“Those who understand God's sovereignty have joy even in the midst of suffering, a joy reflected on their very faces, for they see that their suffering is not without purpose.” —R. C. Sproul 

Wednesday, Layla had another EMG nerve study. This one was performed by a different neurologist, Dr. Rhem. God has been gracious to provide yet another kind and compassionate doctor on Layla’s team, who we love. Not only had she read through all of Layla’s history prior to our appointment, but she also personally spoke with Dr. Campbell (Layla’s orthopedic doctor who we love). She has specific questions for Layla. Yes, she spoke directly to Layla and worked to hear her whisper answers. It may seem like a little thing, but so many doctors rob Layla (15 years old) of some of her dignity by bypassing her because it is easier to speak directly to Justin or I. 

Dr. Rhem stopped throughout the EMG to compare her results to the ones from a little over a year ago. During the test, she stopped and asked Layla is she ever has difficulty swallowing. Yes, a resounding yes. Sometimes, Layla is unable to swallow her own saliva. She describes it as though her body won’t do what she’s telling it to do. Dr. Rhem expected that answer because it goes along with what she saw and is suspecting. She also asked detailed questions about current and past treatments, as well as the results or lack there of. She was incredibly encouraging in that she would not expect to see any results from the treatments that she’s undergoing with what she suspects may be going on. It was uplifting to have a doctor recognize that Layla is putting in the hard work, despite there not being any improvements. 

Over the past year, there is a significant decrease in Layla’s nerve function. Dr. Rhem suspects that Layla has something attacking either her nerves or the myelin (protective layer surrounding the nerves). She suspects that Layla may be dealing with Chronic inflammatory demyelinating polyneuropathy (CIDP) or something similar. However, this requires some further testing. Layla needs to have a lumbar puncture which requires her to be sedated(scheduled for March 13) and a spinal MRI with contrast (scheduled for March5). The MRI is complicated by the position of Layla’s right leg; because she is unable to straighten it there have been machines that she was unable to fit into before. One time, it required Justin to reach through the MRI machine to straighten it enough to fit into the machine, and he had to hold it there for the duration of the test. Incredibly painful for Layla. We’re praying that there is a machine at Cooks to accommodate her position. 

In addition, Dr. Rhem wants us to meet with a geneticist to delve deeper into our family history. We met with the rheumatologist next week, and Dr. Rhem said she’ll be watching for the results. She’s going to reach out to Dr. Campbell To discuss things further, but currently, she thinks that we should wait on both the muscle biopsy and tendon release surgeries. 

Please thank God for providing another loving doctor. Pray for Dr. Rhem’s wisdom as she puts for a care plan for Layla. Although we have dates set for testing, Layla has also been put on a cancellation list to try and get tests completed sooner. 

“To suffer as a Christian carries no shame. Peter concludes: "Therefore let those who suffer according to the will of God commit their souls to Him in doing good, as to a faithful Creator" (1 Peter 4:19). Here, Peter erases all doubt about the question of whether it is ever the will of God that we should suffer. He speaks of those who suffer "according to the will of God." This text means that suffering itself is part of the sovereign will of God.” —R. C. Sproul

Two weeks ago Layla saw Dr. Campbell who is an orthopedic surgeon and our new favorite doctor. Most doctors skim over her extensive history from the past three years, but he read through everything. Today, he called Justin and I to have a 15 minute phone call about his plan for Layla’s care. A call that most doctors would have charged an office visit for, but he didn’t. He was so concerned about Layla’s condition that he wanted to speak to us as son as possible about a plan that he has devised! 

First, he wants Layla to have another EMG nerve study, electromyography, to allow him to better understand what is happening with her legs and feet. Secondly, he wants her to see a rheumatologist/immunologist to have an exhaustive test done to ensure that she does not have any underlying conditions that have been overlooked. Third, he wants Layla to have nerve blocks in her legs to both allow her some relief from pain and to diagnose any other issues that may be going on. During this procedure, he also wants to perform a muscle biopsy. Finally, assuming that nothing from any of the tests say that it is not an option, he wants to perform multiple tendon release and relocation surgeries; he believes that this will relief an enormous amount of pain that she is suffering due to the contractures. It would also allow them to fit her for braces and use therapy equipment that will put her in an upright position (possibly helping the gastroparesis as an added bonus) and simulate walking. 

Layla continues to go to Fort Worth for physical therapy twice a week and occupational therapy once a week. She’s gone through multiple G. I. tests over the past few months, resulting in yet another diagnosis and a new insanely expensive motility drug ($550+/month), but God has kindly provided for this the past two months. Overall, not much has changed. She is no longer able to eat the chickpea cereal but is eating some salt and vinegar almonds. Although less frequent, she continues to have the non-epileptic seizures. Most often, these episodes end with her losing the use of her left arm (sometimes both) and leaves her completely exhausted. They also coincide with severe POTS episodes. 

We’ve been reading that service dogs can be trained to not only alert prior to passing out from POTS, but they can also help prevent passing out. Getting one is well beyond our means, but we know that if it is His will, it is possible that God can provide one. 

Please praise God for providing Dr. Campbell and for his compassion towards Layla. Please pray for the wisdom of Layla’s doctors and for Justin and I to make the best decisions for her care. 

“Do not let your happiness depend on something you may lose.”

 --C. S. Lewis 

I realize that I have been remiss in giving recent updates in regards to Layla’s health. Overall, there have not been any changes. However, we have had some recent tests and great doctors that we have met.

Two weeks ago, Layla had an outpatient surgery for an endoscopy and biopsy of her upper GI tract. Everything looked anatomically correct. Initially, she felt great after the procedure. But by the following afternoon, she was very uncomfortable. In an ideal situation, patients get up and walk around as quickly as possible after awakening from anesthesia. However, as she is unable to walk and movements are very limited, it caused Layla to have a longer time of added discomfort with no ways to give her relief. She is feeling back to herself now though. The day after this test, Layla had a scope of her throat and vocal cords which determined that they also are all anatomically correct, and her inability to speak above a whisper is indeed neurological.

