Thursday, August 17, 2017

The Kingdom of His Beloved Son

Blessings and Greetings in the Lord Jesus Christ, Dear Prayer Warrior,

The content of these prayer emails ought to be God-glorifying and meaty in faith. However, it seems that my emotion can often overwhelm my words and deemphasize the Truth that anchors us in exchange for feelers. So now, I want to honestly display the full spectrum of God’s works in our lives as much as grace can reveal it to me. It will always include emotion but they are not leading they are following behind our faith.

As an unbeliever, I felt so alienated, alone, and misunderstood. Art was the only way to explain my inner content outwardly, but I remained prideful in my aloneness. In truth am never alone and never unloved. Anna’s needs have humbled me time and again to more clearly latch onto God. She has helped me discover just how interventionist and interested God was/is in all our lives. Praise Him that He is. The God of the Bible’s supreme intervening love and interest with us all came in the person of Jesus Christ in life, death, and resurrection, even though many reject Him.

One of my favorite verses of assurance is Colossians 1:13 “He (God) has delivered us from the domain of darkness and transferred us to the kingdom of his beloved Son,” I cling to the verb tense here! We are talking spiritual victory in Jesus no matter to situation. You see, Anna is sick again with a fever, stuffy nose, constant cough, and a thrush infection. We had to break out the suction machine, humidifiers and remember just how hard it is to see Anna go through this and how demanding it is on us. The domain of darkness still tempts me to think that life sucks, that pity parties are justified, and complaining actually gets me somewhere.  Or darker still, that Anna’s needs will tear apart my marriage, that I don’t have what it takes to father Anna, or that she might not see her next birthday. There is legitimate possibility to all of that. But I reject those paths because they are in the domain of darkness. I have faith in Jesus, He is living through me. I no longer live with current problems that give way to future fears. I have a High Priest that I look to for answers. Living in “the kingdom of His beloved Son” makes me focus on Him instead of myself for the answers and provision. I stand solution-focused on Jesus instead of problem-focused on me. It takes faith and grace to see things His way that is why clinging to the promises of the Bible is so helpful.  

God is so good because in the weeks leading up to this current sickness He has brought Lindsey and me in unified hot pursuit of Him. We are having much renewal by simply focusing on Jesus, experiencing the presence of the Holy Spirit, and praying our lives out to Him in utter dependence. Our medical discussions about Anna are more supportive and open to each other. We are always encouraging one another in the faith. Lindsey has been so intentional to talk about what our day has been like abiding in Jesus. We discuss the spiritual strongholds Satan has been using to wedge into our relationship, then we go onward in prayer and in the Scriptures to find the biblical too needed to enter into battle equipped as a soldier of Light. We are finding obedience to be fruitful in things like fasting and prayer together. So this intensity of Anna’s new illness does challenge our sleep and new found gracious harmony.  

God will make a way and show up as we stand our ground and fight for the faith!

Please Pray:
-For Anna’s full recovery from this illness, ASAP. that God will keep her airway clear.
-For patience in enduring because none of this is without a purpose, may we glorify God through this.
-For more reminders in our everyday that we have been taken from the domain of darkness and placed into the kingdom of the beloved Son. May we ponder richly the implications of this as we go about living for Jesus.
-For continued unity in our marriage, household needs, and mutual diligence in seeking the Lord.  
Thank you,

Nic, Lindsey, Anna, and Simon

Sunday, August 6, 2017

The Spiritual Waiting Room for Medical Decisions

What a sustaining! I want to praise God for his grace in activating our CES waiver through Medicaid. This was nothing short of 2 years in the making. I have asked you frequently to pray for this. Many new benefits come from this for Anna and us. $10,000 for a home or van ramp modification, horseback therapy, music, massage, and housecleaning! We have a cleaning crew that helps us once a week. I didn’t know how badly we needed that until after their first visit. What a humbling thing they do. I’m so impressed with Medicaid to recognize the “stress of messes” and include housekeeping in their provision for Anna.

Anna has been tremendous in showing us patience and grace. She is full of effort which is so encouraging to us “keep on keeping on Anna”. She appreciates things so obviously, Anna can’t hide it when we address her one on one. It means so much to her. Two weeks ago she underwent a different kind of intensive therapy which was very encouraging to us as well. It was a trifecta of Speech, OT and PT. There was much to be said about the team they assembled for Anna. She was working on her drumming skills, Weight bearing on all fours, trying out communication devices, and tracking objects with her eyes.

Unfortunately, all summer long Anna has had a hard time sleeping every night. She hasn’t been falling asleep easily.  She wakes up coughing and needs repositioning usually 4 times in one night. She’s coughing right now and it I just don’t know what to do because previously she only acted like this when she was sick. This has led us to inventory what decisions and medications we have done that could be causing this hardship. We have found that the Flovent medication does cause side effects like what Anna is going through. So we are going to try and do without for a while and see.  

