We were able to bring Dillon home today! Thank you for all your prayers for him and for us. I don't know how I survived the first few days with so little sleep other than by your prayers for me! God gave me the strength I needed to stay alert each day even when I should have been dead on my feet!
The attending doctor walked in to listen to him today and said she heard wheezing - oh no! I was thinking "No you don't! Really! Just let me suction him!" But she turned him over and it was cleared out so we were free to come home. He has one more full day of antibiotics and is on 2 inhalers instead of his nebulizer.
They said he is past the worse of the RSV and should be getting better from here. The Pulm doctor said the RSV shots won't really help Dillon because all they do is lessen the effects a little, but in someone like Dillon he would still end up in the hospital. Good to know that even he thinks I shouldn't get it for Dillon.
The ICS thing I asked you to pray about - the Pulm doctor said how it works is next time Dillon has to be admitted tell them I want to talk to the ICS doctors and to get a hold of him to find out the details of why and all the info. He will then help us get into that program, but it is something I have to wait until we are there to do so the doctors on that team can get to know him while he is there. My doctor didn't see any reason why he shouldn't be able to go this route, though.
I am praying for some miracles... I would like to see Dillon beat his last record of 10 months with no antibiotics or hospitalizations! And I am praying that God would work a true miracle and fix his hips so he won't be in pain, won't be hindered in his ability to move, and won't have to face surgery in a few years! Both of these would be miracles - but so was no antibiotics or hospitalizations for 10 months, so was the fund raising for China, so was the trip to China going off without any problems, so is Dillon's life! Will you join me in praying for these things?
Tomorrow we are back to CHOP for the ortho appointment. I have had a lot of not so helpful people from Ortho so far, but the doctor we are seeing tomorrow is a hip specialist so hopefully he will answer some of my questions. Like are both hips dislocated or just one, can he stand in his new stander, if so should he have a lift under that leg, what positions would be hurting him, what do we do about it, can we do patterning, what do we do about the fact that he isn't using his one leg anymore, etc., etc.!
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The following is a favorite poem of Dad's (Papa's) that he sometimes quotes to me. So appropriate. With love and prayers, Mom (Grandma) K.
THE WEAVER
My life is but a weaving between my Lord and me,
I cannot choose the colors He worketh steadily.
Oft times He weaveth sorrow, and I in foolish pride
forget He sees the upper but I the under side.
Not till the loom is silent and the shuttles cease to fly,
shall God unroll the canvas and explain the reason why.
The dark threads are as needed in the Weaver's skillful hand,
as threads of gold and silver in the pattern life has planned.
Benjamin Malachi Franklin (1882-1965)
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