This past week, Layla had a visit with the pulmonary doctor at Dallas Children’s Hospital. We’ve been waiting for this appointment for about four months, but it was well worth the wait. We were amazed with the care given to Layla. Breathing has been difficult for her for a couple of years now. She’s unable to take deep breaths or to make herself cough. In fact, she isn’t even able to blow out a candle. At our visit this week, she was required to perform multiple lung function tests; a couple of them had to be redone multiple times because she was too weak to even move the gauges. As it turns out, her lung function is even worse than we expected. Dr. Ghera specializes in treating pulmonary issues in Muscular Dystrophy patients. While there, she and her team spent well over an hour with us. Throughout this journey, we have learned that very few doctors take the time to read through Layla’s extensive medical history prior to our appointments; however, Dr. Ghera and her entire team were all familiar with Layla’s history and were able to ask specific questions. It was refreshing to have a doctor who was already invested in Layla. We left this visit with some tools and additional exercises to not only keep the lung function that Layla still has but to hopefully regain some that she has lost. Please pray for Layla to see progress from her efforts and to not become disheartened. The respiratory therapist (RT) that we are working with has gone above and beyond. They want Layla to use a cough assist machine daily. It is quite expensive; Layla’s RT reached out to a company that they’ve worked for in the past to see if they have financial assistance available. Yesterday, she relayed that the program no longer exists, but she is going to try another program and get back to me. They have also prescribed suction equipment for us to have on hand; Layla’s immune system is extremely weak and colds quickly turn into serious respiratory infections. This suction equipment will enable Justin and I to quickly extract mucus that Layla is unable to cough up, although it will be uncomfortable, it could be life-saving.

This upcoming week, Layla will see a third neurologist. Please pray for this doctor to have wisdom in the path we should take for Layla’s care. Thanks to a friend and fellow mother that I met while we were at the Spero Clinic in Arkansas, we learned of an additional test that we requested from Layla’s GI doctor. She will also have a Sitz marker test this week. To conclude this test, she will have two sets of x-rays and hopefully get some answers to her severe gastroparesis.

The following week, we have two more specialist appointments that we have been waiting a long time to see. She will see a complex care doctor, who we anticipate taking over as a “quarterback” for all of Layla’s care to organize and meet with all of the other doctors. In addition, she has a consultation with the sleep doctor. Please pray that they are able to schedule a sleep study quickly and create a plan to allow Layla to sleep soundly and for a full eight hours.

“Suffering makes us spiritually stronger in precisely the same way lifting heavy weights build muscles in the body builder.”               —Voddie Baucham

Although the neurologist had a great plan to have Layla admitted to hospital to undergo multiple tests, some requiring anesthesia, all at once and to better enable all of her specialists to collaborate on her care plan, they hospital denied the request. Therefore, we’re back to waiting. Waiting for openings. Waiting for tests. Waiting for answers. 

In our waiting, God has been unbelievably kind. We received clear results from Layla’s EEG, the episodes are not seizures. His kindness has also been demonstrated through the start of new medication, low dose naltrexone. This is supposed to help with pain. Layla has not noticed any difference in pain, but she has been able to sleep. Praise God. She’s been sleeping more soundly and for longer stretches of time. In addition, since she’s been able to sleep, the convulsion episodes have ceased. It has been six weeks since she’s had an episode. 

G.I. was astounded that Layla has maintained a healthy weight despite her limited diet. God truly has been gracious with this. 

Please praise God for his abundant kindness in giving Layla rest. Please pray that it continue to improve until she is regularly receiving a full night of sleep. Praise God with us that Layla’s weight has remained steady, and pray for her to be able to once again eat. Please pray for openings to become available for the many tests required and pray for us to be patient in the waiting. Please also pray for the many doctors who are overseeing her care to have wisdom in how best to proceed. 

“Praise the LORD! Praise God in his sanctuary; praise him in his mighty heavens! Praise him for his mighty deeds; praise him according to his excellent greatness!

Praise him with trumpet sound; praise him with lute and harp! Praise him with tambourine and dance; praise him with strings and pipe! Praise him with sounding cymbals; praise him with loud clashing cymbals! Let everything that has breath praise the LORD! Praise the LORD!”  

          Psalm 150

We are very impressed with the MDA doctors we saw today. We were not rushed and again had a doctor who is compassionate towards Layla’s condition and wants to know the root cause. In reviewing her genetic testing and nerve study, he is not convinced that the Emery-Dreifus Muscular Dystrophy is causing all of Layla’s issues. In fact, he wants to do further testing to know if it is significant in any way!

Furthermore, he wants an entire team to come together and run a multitude of tests. To accomplish this, he is contacting different departments to coordinate Layla being admitted to the hospital and having all tests done at that time. Ideally, he hopes to have this scheduled within a couple of weeks. From there, the doctors will collaborate and, hopefully, give us more direction. 

Please praise God for another caring and knowledgeable doctor. Please also praise God for his graciousness towards us. Thank you for your continued prayers for Layla’s healing and for her to not grow weary. Please also pray that the doctors are able to coordinate these tests promptly and to have clear answers and a plan moving forward. To God be all glory. 

“Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you.”

Since Friday, Layla has been wearing the Holter monitor that records her heart rhythm 24/7 for one week. We’re praying that this helps her doctors to understand the episodes that she’s having late at night. 

Thanks to Justin’s colleagues at the fire department and the Muscular Dystrophy Association, Layla is scheduled with the MD care team at Cook’s. Originally, they weren’t going to see her until October 31, but it has been moved to Thursday, August 15.  Our understanding is that this first appointment will be with a MD neurologist who will determine the specialists and treatments Layla needs. Every additional appointment will then include all the necessary specialists (all of them specializing in MD) in one visit. Praise God for this earlier appointment and for the work of everyone behind the scenes to help facilitate it. 

“Never be afraid to trust an unknown future to a known God.” —Corrie Ten Boom

Today, Layla saw the cardiologist and had both an EKG and an echo. The results of both of the tests are that’s the heart muscle is strong and the electrical activity was normal. Praise God that Layla’s heart is still strong. 

