Hand to the Plow, Looking to Christ

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.    

Please pray

-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

We Call This to Mind

Dearest intercessors for the faith,

Please read and pray through this, I have been short on words about Anna's latest diagnosis, and so Lindsey who grasps medical things better than I took the time to write her heart into this entry. Here are her words:

The past few weeks have been difficult for us. A recent MRI confirmed our Neurologist’s suspicion that there is more wrong in Anna’s brain than what was diagnosed in the NICU.  At birth, Anna suffered HIE (Hypoxic –lack of oxygen, Ischemic – lack of blood flow, Encephalopathy – affecting the brain) along with bleeding and swelling in the brain. These are considered an injury to an otherwise healthy brain.

The new diagnosis is Polymicrogyria (Poly – many, Micro – small, Gyria – folds of the brain). This is a big deal. This is a malformation of the brain tissue, not an injury. It means Anna’s brain wasn’t healthy to begin with, even if it didn’t have HIE. It means that even if we could heal the lack of oxygen, we can’t do anything to fix the structure of her brain. We still don’t know much about it. We don’t know why she has it, why they didn’t find it in the NICU, if it was caused by the HIE, or if it was the cause of the HIE, or what the statistical odds are of having both PMG and HIE independent of each other. We know it means that Anna probably won’t develop many new skills. The scariest thing it means is that she is a risk for developing untreatable seizures and her life expectancy is shorter. This has been tough. We thought we were done learning about everything that was wrong with Anna, and here comes PMG.

Day-to-day life goes on. PMG doesn’t change our therapies, or feeding schedule, or what makes her smile, or when she needs a bath. We just keep on going, loving our little girl. On another level, it rocks our understanding of what we can offer Anna in terms of treatments. When we thought we were dealing only with an injury, we thought we had options. Western medicine would tell us to capitalize on the brain’s ability to create new neuropathways through therapy, to retrain the brain through the body. Eastern medicine would tell us to take supplements that promote cell growth and acupuncture to increase blood flow to the brain. Experimental science would say hyperbaric oxygen chambers can reverse the effects of HIE and stem cells can regrow dead brain cells. And what can we do to fix PMG? The answer is nothing. Western medicine cannot retrain her brain; Eastern medicine cannot promote restoration in her brain; Experimental science cannot regrow her deformed brain.

Our hope in all of these treatments is gone. There is no recovering from PMG and that feels devastating. It feels like all the therapy, specialists, medication, and equipment that are aimed at improvement are pointless. All we can do is try to manage the symptoms of this terrible condition, however imperfectly, and to make her as happy and comfortable as possible for the years she has left.  There is no hope for healing for Anna. Except from one source – Jesus.

We are reminded of the words in Lamentations 3: “He has walled me in so I cannot escape; Yet I call this to mind, and therefore I have hope…” And here is what we call to mind, and this is why we hope: Our Jesus created the universe. He created Anna and her brain and saw her in the womb, fearfully and wonderfully made. He healed a blind man, a bleeding woman, a paralyzed man, and lepers. But those things aren’t worse than PMG. So we call to mind that he healed a man possessed with a legion of demons and a boy foaming at the mouth while seizing. But the only thing worse than PMG is death. So, we remember that he raised Jarius’ daughter from the dead, Lazarus from the dead, and a widow’s only son. And if He has the power to control life itself, Jesus is able to heal Anna’s brain.

Whatever God did then we call to mind because He can do it now. He hasn’t changed and He hasn’t gone away. We don’t pretend to have all God’s plans figured out. God works in mysterious ways. But we know that His power and Presence are still available for us on Earth. We know that He is good and loving towards all His children. We know His name is Healer. We know He hears and answers prayer. We know His character and the testimonies in the Bible, therefore, we know He is willing. We know that He will wipe away every tear. We know He tells us to ask, and to keep on asking. -We call all these things to mind.  

We cannot think anything other than that PMG is a temporary condition. It may be gone tomorrow, or plague her till the day she sees Jesus face-to-face, but what a glorious day that will be – free from pain and struggle and in the presence of Savior and Healer. Our job is to be faithful in prayer and extravagant in worship and let God decide how it is best to answer prayers. Lamentations 3:26 says, “It is good to wait quietly for deliverance from the Lord.” And that’s what we are doing - waiting. Deliverance is coming. We are waiting for the moment when Jesus says, “Anna, get up.” Because her healing is not a matter of IF, but of WHEN and WHERE.

Prayer Requests

-Pray for our meeting with our neurologist Dr. Miller on Monday at 11:30 to talk about all things PMG. Pray that we would come prepared with a list of questions, that he would be given wisdom and utilize the skills he has to best serve Anna.    

-For Anna to get into the Assistive Communication program at Children’s Hospital; there is a waiting list.

-For paperwork to be done correctly so that Anna can start Medicaid services under the CES waiver

-For Anna's full healing at the perfect time

-For financial grace as we look to invest in a ramp van with anchors to keep Anna in her wheel chair.

-Praise for our church families that help us out regularly, this week was particularly notable with a dishwasher install and a fence for our patio.

-Praise God for Anna improving in her throat and while she sleeps. She is wire free, sleeping through the night.

Bless you,

Lindsey, Nic, Anna, and Simon