We saw both Dr. Kabbani today and Dr. Cook. Both were amazing.
Dr. Cook wants us to take Grace off the steroids as of today -- then in three weeks we'll go in for a test to make sure that her body is producing the steroids that it should. If all goes well Grace (and us) will be able to join the world in three weeks. I have to be honest -- I am cautiously optimistic about this. I don't want to be disappointed -- I don't know that I could take that.
Dr. Kabbani let us know that Grace's EEG continues to look the same - no worse but no better. This is amazing to us because she is doing such wonderful things. Playing, crying, standing on her own two feet (with assistance) - she is very close to sitting all by herself, she babbles, she plays and reaches for things. We were hoping this meant good things (like an improving EEG). Kevin called and I followed up with the Minnesota Epilepsy Group today-- we are increasing the med dosage again.
Today my heart is sad for her, and for her future, but I hear her now playing with the bird on the mirror -- talking-- and when I turn around her little self is in snowman pajamas with feet -- and I feel small rays of hope.
Joy
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Joy and Kevin
I am certain that being with Gracie daily that it seems like small steps being made as she progresses. As I read your bolgs though I wish that you could feel the excitement and hope that I hear in her development.
I trust in the Lord that the life of purpose that He has placed in Gracie brings Him great joy - not for her afflictions but for the hope that He has placed in her. I am reminded of Jeremiah 29:11 that says:
For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.
Please know that I continue to lift Gracie and the both of you in my prayers as I trust in God that He will be faithful to display His love for each of you in His perfect timing and according to His will.
Abundant Blessings,
Jim McConeghey
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