Today’s results don’t explain the episodes occurring late at night with her heart rate dropping into the 20’s and skyrocketing to 150’s nor her passing out up to 49 times in one night. The cardiologist thinks these episodes may be neurological. Please pray for us to get answers as to what is the cause of them and for them to subside. 

We have a follow up with neurology at the end of August. The pulmonologist is still scheduled for the end of October. In addition, we’ve had guys from Justin’s fire department reach out to the Muscular Dystrophy Association on our behalf. We’re expecting to hear back from them later this week. 

“Though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me”. —Psalm 23:4

Fear wants to creep in, but for believers, we have the assurance that the perfectly sovereign God, creator of the heavens and the earth will not leave us. He has foreordained each and every moment of our lives, and we can trust in His goodness. 

Yesterday was bittersweet. Layla had a good day. She spent time laughing and talking with each of us and played a video game with Ezra and some friends. However, the hard times hit before 10 pm. Praise God, Ezra was with her and immediately came to get us. Layla went from feeling pretty good, for her, to horrible within minutes. Her heart rate was around 150 bpm and her respirations were about 82/minute (normal is 10-20). 

To no avail, Justin and I tried to comfort and help her with her breathing. But things got worse. Her arms began having violent, painful tremors that she was unable to control. She had us holding her arms down when it happened because it was so painful. After no success, in helping her to breathe, we decided to take her to the ER. During the car ride, things continued to decline. She was confused and passed out four times. Everything was beyond our control, but we trusted the unknown to our known and merciful Lord. After several hours of being monitored in the ER, her body calmed down, and she could once again breathe. We were able to bring her home and Aslan remained on her bed with her all night; he has been a true gift of comfort. 

These episodes appear to be the result of the muscular dystrophy and are happening more frequently. Currently, we are awaiting appointments with specialists. The 16th of this month, she’s scheduled with cardiology and will have several tests run on the same day. The pulmonologist will also require more testing but is much more of a wait. Treating patients with Emery Dreifuss muscular dystrophy requires a specialist within the pulmonologist’s office, and the first available appointment isn’t until October 31. However, we are on a cancellation list and praying something comes available sooner. But, we will not fear and trust in the Lord as we wait. 

Please join us in praying for an appointment to become available sooner. Please pray for Layla to be able to breathe comfortably and for her heart to remain calm. Please pray that she not suffer any more of these tremors. Please pray for Justin and I to have wisdom, especially in trying to determine the best way to monitor Layla over night while still allowing her to feel like a 15 year old young lady. 

“This light momentary affliction is preparing for us an eternal weight of glory beyond all comparison” —2 Corinthians 4:17

“For the Christian, there can be joy in the midst of suffering, joy that transcends the pain of the moment. But we don't really understand the grounds for this joy in the house of mirth. We discover it in the house of mourning. It is in weeping that we learn to contemplate the goodness of God. It is in mourning that we discover the peace of God that passes understanding.” —R.C. Sproul

Saturday night, Layla has what appeared to be a really bad POTS episode. Praise God, Justin was home. He was able to help slow her breathing while I held her, and he watched over her the rest of the night monitoring her heart rate. She was so weak from the episode that she had barely been able to text for help and couldn’t speak. While he sat with her, she vomited. Him being there saved her life, because she didn’t have the strength to roll over and very easily could have aspirated, and she already has weak lungs and constant breathing difficulties. 

Layla’s genetic testing came back earlier than expected, and on Monday Layla’s neurologist (Dr. Christie) performed the EMG (electromyography test). Through the testing, two gene mutations that showed up were ruled to be insignificant. However, the third mutation seems to be confirmed through the EMG as of some form of significance. To what degree, we do not yet know. It is Emery-Dreifus Muscular Dystrophy. Again, we do not yet know what significance it is playing, but it seems to answer a lot of questions. 

In addition to the muscular skeletal system, this form of MD can also affect lungs, heart, GI, and vocal cords. Layla has been struggling with all of these areas and the POTS episodes have been happening more frequently. Dr. Christie is referring Layla to specialists in both cardiology and pulmonology (Scottish Rite does not have either of these departments). She’s also referring Layla to their orthopedic specialists; she thinks, but needs orthopedics to evaluate and confirm, that Layla may be a candidate to have surgery to lengthen some of her tendons to give pain relief and possibly regain some function. We’re still waiting to be scheduled for the swallow study. 

Dr. Christie has a colleague who is a genetic research doctor that she is reaching out to to further discuss Layla’s case. He is currently speaking at a conference, and it may take a while to get his input on everything. 

Right now, this is all we know. We have a lot more questions, but there aren’t any answers available, at least not yet. Please pray for us as we try to understand and explain this diagnosis to Layla. Please pray for wisdom, for us and her medical team. Please pray for Layla; her suffering has been great and this is a lot for a 15 year old to try and process. Please pray for us to not grow weary as we seek to provide for Layla’s needs and trust in God’s perfectly sovereign plan. Please also pray for God’s continued financial provision. 

Oh that man would understand that happiness does not depend on outward circumstances, but on the state of the heart.” —J. C. Ryle

Yesterday we had several visits at Scottish Rite in Dallas. First, the three of us met with their psychologist. They wanted this to happen before we met with neurology to ensure that their infant something that she needs and is missing. The lady we met with was lovely and worked hard to be able to hear Layla’s whispers as she retold her medical history for the past two and a half years. 

