Dear Praying Warriors,
Anna’s 9
inch long G/J tube (feeding) came out today. I came home a little early from
work to take her to the hospital. The procedure to replace it is so quick and I
am so thankful for the skill that those doctors have in interventional
radiology to thread that tube back through as they watch an x-ray video of it
happening. Seriously less than three minutes. Anna cried but it was brief. I
once again I am reminded of the quality of care offered to us and the coverage
of two insurances to not devastate us financially. What providence that the
Lord has orchestrated over Anna and all her needs.
Another
answer to prayer regarding our night struggles at home is that we have a new
night nurse! We went from having two nights covered a week to five! Do pray for
her as she is new to nursing and the world of special needs children. This
nurse has Anna’s approval I can tell by the coos and smiles. I’m starting to
realize how important it is to Anna that someone dialogs with her. She loves
being talked to.
A grace we
have been witnessing is Simon’s actions towards Anna. Sometimes in haste
Lindsey or I will set Anna down on the living room floor and forget to bring
something for her to engage with. So she is just lying there kicking up her
legs and chewing her hands. Then the next thing I see is Simon trying to hoist
a chime rack above her so she can hit it and play. Often when we are outside we
put Anna in her stander so she can enjoy her surroundings as she works in it. After
a sifting through rocks a little while Simon will grab his favorite rocks and
place them on Anna’s tray for her approval. What a little bro! His newest thing
is to kiss her good night. If we forget to let him he will remind us.
We are at
two new beginnings for Anna’s therapy. We are all set to do horseback therapy
once a week which is great for core muscle strengthening. We are also in a
speech therapy once a week that focuses on communicative devices to help Anna
choose by button hitting -may the Lord use that greatly to help Anna express
her cognition and needs to us. Another new group we joined is Hope Kids, they
are a group for families with special needs kids that have life threatening
hardships. They have dozens of free events each month for the entire family or
just part of the family to go to like the Symphony, a movie, a service project,
or a basketball game.
Please Pray:
-We also
praise God for three weeks of ongoing health. She has been coughing a good deal
tonight; please pray for it to pass over without knocking her out for weeks.
-For Anna to
stop hand chewing so much, she has torn skin and sores that we are treating but
can’t seem to get back to wellness.
-For her
upcoming surgery at the end of the month on the muscle of her eye. Those little
tiny muscles also get tone and spasticity. Her eye doctor is convinced that it
would help her vision to do this minor surgery. Pray that we could also do an
endoscopy to see the condition of her esophagus for the reflux battles. This
would prevent another general anesthesia date.
-For our
ramp van application to Medicaid. They will pay for the conversion of a vehicle
up to a certain amount we are trusting for all our needs to be met regarding
the many complications to correctly qualify for coverage. The car portion we
pay for ourselves. We thank God His continued provision of means through
savings and gifts. I thought my first $50,000 car would be a sports car, Lord
willing it’s gonna be a minivan with a ramp in it.
-For this
new “language” of hitting buttons and the time it takes to build up
intentionality behind each click so we can have her choose activities to do or
what to wear. And eventually learn to tell us “yes” or “no”.
Thanks for
praying and believing in the good that God has for us,
Nic,
Lindsey, Anna, and Simon
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