God is in control! He opens doors and answers prayers. We are not left alone in these decisions for Anna. But also, just because the medication is prescribed and we prayed about it doesn’t automatically mean that it is the way we should go. (This applies for all treatments that anyone recommends be it eastern, experimental, old wives tale.) What God would have for Anna isn’t as simple as obeying the medicine list. It’s a question of waiting a beat, then counting on guidance from Anna’s Maker. Being in step with God, knowing Anna, and remaining unified as her parents seem to be critical non-doctor factors that help the most. The Spirit has helped us see times in our past where our obedience to God and abiding in the faith was a distant second in our medical decisions for Anna. We acted in haste because we were told to, or because the waiting room was uncomfortable. Lately we have learned to read and collect all info, place our choices before the Lord and wait. 

Please Pray:
-A clear path and the appointed God-ordained time regarding the Nissen surgery, the eye surgery, and tooth pull (all needs to happen under general anesthesia).
-Should we even get the Nissen? This surgery is currently in the waiting room of medical decision right now as we wait for a Word from God. It’s not doctor recommended but it has helped many others.
-For the Lord’s will and grace to be at work for Anna’s betterment, that she can sleep through the night again and we can find the source of struggle; that peace would be covering it all.
-For Anna to be able to communicate yes/no choices using buttons or iPad.
-For Anna’s full healing with perfect vision, intelligent arm and leg movements, etc….
-For secretion management, increased swallowing and throat clearing ability; For no more saliva pooling in her throat while she sleeps.

Many thanks,
Nic, Lindsey, Anna, and Simon

Saturday, June 24, 2017

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

Thursday, June 15, 2017

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

Friday, May 26, 2017

More Than We Can Handle

Dear Prayer Warriors

Anna's hearing really is an intact gift from God. The test today shows what marvelous hearing she has, she was responsive to the whole spectrum of sounds. I could not imagine how much harder things would be if her hearing was damaged. I thank God for upholding Anna's hearing ensuring that she can listen and communicate well through that sense. It makes me want to be a chatty-Cathy around her. 

We can pray more specifically for Anna's full healing as we take in the weight of her new diagnosis. She has a unique brain.  This is a hefty burden that is why I'm asking brothers and sisters in Christ to come to our aid and pray, believing God for exceedingly more than what we ask for. 

Our neurologist diagnosed Anna with polymicrogyria. Which is a condition almost always unrelated to brain injury due to lack of oxygen. There are several categories of this diagnosis. Based on the radiologists notes and the brain regions impacted, Anna is showing  Bilateral frontoparietal polymicrogyria. This has yet to be confirmed by our neurologist, we just don't know right now. Clearly this is more than what we can handle on our own, what does all this mean? That is why we ask God to handle this for us, with us, that we might see His Mighty Hand Shepherding us. Show us your glory Lord. 

Since we are up late swimming in the information about it. Please pray that we would let the Lord minister to us as we surrender to our mistake-free God and take Anna as is! We have been praying and singing most the afternoon and evening. We will follow up once we get the genetic testing back and have a better grasp on this. God is so good. God is so good, God is so good, He's so good to me.  alleluia. 

Have Thine own way Lord. 

Nic, Lindsey, Anna, Simon 

Thursday, May 25, 2017

Upcoming Days

Dear Prayer Friends,

For my ten year faith birthday I embarked to give back to God a written testimony. Its taken 6 months or so and I still am not done. Remembering is so good! Here's a sample:

My heart hosts the living God, Jesus Christ. I can think of no greater grace than my condemnation paid for in Christ and a new life beginning orchestrated by His Spirit. Following Jesus, counting up the cost and abiding in Him has rendered me unrecognizable and trustworthy of a bride and two babes. What a new life marked with abundant grace. I have learned that I have been bought and so this new life I live is not my own it belongs to my Owner. I don’t call the shots, I cannot demand things go my way or yell when I am not at the center. Walking with my eye on Jesus means that come what may I know my redeemer lives and is worthy of my life and worship.

All that Gospel goodness makes me count on Christ more than doctors. We have experts and tests but if I had to choose I would rather have a Shepherd who is Sovereign over all things guiding me through all of our storms than a meteorologist giving me the details of what to brace for. 

As for Anna, she is doing better, her wonderful coos and gasping squeals are back. Tomorrow morning at 10 AM Anna is going under general anesthesia for close to the maximum time for a kid her age (3 hours). She will have two procedures one is a deep MRI and the second is a hearing test. The MRI is the one ordered 6 weeks ago by neurology when they observed an abnormality on a previous brain image. Because Anna is nonverbal the only way to get an accurate hearing test is to monitor brain reactions to sounds. We know she hears well, but could it be better? Same with the brain issue, could something be found that is treatable and make her cognition soar? 