This was followed up with the neurology appointment. Again, another amazing doctor who was truly concerned about Layla’s health. The scans from Layla’s last visit were helpful in ruling some big things out: cerebralspinal fluid leak, chiari malformation, tethered cord, brain damage, and spinal damage were all negative. In addition, it showed that the curvature in her spine hasn’t worsened. Prior to seeing us, Dr. Christie (the neurologist) had spent time to review Layla’s entire medical history. We’ve learned that, unfortunately, this is not a common practice with many specialists. In addition, she was incredibly gentle with Layla. Touching her limbs that suffer from CRPS and allodynia are unavoidable, but Dr. Christie was as gentle as possible. She gave Layla an extensive physical exam and ordered several more tests. First, more bloodwork. A lot more. She wanted to test everything possible and make sure that nothing goes undetected. In addition, she ordered comprehensive genome testing. This will take about three months to get the results. Dr. Christie also ordered a nerve study, swallow test, and is looking into a sleep study. We’re hoping to have a call early next week to begin scheduling these. Dr. Christie also made sure that her nurse got us scheduled for late August, when all results should be back, to have a follow up visit. Both Dr. Christie and her nurse, Sarah, reiterated multiple times to call them immediately if we have any questions or anything changes. 

We left neurology to have labs drawn. The phlebotomist was able to get Layla in the first stick. Not an easy task. 

From there, we went to occupational therapy. The therapist, Grace, was also great to work with and was completely thorough. We were able to try an electric lift assist to aid in transporting Layla. At this time, however, Justin and I both agree that the one they have available for us will be more difficult on Layla to transport her this way and will continue to carry her. 

The entire team will meet to review Layla’s case and coordinate her care. All in all, it was a productive day, albeit arduous for Layla. We left home at 10:30 am and returned after 7:30pm. We’re thankful for our dear friend, Sarah Bryant, for taking Ezra after school and getting him to and from jujitsu practice yesterday. 

While we were at the hospital, Noah was at freshman orientation, enrolling for his first semester and receiving his dorm assignment. He and one of his roommates (there will be four of them in the suite) have been texting and seem to have a lot in common. 

Please thank God for his provision in getting us in with neurology so quickly and for the concern the medical team has shown for Layla. Please pray for their wisdom in evaluating test results and in how to proceed. Please pray for us to faithfully wait upon the Lord and to keep our hearts from growing weary. Please also pray for Layla; since the brutal stomach bug went through our home, Layla has been unable to eat pineapples (existing on only chickpea cereal, oat and honey bars, and Saltine crackers). Please also pray for Noah as he’s preparing to move out on his own. Pray that he wear our teaching as a graceful garland and adornment for his neck as he seeks to be a man of God. 

“Jesus endured His suffering in order to redeem His people. But those He redeemed are not thereby delivered from all pain and misery. Indeed, as we shall see, we His people are called to participate in His suffering.” —R. C. Sproul

Two weeks ago tomorrow, Layla celebrated her fifteenth birthday. Celebrating birthdays looks very different the past few years. No parties. No cake. But still filled with love and gratitude. Her dear friend, Lara, who sat with her for a few hours, gave thoughtful gifts, and just loved her well. Other friends from school came by and played a game with her. And she was able to open gifts with the rest of us. We’re thankful for the love of friends and family. 

The positive effects of the celiac plexus block have completely worn off. Layla is eating oat and honey bars for breakfast and dinner, 4 frozen pineapple chunks for lunch, and snacking on the chickpea cereal. That’s it. That’s all she can eat again. Not because she doesn’t want to, but the MALS, SMAS, and gastroparesis prevent it. Although nothing has changed with her liquid intake, we’re back to her requiring several IVs throughout the week.

Around 4am last Saturday, Layla was in the restroom and let me know her chest hurt. She looked pale. Her pulse was 40 beats/minute. She then passed out six times in a row. I was there to ensure she didn’t fall. Justin was at work, but I was able to get in touch with him to discuss her care. After having her feet elevated in bed, her vitals stabilized. She’s still having more bouts of dizziness than usual. Her migraines, although nowhere near the worst of her pain and suffering, have been bothering her more. Until a few days ago, she took a reprieve from her exercises because she struggled to even sit up. 

Last Thursday, we met with new orthopedic doctors at Scottish Rite Hospital in Dallas. Although they don’t treat CRPS, they do treat EDS and scoliosis. We met with both the specialist and his fellow. It was the longest visit we have ever had with doctors. They went over every detail of her medical history. Layla had more X-rays: several to measure her scoliosis from multiple angles, a couple of her right knee (the broken femoral growth plate is what began all of her health issues), and one of her hand to confirm she is finished growing. The doctors ordered a brain scan, MRI of her spine , and a follow up with their neurologist. This Friday is her imaging and May 17 is the follow up with neurology. 

Please pray for wisdom for her doctors overseeing her care and for Justin and I in knowing how best to proceed. Please pray for Layla to be able to endure the constant pain and suffering, to stay hydrated, and rest. Please also pray for her friend, Lara, that she also not grow weary and that her faith in God is also strengthened through this. 

“Never be afraid to trust an unknown future to a known God.” —Corrie Ten Boom

God is a good and holy God. He does not promise us that this life will be easy; quite the contrary. It will have troubles. But, rest assured those hardships are for our good and His glory. Although we do not know what Layla’s future holds, we do not that God holds her in His hands. He has chosen her and called her His own. 

God was gracious to give Layla a truly good day. The night before last, she was able to get a couple of hours of sleep! Praise God for giving her rest. She was able to comfort her cats after I bathed them, and she spent hours brushing them. For the first time in over a year, she wanted to listen to music, albeit softly. We spent the day talking, listening to music, and crafting. By evening, she was exhausted and needed a break, but by 11 pm, she was ready to finish her project. 

Praise God for the gift of rest, laughter, and music. She’s currently trying to get a little more sleep; please pray that she’s able to build on the rest that she had and be able to sleep well. 

Earlier this week, we took Layla to Southlake (it was a difficult drive) to visit a place offering Hippo therapy. Doreen (she runs the organization) was incredibly kind and gentle with Layla. While touring the facility, Layla was able to pet some horses and meet their largest horse, Hank. She loves big animals. The bigger the better. Big horses. Big cats. As long as they’re BIG. She was also able to try to “ride on a Miracolt. It was incredibly difficult. It took Justin, Doreen, and myself to support Layla. It was obvious that Layla is not strong enough to use Hippo therapy at this time. But, Doreen reached out to me later that same evening to share the information about Miracolt. They’re available for purchase (over $9,000), but in Texas there’s a rental option. We’ve reached out to the company, but have not heard back. Please pray that there is a rental available that we may utilize this therapy at home in small increments throughout the day allowing us to build towards the Hippo therapy. For those of you that don’t personally know Layla, she LOVES horses. Layla is in constant extreme pain and riding the Miracolt did increase her pain. However, as we’ve witnessed with her working through tears before, she desires to get better and will do the necessary hard things to work towards that goal. 

