What a sustaining! I want to praise God for his grace in
activating our CES waiver through Medicaid. This was nothing short of 2 years
in the making. I have asked you frequently to pray for this. Many new benefits
come from this for Anna and us. $10,000 for a home or van ramp modification,
horseback therapy, music, massage, and housecleaning! We have a cleaning crew
that helps us once a week. I didn’t know how badly we needed that until after
their first visit. What a humbling thing they do. I’m so impressed with
Medicaid to recognize the “stress of messes” and include housekeeping in their
provision for Anna.
Anna has been tremendous in showing us patience and grace. She
is full of effort which is so encouraging to us “keep on keeping on Anna”. She
appreciates things so obviously, Anna can’t hide it when we address her one on
one. It means so much to her. Two weeks ago she underwent a different kind of
intensive therapy which was very encouraging to us as well. It was a trifecta
of Speech, OT and PT. There was much to be said about the team they assembled
for Anna. She was working on her drumming skills, Weight bearing on all fours, trying
out communication devices, and tracking objects with her eyes.
Unfortunately, all summer long Anna has had a hard time
sleeping every night. She hasn’t been falling asleep easily. She wakes up coughing and needs repositioning
usually 4 times in one night. She’s coughing right now and it I just don’t know
what to do because previously she only acted like this when she was sick. This
has led us to inventory what decisions and medications we have done that could
be causing this hardship. We have found that the Flovent medication does cause
side effects like what Anna is going through. So we are going to try and do
without for a while and see.
God
is in control! He opens doors and answers prayers. We are
not left alone in these decisions for Anna. But also, just because the
medication
is prescribed and we prayed about it doesn’t automatically mean that it
is the
way we should go. (This applies for all treatments that anyone
recommends be it eastern, experimental, old wives tale.) What God would
have for Anna isn’t as simple as obeying the
medicine list. It’s a question of waiting a beat, then counting on
guidance from Anna’s Maker. Being
in step with God, knowing Anna, and remaining unified as her parents
seem to be
critical non-doctor factors that help the most. The Spirit has helped us
see
times in our past where our obedience to God and abiding in the faith
was a
distant second in our medical decisions for Anna. We acted in haste
because we
were told to, or because the waiting room was uncomfortable. Lately we
have learned to read and collect all info, place our
choices before the Lord and wait.
Please Pray:
-A clear path and the appointed God-ordained time regarding
the Nissen surgery, the eye surgery, and tooth pull (all needs to happen under
general anesthesia).
-Should we even get the Nissen? This surgery is currently in
the waiting room of medical decision right now as we wait for a Word from God. It’s
not doctor recommended but it has helped many others.
-For the Lord’s will and grace to be at work for Anna’s
betterment, that she can sleep through the night again and we can find the source
of struggle; that peace would be covering it all.
-For Anna to be able to communicate yes/no choices using
buttons or iPad.
-For Anna’s full healing with perfect vision, intelligent arm
and leg movements, etc….
-For secretion management, increased swallowing and throat
clearing ability; For no more saliva pooling in her throat while she sleeps.
Many thanks,
Nic, Lindsey, Anna, and Simon
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