Please Pray: 
-Lets ask the Lord to surprise us with the findings of the MRI. Also pray for Anna to do well in recovering from the anesthesia with no side effects.  

-For Lindsey’s solitude retreat this weekend. That Satan would not distract her from the purpose of meeting with God. For rest and for worship songs to fill her throughout the weekend. For a safe travel to the mountains and back. And for Nic to be meeting Simon and Anna’s every need. 

 - Pray for Anna to sleep through the night unaided. With good throat clearing and no reflux. Anna is still struggling a little at night, she was off supplemental oxygen for about a week but now back on. We are all getting better sleep.

"Living for Jesus who died in my place,
Bearing on Calv’ry my sin and disgrace;
Such love constrains me to answer His call,
Follow His leading and give Him my all.

Living for Jesus wherever I am,
Doing each duty in His holy name;
Willing to suffer affliction and loss,
Deeming each trial a part of my cross."
Grace and Peace,  
Nic, Lindsey, Simon, And Anna

Sunday, May 14, 2017

Christ's Welfare Amid Spiritual Warfare

Dear Prayer Warriors,

God brought us home from the hospital after four days. I meant to write but my ability to concentrate diminishes the more sleep deprived I am. Thanks for praying faithfully even when I am not faithful at updating you all. We were so tired. Anna came home with an oxygen tank for the nights. I’ll always have a little pep in my step during discharge days; I get excited about the betterment, God’s hand of healing being so evident and it marks the end of family unit separation. I love resettling at headquarters (home) it makes me happy because I know Anna is embracing her familiar, family things, routines, and uninterrupted sleep.

We have continued hardships and demands with Anna. This used to be a girl who slept through the night with no cords attached six months ago. Let’s believe that the Lord can restore such peaceful rest because right now she’s got the cannula on, the pulse ox, and a continuous night feed into the intestine. She’ll wake after about 2-3 hours crying needing suctioning or supplemental food. We have been short on sleep but we always make it a point to thank God for the sleep we did get rather than focus on the sleep we didn’t get.

In a way I feel this current trial more significantly than more medically dangerous ones because there is a spiritual attack intensifying things. Many spiritual warfare elements are compounded in this current storm. 

1. Temptations of various kinds are more frequent. Praise God that temptation is the opportunity to run to the Mighty Warrior who saves rather than the sin. I feel my mind is weak and rambling allowing me to laugh at foolish things or impulse buy the entire Little Debbie catalog. Even stuff that has been Christ’s victory in my life for ages tries to rear its ugly head. I go to Jesus and draw upon His past victories in me. He waits with me in the temptation and soon enough it goes away. 

2. I find myself in the heat of the moment believing lies that I know the Bible counters but the lie suits my mood better. There is only defeated when thinking I lean on my own understanding. I am eager to take my thoughts captive and assess its source then reject or accept it. 

3. In times of exhaustion in caregiving I find myself frustrated at Anna, feeling defeated as my suctioning/repositioning/drug administration only irritates her into a Cerebral Palsy extension and tears. In the past I would be overwhelmed like that and just stop and pray. But recently I get impatient, continue the task even though I should relent. The situation is basically me going on my own strength instead of crying out to God for His nearness. Anna will always have it harder than me that why I must gladly serve her. God has given me a memory verse to recite to offset that moment of frustration. So when Anna extends and is inconsolable, I say to the Lord: “You will keep the mind that is dependent on You in perfect peace, for it is trusting in You.” Isaiah 26:3

Please Pray:
-For Anna’s oxygen level in her blood to stay high 95% or better without supplemental oxygen.
-For her airway to be clear not needing suctioning, steroids, or the “shaky vest”
-For providers to all the benefits Anna qualifies for but we don’t receive (night nurses (we still have 5 nights without a nurse), for a respite care provider, a house cleaning, for the ramp for the van)
-For patience as we wait for God’s leading regarding Anna’s reflux. We need her to tolerate a higher intestine feeding before we can consider the Nissen surgery.
-For God’s holy, presence, Jesus’ imputed righteousness and the Spirit’s illumination of Scripture to keep me strong in the Lord for the fight at hand.
-For the family devotion time to be moved successfully after dinner time because our bedtime to-do list has become too long.
-For strength and gratitude as we wait. We wait for Jesus, for Anna’s healing, for every spiritual blessing, for our trails to conclude. 

Happy Mother's day,

Nic, Lindsey, Anna, Simon