Nutrition is continuing to slowly improve. Layla was able to eat 4 frozen pineapple chunks for a meal yesterday! Today, we’re going to try and introduce a piece of frozen mango. We tried an amino acid drink, but she was unable to drink it. Dr. , her nutritionist from Florida, has been amazing and continues to check in on her. We’ll be speaking with him again later today. Please thank God for the improvements in Layla being able to eat some foods. Please pray that she be able to be able to find more foods that she can successfully eat. Please also pray for improvement with the gastroparesis as her digestive system is still not functioning. 

How Firm a Foundation

“How firm a foundation, you saints of the Lord, is laid for your faith in his excellent Word! What more can he say than to you he has said, to you who for refuge to Jesus have fled?

Fear not, I am with you, O be not dismayed; for I am your God, and will still give you aid;

I'll strengthen you, help you, and cause you to stand, upheld by my righteous, omnipotent hand.

When through the deep waters I call you to go, the rivers of sorrow shall not overflow; for I will be with you, your troubles to bless, and sanctify to you your deepest distress.

When through fiery trials your pathway shall lie, my grace, all-sufficient, shall be your supply; the flame shall not hurt you; I only design your dross to consume and your gold to refine.

E'en down to old age all my people shall prove my sovereign, eternal, unchangeable love; and when hoary hairs shall their temples adorn, like lambs they shall still in my be borne.

The soul that on Jesus has leaned for repose, I will not, I will not desert to his foes; that soul, though all should endeavor to shake, I'll never, no never, no never forsake."

        —Author Unknown

This hymn has been a long time favorite of mine. A friend, Melissa Ward, gifted me a book highlighting this beloved hymn and God’s grace in our suffering and is such a great encouragement of God’s sovereignly using each trial to refine us. 

We’re ten days post Layla’s celiac plexus block. The surgeon who performed the procedure did tell us that there could be continued improvements for up to two weeks afterwards. Although she has not had any pain relief, there have been improvements Significant improvements for her. She has been eating 8-10 frozen blueberries each day. Yesterday, she ate a single frozen pineapple piece, and today she ate two for breakfast. She ate 4 crackers on two separate occasions. Not only has she been able to swallow the food, but she’s been able to keep it down. Praise God! Eating these things is difficult and can take up to an hour, but it’s progress. She still continues to eat the chick pea cereal which provides her protein needs. 

In addition to eating, she has made remarkable improvements in drinking. Layla was drinking about 50 oz of water a day. It was a struggle to get there, and she was requiring an IV 2-3 times per week. Since the block, she has not had the need for an IV! She’s been able to drink at least 30 oz of plain water and another 64 oz with supplements that her nutritionist had prescribed, but she was previously unable to swallow them. 

Sleep has also positively changed. Whereas she was getting 30-45 minutes a night before the block, she’s been averaging sleeping an hour and a half a night now. Her body desperately needs deep sleep to be able to heal, but we thank God for every little bit she gets. Please continue to pray that she be able to sleep more each and every night. 

We met with Layla’s vascular surgeon, and God has answered our prayer. We have a very clear answer that the MALS surgery is not an option for her at this time. Due to her overall health, the surgeon does not feel confident that she could survive the surgery. He believes that if she was able to come through it, that the possibility of her being on a ventilator is extremely high. Praise God for giving us a clear answer. Her surgeon believes that it would be a benefit to her down the road if she is stronger and in better health. 

We’re keeping in constant contact with her doctor/nutritionist and texting him updates every three days. However, if Layla does not continue making improvements in eating, she will need to get a feeding tube. Please pray that she continue to improve with being able to swallow foods and keep them down. 

Despite all that Layla has endured over the last two years, she continues to have a great attitude. Her faith in God has been refined and deepened. She lives at a constant 9 out of 10 pain; yet, she never complains. Praise God for the good fruit that has come from her suffering. “When through fiery trials your pathway shall lie, my grace, all-sufficient, shall be your supply; the flame shall not hurt you; I only design your dross to consume and your gold to refine.”

Six frozen blueberries! Layla was just able to eat 6 frozen blueberries and did not have an increase in pain! It’s been months since she’s been able to eat anything other than the chick pea cereal.

“I will extol you, my God and King,
and bless your name forever and ever.
Every day I will bless you and praise your name forever and ever. Great is the LORD, and greatly to be praised, and his greatness is unsearchable. One generation shall commend your works to another, and shall declare your mighty acts. On the glorious splendor of your majesty, and on your wondrous works, I will meditate. They shall speak of the might of your awesome deeds, and I will declare your greatness. They shall pour forth the fame of your abundant goodness and shall sing aloud of your righteousness.” Psalm 145:1-7

We declare the Lord’s goodness. The diagnostic procedure that Layla was required to have done came with a giant price tag. One that was well beyond our means to provide. Yet God provided through Debra Ciccarelli. After months of searching for a doctor to perform a celiac plexus block for Layla, today was the day. We arrived at the hospital for our appointment at 6:30 am to find that it had been canceled by a different department that wanted to treat Layla, but couldn’t see her until May. Long story short, the nurse we spoke with was kind and listened to us as we pleaded for Layla to be put back into the surgery schedule for today. God appointed the right person as she advocated for Layla, and we were able to get the procedure done this afternoon. Great is the Lord. 

Waking from anesthesia was rough for Layla. It was as though she forgot how much pain she’s always in. She was in tears and confused. She’s calm and settled back in her own bed now exhausted from the long day and still in pain, we pray that she’s able to rest tonight. 

