Give and Take

Today little man had three big doctor appointments. Cousin Everett from Boston sent him a balloon and flowers to cheer him up about it. He’s so thoughtful.

Here’s what we learned from each appointment:

Orthopedics

  • Feet flexibility has improved since his one month visit
  • Right leg is stronger than the left, including the quadriceps, which will cause muscle imbalance…would be much more encouraging if both were equally strong (Pray for left leg to get stronger!)

    Thunder spirit in the waiting room. You can do it, boys!

  • The doctor explained that Finn would most likely need a brace that extends above the knee on the left leg and an ankle brace on the right leg to begin learning to walk
  • Then he clarified “walking: ” ambling with a sway to and fro due to underdeveloped glute (butt) muscles and hip instability
  • He said most of his SB patients actually prefer a wheelchair even though they can “walk” simply because it attracts less attention. Pragmatically, it gets them from “here” to “there” much easier. Basically we’ll leave it up to Finn if he wants to walk or not and we’ll give him all the tools he needs either way. (Pray for patience and contentment for Joey and I)
  • This is tough for me because it’s not as easy as muscular rehab…I work in a business where if something’s weak, you train it to strengthen it. In Finn’s case, the permanent spinal nerve damage is the main cause of his impediments.
  • Still no foot casting necessary at this point. Sweet.

CT Scan

  • Linda strapped Finn down in a straight-jacket of sorts as the table moved into the machine
  • His eyes crossed as he watched the wheeling, moving parts scanning his brain. He was a champ…the bottle helped!

Neurosurgery

  • Head circumference is down from 99th percentile to 75th! Woohoo! This means the shunt is working. (Pray it continues.)
  • Went over CT scan results: much more fluffy brain matter than when he was born! Better to think with.

    Pic on left is today (more blue stuff=brain matter!) and pic on right is at birth. Wow. Praise God for the shunt.

  • Developmentally doing very well thus far, however…
  • He’s missing (in part or entirely, not clear) the portion of his brain called the corpus callosum. It connects the right and left hemispheres of the brain and facilitates communication between them. This is totally unrelated to Spina Bifida…just another “very rare” congenital birth defect. (Pray for a miracle that this part of his brain “reappears.”)
  • There is a wide spectrum of the effects of its absence. It can be as minor as poor eye/hand coordination, which we already think is an issue for him, or as severe as autism and chronic seizures. (Pray for minor to NO developmental delays and normal brain functioning. No seizures or autism, please.)

Feeling thankful because IT CAN ALWAYS BE WORSE, but also a little bummed out, we went to our favorite place for delicious carbohydrates: Prairie Thunder Baking Co. in Midtown OKC. I don’t even like biscuits and gravy, but these puppies make any bad news just a little bit better.

“He gives and takes away.”(Job 1:21)

For the longest time I saw this verse from one perspective: He gives good, he takes away good–which is bad. But perhaps he gives bad, and takes away bad–which is good. Or maybe he gives good and takes away bad—which are both good. Confused? I think God does all these things. Praying for him to give and take away in Finn’s life.

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19 thoughts on “Give and Take

  1. Joey and Ash,
    Praying for these specifics. Sweet Finn is persevering through these doctor visits like a champ, and so are his parents! Mighty Finn. Love you three!

  2. Ash, I will pray for what ever God’s will is for precious Finn. We don’t know what’s best for you guys and Finn but He certainly does. Praying for many blessings girl!

  3. Wow Ashley,
    Praying for You, Joey and baby Finn. God is able. He is good. Praying for the ‘reappearing” of that portion of Finn’s brain and for no developmental delays. He’s a strong little guy, I’m excited to watch how Jesus will continue to work on Finn’s behalf. And, thank you for the gentle reminder through your story of how much I have to be thankful for. Finn is already impacting lives. 🙂

  4. I hope you are giving yourselves space to grieve without having to put a “shine” on the tragedies that you experience in regard to Finn’s health. I’ll be praying for you all

  5. I admire the bravery of all three of you. Continuing to pray for all aspects of this journey. “…but God meant it for good…”

  6. the Doke’s are standing on His promises with you guys! in agreement with each of your requests, praying and contending for Finn! what a powerful little one he is already and without a doubt, the BEST parents in the world!

  7. I am sorry for your disquieting day. Your strength and faith are amazing and they will carry you on. Finn is a trooper and his sweet face demonstrates how much love he receives and gives. I think of you and your struggles daily.

  8. Prayers you ask, prayers you will receive. I think Finn is the sweetest thing and God has plans for him! We may not know them yet but the Lord Father does….

  9. I am thrilled with Finn ‘s good progress and praying about the other areas where he can improve and develop. Thank you for your courage in sharing and keeping us posted. Ashely, you and Joey are amazing and such a light for all of us.
    Always Praying, Sarah R.

  10. Pingback: ER | our invincible summers

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