Dear Anna's Prayer Team,
God is growing Anna into one sweet little girl. I have been so full of thanksgiving over how well Anna is doing. I can't say there have been milestones that excite therapists and doctors (reflux, vision impairment, and high tone persist). Most of Anna's well being seems relational. She loves it when we sing. Any fussiness she might have is put on hold if we are singing. I was singing "just a spoonful of sugar" to her today and she was kicking with delight wanting to engage in any way she can what fun.
We see evidence of a girl who wants to communicate but cannot get her message across. Her cognition is at work so may the Lord enable it. We received two things that help Anna express at no cost to us. One is a switch toy that says "hello" and "good bye" for her. It is Lindsey's recorded voice as the greeting when she presses the button. This is in the intro phase. The other is an Upsee, this is a harness that enables any non-weight bearing child to hang from an adult waist and walk in step with them (see the photo below). It is a relational tool because there is an added togetherness that we experience as we walk with her literally. The first time I tried it was Father's Day, that was a wonderful treat. I thank the Lord for the spiritual gift of generosity that He imparts to cause such gifts for our family. (look at that head control!)
Simon is always interested in getting her attention. I can tell that Simon is learning that Anna is different. She is the only person that Simon will gaze at and he will not "win her over." So he remains looking at her wondering why she isn't looking back like mom and dad do. I know many special needs parents struggle when strangers look and "stare" at their child. That has not been the case with us. Most often I see the tenderest side of humanity when they look at Anna. It is one of compassion and frequently followed up with "your daughter is beautiful."
God is growing Anna into one sweet little girl. I have been so full of thanksgiving over how well Anna is doing. I can't say there have been milestones that excite therapists and doctors (reflux, vision impairment, and high tone persist). Most of Anna's well being seems relational. She loves it when we sing. Any fussiness she might have is put on hold if we are singing. I was singing "just a spoonful of sugar" to her today and she was kicking with delight wanting to engage in any way she can what fun.
We see evidence of a girl who wants to communicate but cannot get her message across. Her cognition is at work so may the Lord enable it. We received two things that help Anna express at no cost to us. One is a switch toy that says "hello" and "good bye" for her. It is Lindsey's recorded voice as the greeting when she presses the button. This is in the intro phase. The other is an Upsee, this is a harness that enables any non-weight bearing child to hang from an adult waist and walk in step with them (see the photo below). It is a relational tool because there is an added togetherness that we experience as we walk with her literally. The first time I tried it was Father's Day, that was a wonderful treat. I thank the Lord for the spiritual gift of generosity that He imparts to cause such gifts for our family. (look at that head control!)
Simon is always interested in getting her attention. I can tell that Simon is learning that Anna is different. She is the only person that Simon will gaze at and he will not "win her over." So he remains looking at her wondering why she isn't looking back like mom and dad do. I know many special needs parents struggle when strangers look and "stare" at their child. That has not been the case with us. Most often I see the tenderest side of humanity when they look at Anna. It is one of compassion and frequently followed up with "your daughter is beautiful."
Please pray for the following things as we give them up to God in prayer for Him to speak to us, bless us and give us direction.
-For The Lord to lead us in selling our condo in August at a favorable price because the market indicates this (this will make us debt free and enable Anna to receive those expensive stem cell treatments).
-For our fundraising to continue for the "intensive model" of therapy (not covered by insurance, we are over a 1/4 there)
-For God's timing, that Anna would receive intensive therapy right after the stem cells. That God who is more than able would bless and bring His healing via these treatments
-For The Lord to approve and enable our Medicaid requests:
-A medical, enclosed, twin-sized bed for Anna
-to switch Anna from the "life limiting waiver" to the "CES waiver" (Children's Extensive Support) This would enable additional nurse help and additional therapies like Aquatic Therapy and Hippo Therapy
- For clarity with Lindsey's Job as Anna's CNA.
-For
wisdom and direction as we meet with the GI doctor tomorrow, to see if
Anna is a candidate for the Nissin Fundoplication surgery for her
GERD/reflux
Love,
Nic, Lindsey, Anna, and Simon
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