We will speak with her other surgeon (for the MALS and SMAS) later this week to update him about today’s procedure. Today’s surgeon said we should know in a couple of days to weeks as to whether or not she’ll feel any relief or it could cause her more pain. We pray that as a diagnostic tool this gives clear direction as to how to further Layla’s care and that she gets some relief and is strengthened by being able to eat, drink, and rest. We pray also, that through this trial with its hills and valleys, that above all, the Lord be magnified, and that one generation shall commend His works to another, and shall declare His mighty acts.

“The steadfast love of the LORD never ceases; his mercies never come to an end; they are new every morning;
great is your faithfulness. ‘The LORD is my portion,’ says my soul, ‘therefore I will hope in him.’”  Lamentations 3:22-24

Yet again, the Lord has provided for our physical needs. Layla is scheduled at Cook’s through Interventional Radiology on February 12 for their first procedure of the morning. Thank you for continuing to lift Layla up to our merciful Lord in prayer. Please pray that the Lord be glorified through these circumstances. Please also pray for Layla throughout the procedure, her recovery, and that the procedure give definitive answers. 

“Oh give thanks to the LORD; call upon his name; make known his deeds among the peoples! Sing to him, sing praises to him;
tell of all his wondrous works! Glory in his holy name; let the hearts of those who seek the LORD rejoice! Seek the LORD and his strength; seek his presence continually.” 1 Chronicles 16:8-11

Today, my oldest friend, Camille Clary, reached out to give me information to a Children’s hospital near her. The woman I spoke with at the hospital was incredibly helpful and researched who she thought would be able to see Layla to perform a celiac plexus block. She found that were needed a sub department of radiology. Although we’ve already spoken to radiology at the local children’s hospitals, we have not specifically spoken to interventional radiology (IR). I thought I would try the local hospitals again, now knowing a different office to try. The gentleman in the IR Dept. at Cooks was an incredible resource. He believes that they may be able to perform the celiac plexus block. Our vascular surgeon sent over the orders immediately, and we should get a call back tomorrow from the gentleman that was helping me after he speaks with the doctor. Praise God for providing direction and that the block may be able to be performed near our home. 

In addition, Layla received an unexpected and generous gift. Last week, Justin and I were looking at some online to get an idea of the cost to try and provide a little more independence back. They were out of our budget for now, and we didn’t mention it to anyone. However, Melissa Ward on behalf of a donor who wishes to remain anonymous to offer an electric wheelchair to Layla. God is good! We appreciate the work that he is doing through others to bless us. Please continue to praise God for his kindness and provision. 

The chair will require some practice and strength training from Layla as it is necessary for her to sit up taller and to hold her legs in. But this is a great way for her to practice those things and to be able to have some freedom. Today, she was able to practice with it a little. Please pray that she be able to gain strength through using this electric chair. 

“You either believe God knows what he’s doing, or you believe he doesn’t. You either believe he’s worth trusting, or you say he’s not.” —Elisabeth Elliot

We continue to trust in God, even when there seems to be no way. There isn’t much to update as far as changes go for Layla’s overall health. She is still getting around an hour of sleep a day, only eating the chick pea cereal, struggling with hydration, and in constant pain.  

December 11, 2023, Dr. Charles West the vascular surgeon Layla has been seeing for MALS ordered her to have a procedure called a celiac plexus block. This serves dual purposes. First, it should give pain relief in her upper abdomen (anywhere from a few hours to months) and possibly allow her to eat again. Second, it’s a diagnostic tool to know if the MALS surgery would give her relief. It is still undetermined whether or not Dr. West feels that Layla is strong enough to survive the extensive open abdominal surgery MALS requires (she isn’t a candidate for laparoscopic). Having this block done would aid in knowing whether the risk would be worth the benefit. 

The digestive specialist, Dr. Ranzan, that Dr. West normally uses for the celiac plexus block won’t take Layla as a patient because she isn’t 18. We’ve called multiple doctors trying to find anyone who will take her. We even had a GI doctor from Children’s in Plano tell us they could do the procedure. Over $400, a long drive for Layla, and an unproductive two hour appointment later, we learned that they actually have never heard of it. They referred us to their pain management for the procedure, but we again were told they couldn’t do it. We’ve reached out to both GI and pain management through Cook Children’s with no success. As a last resort, we reached out to Drew. Ranzan’s office directly and pleaded Layla’s case asking him to personally review her file to possibly make an exception. 

Please pray for God to provide a doctor that will perform a celiac plexus block for Layla. Pray for wisdom in knowing the correct path to take for her care. Please continue to pray for her to get sleep. 

“There is strength in Christ not only to sanctify and save us, but strength to support us under our burdens and afflictions.” —Jeremiah Burroughs

Today, we had a follow up visit with Dr. West, a vascular surgeon at Harris in downtown Fort Worth. He reviewed the dye contrast MRI that Layla had done last week. Layla’s imaging was unique. It showed compression on the messentric artery and a hook in her celiac artery that the surgeon has never seen before. It also shows that the gastroparesis is still causing some blockage with delayed emptying. This alone can cause abdominal pain and other health concerns. 

At this time, he doesn’t know if surgery will fix the problem. Dr. West is referring Layla’s case to be reviewed by another team of doctors. If they deem that surgery is the best course of action, he will want her further evaluated to determine if she is strong enough to undergo the surgery. 

In addition, she needs to have a celiac plexus block, which is pain medication injected to stop the nerve pain in her upper abdomen. He’s also ordering an angiogram and wants to see her again in two months. 

Thank you for your continued prayers for Layla. She is still sleeping less than an hour a day and struggling with food. This week, she’s received two IVs that included magnesium. We’re praying that this aids her in getting rest. Please pray for her digestive system to begin functioning properly again and for the doctors to have wisdom in the best course of action for Layla. 

“My confidence in the future rests in my confidence in the God who controls history.”

  —R. C. Sproul

Layla is still struggling to rest and averaging 30 minutes a night with no naps during the day. The only food that she’s capable of eating is still the chickpea cereal; praise the Lord that there is a food that she can eat.

Although she has been suffering for almost two years now, she has confidence in God’s sovereignty over all things. Praise God for the faith that he has given her. 

