the answer, then fight to get the answer! Otherwise, I would just appreciate that Peanut is the way that she is, which is quite perfect in my eyes! Love and Hugs!!!
Hello! I am new to your blog, and wanted to leave a message that we are keeping your family in our thoughts and prayers! I know sometimes having the answer is scary, but stay strong. I feel horrible the hoops you are having to jump through...hopefully things turn around for you!
Bugg has no diagnosis. I'm totally okay with that. Just recently the geneticist told us that there may be an additional lab test that may give us an answer, too. It's the first time I've thought that I might really like to know what he has.
But actually, it will work out either way. Prayers and hugs!
Love, Bree
did someone all of the sudden put two and two together or something? I know people are saying that its ok that they don't know a diagnosis, but if its something potentially dangerous than you need to know for sure. Whats the name of it?
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