The lazy rainy days of . . . November

I haven't been out of the house for two whole days;  probably a record for me. This morning was rough as Todd and Shae went off to school and I knew it was going to be just Kourtney and I to face the day. The happy humming of the vaccum as our dear and faithful cleaner Anna was busy making our house spic and span, and visits by very special people made the day less quiet. There is more Peace in our home now then there has been in years. There is no more pushing Kourtney to walk straight, do homework or negotiating for 5 more minutes of sleep. No more outbursts of tears saying she can't do this anymore. No matter how much I encouraged her the more I realized that a regular routine had become way too difficult for her.  I try to wake her up around 8, we have moved all her dressings and supplies to her bedroom. It just seems so much simpler now.  This morning I did most of her morning routine while she was on the bed. We were going to go out for a walk, but the rain didn't let up.  I am realizing that Kourtney's stress level, was affecting our whole family more then we really knew.

There isn't a lot to report from a medical perspective, except Kourtney is swallowing better after her dilation. The radioloigist who did Kourtney's dilation is now on my very small list of doctors who will never touch her or any child with EB ever again. Kourtney has had two dilataions done before and never has she experienced the pain afterwards that was inflicted on her. (She wasn't intubated so it was not the tube that caused it).

I have emailed all the doctors and have requested a meeting to discuss what needs to be done regarding Kourtney's care. The one thing that gives me HOPE right now (call me crazy) is a blog post from August 2009 . . . The Bone Marrow Transplant.

In all honesty I believe it will happen one day but it will happen at Children's Hospital and it will be covered by our health care. I believe there will be a clinical reason to get it done and that reason is her anemia issues that I blogged about a month ago. A bone marrow transplant would replace her tired worn bone marrow with healthy under worked bone marrow.

It seems like the perfect script.....but once again I have no control. Kourtney's is God's and I have to place this in HIS hands. Right now I am enjoying the blanket of tranquility over our family right now and for that I am thankful.