Although the CRPS has taken her ability to walk and causes a great deal of pain, her abdominal pain is still the chief complaint. A couple of weeks ago she had an aortic ultrasound with Doppler to check if she is also suffering from MALS. The radiologist who read the test ruled out MALS. However, Layla is physically incapable of taking a deep breath; she does daily exercises with a breathing device to try and regain the ability to breathe, but we have yet to see any progress. Due to this, the reading of the imaging may not be correct. November 28, she is scheduled with a pediatric vascular surgeon who wants to evaluate her and read her imaging himself. 

This is an answer to prayer! It’s been months that we have been trying to get an appointment with somebody who specializes in MALS. Please pray that we get answers on how to best continue her care and enable her to eat again. 

A few weeks ago, she also saw an allergy and asthma specialist who confirmed that she is still suffering from one of the markers of MCAS. The SAAT treatments she had in Arkansas were successful in relieving her body of the other for markers. Please pray for her to continue to heal from this as well. 

Psalm 147:1-11

“Praise the LORD! For it is good to sing praises to our God; for it is pleasant, and a song of praise is fitting. The LORD builds up Jerusalem; he gathers the outcasts of Israel. He heals the brokenhearted and binds up their wounds. He determines the number of the stars; he gives to all of them their names. Great is our Lord, and abundant in power; his understanding is beyond measure. The LORD lifts up the humble; he casts the wicked to the ground. Sing to the LORD with thanksgiving; make melody to our God on the lyre! He covers the heavens with clouds; he prepares rain for the earth; he makes grass grow on the hills. He gives to the beasts their food, and to the young ravens that cry. His delight is not in the strength of the horse, nor his pleasure in the legs of a man, but the LORD takes pleasure in those who fear him, in those who hope in his steadfast love.”

This morning began with Layla not being able to have the ultrasound. The one required to check for MALS requires different equipment than the facility we were scheduled with has available. However, our doctor called multiple facilities and rescheduled Layla for Monday in Fort Worth. 

God provided a with the specialist for MCAS. Originally, we were told they will not see anyone under 18, but they reviewed her case and decided to see her. She was scheduled for February, but there was a cancellation for tomorrow that we were able to take. 

I spoke with the office of the doctor who specializes EDS/MALS again today. This time, the reception took down a brief history of Layla’s health struggles to send to the doctor for him to personally review whether he’ll take her case despite only being fourteen. 

Please praise God for all of the ways that He has continued to open doors for Layla to receive the care that she needs. Please pray that the EDS/MALS doctors take her case and got there to be an immediate opening (they’re currently scheduling for the end of March).

“If the Lord makes us wait, let us do so with our whole hearts; for blessed are all they that wait for Him. He is worth waiting for. The waiting itself is beneficial to us: it tries faith, exercises patience, trains submission, and endears the blessing when it comes.”

   —Charles Spurgeon

We’re in a season of waiting. Waiting for answers. Waiting for doctor visits. Waiting for healing. 

Janice with InterX therapy in Dallas has been instrumental in directing us to various doctors for further testing. She connected us with the doctor in Florida (Dr. ) who is treating Layla’s gene mutation. We recently had a follow up with him. He readjusted the timing of some of her supplements to try and help her get more rest. Most of the time, she’s still only getting about an hour of sleep within a 24-hour period. Sometimes it’s as little as 25 minutes. Occasionally as much as an hour and 50 minutes. Dr. anticipates it will be about 6 months to see benefits of the treatments. 

Janice has directed us to two other doctors as well. It’s suspected that much of her stomach pain and nausea are being caused from median arcuate ligament syndrome (MALS). This is a type of vascular compression that occurs when a ligament in the lower part of your chest (median arcuate) sits lower than normal and presses against the main blood vessel that supplies blood to the stomach, liver and other organs. This is usually the result of EDS. Layla is scheduled for an ultrasound on Tuesday. We’re still awaiting an appointment with an EDS/MALS specialist. There are two separate doctors in Dallas that we’re trying to get in with. However, neither takes a 14 year old, so we’re waiting for special approval for them to take her. If It is confirmed that she has MALS, it would require surgery to correct it. Surgery with CRPS adds another layer of complication.

Thanks to Janice, we also are scheduled for a visit with an immunologist who specializes in treating mast cell activation syndrome (this isn’t until February of next year, but we’re on a cancellation list). Although Layla has no longer been suffering from the horrific hives of MCAS, it is possible that she still is having severe allergic reactions that may be causing the aversion to foods. Layla is struggling with—but continuing to eat—frozen blueberries and successfully eating the chick pea cereal. 

In addition, we’ve been able to wean Layla off of the liquid IV. Although they were instrumental in keeping her POTS symptoms under control, she hated them and they are high in sugar. We’ve transitioned into using a homeopathic rehydrate that seems to be successful in keeping the POTS symptoms in check without causing additional stomach upset. 

Please continue to pray for Layla to get rest. Please also pray that the MALS/EDS doctors will make an exception and see her despite her age. Please pray that there is a cancellation with the immunologist and that Layla is able to be seen much sooner. Thank you for lifting up Layla and our family to our God and gracious God as we continue to wait. 

I love the LORD, because he has heard
my voice and my pleas for mercy. Because he inclined his ear to me,
therefore I will call on him as long as I live. The snares of death encompassed me; the pangs of Sheol laid hold on me;
I suffered distress and anguish. Then I called on the name of the LORD:
“O LORD, I pray, deliver my soul!Gracious is the LORD, and righteous;
our God is merciful. The LORD preserves the simple; when I was brought low, he saved me. Return, O my soul, to your rest; for the LORD has dealt bountifully with you.

  —Psalm 116:1-7

The Lord truly has been good to us. Layla has been taking the new supplements for a week now. Her stomach pain increased, so we’re spreading them throughout the day more. Thus far, it seems to be helping. 

We tried to reintroduce sweet potatoes, but it caused severe pain and acid reflux. We’ll give it a few days and try again. Please thank God that she has consistently been able to eat the chick pea cereal to consume some protein and that she’s been able to have the frozen blueberries got such a long time. Please also pray for her stomach pain to lessen and for Layla to be able to be around food smells without getting sick and to be able to begin reintroducing foods into her diet. 

