Friday, November 3, 2017

Thanksgiving for Many Things






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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