Dear Prayer Team,
Thanks for praying for our visit to the Neurologist regarding the PMG diagnosis. It was a meeting that we were so prepared for that he didn’t tell us much we didn’t already know, he referred us to a Geneticist for further help regarding PMG. The problem Lindsey and I have is looking at Anna’s medical needs in harmony. We differ on what we think the causes are what it will mean for Anna’s caretaking, what interventions to take, etc…
We also had a rough visit to our rehab doctor who is in charge of assessing Anna’s cerebral palsy. She checks the range of motion, flexibility, and tone management, all things muscle, bone, and joint. Our doctor did not like what she saw. The ball in Anna’s hip joints is drifting out of the joint. Anna is in the early stages of hip subluxation. Her previous x-rays of the past 3 years were showing the ball in place, but not this one. It’s always hard news when something we thought was good and healthy becomes problematic. I recall thanking God for the blessing of Anna’s hips because we were praying for another kid who had surgery to deal with hip subluxation. I don’t withdraw my thanks, as I’m writing this I am reminded that the Bible tells me to press onward, I cannot put my hand to the plow and look back, so onward then in perpetual thanksgiving.
By God’s grace, we are one of the few families that have had almost no human error in Anna’s birth, surgeries, and treatments. Many HIE families have malpractice lawsuits and extra bitterness from unforgiveness. God has spared us from all of that. There was one hardship we encountered when Anna’s first rehab doctor prescribed Baclofen when she was a year old. It was a mistake because all the core muscles we were building on in therapy (for head control and reflux mainly) crumbled under the effect of the drug. It’s a strong drug meant for people with persistent high tone, Anna did not meet the criteria according to two PT’s. So we moved to discontinue the drug and got a second rehab Doc (her peer) who said that Anna could use topical intervention not a full body muscle relaxer. We had to bring this prescription error before the Lord and forgive the doctor; Anna was notably disadvantaged from her hasty prescription. That was two years ago, now on this visit our doctor suggested a muscle relaxer because of Anna’s increased tone. So we started Anna on a low dose of a different drug last week. This was heavy too because we want betterment and progress.
The last bit of hard news from the rehab doctor was that Anna is developing a scoliosis in her spine. Spines need to be 10% out of bend for it to be scoliosis, Anna is at 1%. For a healthy person 1% is not much to worry about, but for Anna who has head control issues, who can’t sit unaided nor walk this is not to be ignored. The direction for fighting this is positioning. Anna’s wheel chair is the best. The biggest positioning issues to fix are the car seat and the bed. This means we will be looking for a ramp van with anchors so Anna can stay in her chair while in the car. We also applied through our insurance for a special sleep lounger called a Peapod. Lord willing these will come before her back would get worse.
I don’t want to paint the picture that it is all bitter vinegar to drink. Medically maybe, but we are having one sweet summer. Anna has a gentile spirit and is glad so often. She is feeling better, free from nearly all of her respiratory ills. God has blessed us with many family days with much goodness. We have enjoyed an increase in sleep now that Simon is sleeping through the night and Anna is not sick. There has been enjoyable food, walks, time on the porch. We moved our family devotion times up to right after dinner and we have found that to be a greater time together for reading the Bible and singing than at the end of the day. Thanks for praying.
-for our unity in medical decisions because we count on Him for Anna’s best as well as a wedge-free marriage.
-for all our equipment needs to be met, for a ramp van and the Peapod lounger
-for an improvement of Anna’s hip joints, for relaxed muscles and for a better spine.
-for the activation of the CES waiver that we have been accepted to but Medicaid hasn’t processed yet.
-Lindsey’s mom coming out to be a support to us, pray that she would be able and blessed to care for Simon and Anna. Pray for Lindsey and I to seek the Lord as we spend some time together just the two of us this coming week.
Nic, Lindsey, Anna, and Simon