Sleep last week was almost nonexistent. One night, she slept a total of ten minutes. BUT last night was a huge improvement. Last night, Layla slept 3 1/2 hours! Please praise God for his next of sleep and pray that her sleep continues to improve. 

“Nothing can hurt God’s people except and until God permits. We are all immortal till our work is done. To realize that nothing happens in this world except by the eternal counsels of our Father and according to His eternal plans, is one grand secret of living a calm, peaceful, and contented life.”

 —J.C. Ryle

Since coming home mid July, Layla’s sleep has become almost nonexistent. Most nights she’s getting about one hour of broken up sleep. She’s exhausted. There’s nothing in the tank, yet she’s trusting God and persevering. She’s doing her exercises. She’s struggling through and trying to eat her blueberries. She’s trying to interact with others. But there’s nothing to give. We tried to attend one class at school, but it was too much for her. She’s attending church with ear plugs and headphones because the sound intensifies her pain. God has been incredibly kind to bless her with truly amazing friends. Friends who will sit with her in silence, and friends who will do all of the talking (whispering) when she can’t carry on a conversation. 

One of the many treatments that Layla received at Spero was called NIN (non invasive Neurostimulation) through a device called InterX. While calling to get an attachment for her device, we learned that they have a clinic offering treatment. Twice a week, Layla now goes to InterX in Dallas. Layla’s therapist, Janice is amazing. Everyone at the office has been great, but Janice has gone above and beyond. She called me one evening almost in tears after she’d been praying for Layla because she had a doctor, Dr. ***, she wanted to recommend to us and couldn’t wait until our next appointment. 

We met via zoom with Dr. ***, and he ordered some further testing, including genetic screening. This evening, Justin, Layla, and I had the follow up zoom call to review the results. 

Layla is suffering from adrenal fatigue and is significantly lacking neurotransmitters. Basically her brain is lacking the ability to communicate with her body. This would explain why all the treatments she has received have not had more of a positive effect. Dr. *** has prescribed a couple of supplements for this. She also has a significant genetic mutation. Only 5% of the population suffers from this homozygous wild mutation and Layla is one of them. Left untreated this also puts her at high risk of ******, heart disease, and heart failure. Although this seems like bad news, it’s quite the contrary. 

The body, with supplements, can work around the genetic defect. In addition, this is also the likely cause of the health issues for the rest of the kids, and they will all be starting the supplement and should see significant improvements in their health. One of the first improvements we expect to see is in Layla’s sleep. 

Please praise God for providing us with this information and plan for Layla (and our other three kids). 

“Contentment is a deep satisfaction with the will of God. Contentment enables me and you to rest quietly in his hands, knowing we are safe, even (and especially) in the midst of trouble” (Nancy Wilson).

Contentment is not just waiting to live our lives again, but living for God’s glory through the hardships. Layla and I are not home and now we (and the rest of our family) get to live our lives again. We’ve been living. Life looks differently than we ever envisioned, but we know that this is God’s will. 

Twelve years ago, when Ezra was an infant and there was concern over whether or not he would be blind due to his coloboma, my friend, Shelly Atwood, preached to me with two simple words, “and then?” If my child was blind, “and then?” Then God would have used the lack of vision for Ezra’s good and for God’s glory. I found contentment in the uncertainty because I could trust in God’s sovereignty. Although Ezra’s vision was not impacted by the coloboma, my heart was. And Shelly’s words have rang in my head many times, “and then?”

Two years ago, Layla went from being an athletic eleven year old to wheel chair bound and non ambulatory within a matter of several months. “And then?” Well, God proved himself faithful to Layla and us. He has never left us nor forsaken us. 

This past Sunday was going to be our first Sunday back at our own church. However, Saturday night Noah passed out in the shower, resulting in a pretty severe concussion. On the way to the E.R., he passed out several more times. We missed church, and he missed the first couple days of his senior year, yet we find contentment in the difficult circumstances. It appears that Noah is also dealing with POTS. And then? We trust in our loving God to use this for His glory. 

I’ve stepped away from teaching to care for Layla. And then? We trust God to provide for our needs. 

We left Spero after exhausting all resources and are continuing as many treatments as we can at home. And then? God provided a facility in Dallas that offers one of the treatments that she received while at Spero. The flexibility in my schedule from not teaching is allowing me to take her there twice a week. 

This week, Layla’s energy levels tanked—to the point that it was a challenge for her to hold her head up—and everything has been a struggle. And then? We patiently trust in God’s timing and find contentment in the blessings he’s graciously provided us. 

Please continue to pray for her remission. Pray that Layla—and the rest of us—trust in God’s will as we wait. Praise God for giving us contentment, and pray for us to not grow weary. Please pray for God to provide financially as the clinic in Dallas is cash pay only. Please also pray for Noah’s health, and praise God that he is walking a little better every day. 

“Even if the budget is never balanced, even if the stock market crashes, even if food prices skyrocket, even if my child never recovers from her illness, even if I lose my job, and even if we lose our home—yet will I rejoice in the God of my salvation.” 

—R.C. Sproul

November 2021 a simple playground accident resulted in an unexpected trial for Layla and our family. Her broken leg triggered CRPS (as her health rapidly declined, we learned she also suffered from POTS, EDS, MCAS, Lyme’s Disease, Hashimotos, and gastroperisis). In October 2023, our family began living in two separate states as we sought specialized treatment for Layla at the Spero clinic in Fayetteville, Arkansas. Through God’s provision of generous gifts from friends, family, and complete strangers as well as the equity from our home, we have been able to continue treatments here these past nine months. 

Layla has come a long way. When we arrived here, she was on 3,000mg of Gabapentin and copious amounts of Tylenol and ibuprofen, unable to eat anything, needed weekly IV’s, passed out frequently, suffered from tachycardia, unable to sleep, unable to ride in a car for even five minutes without being in tears and dislocating multiple joints, could not bear to be around any noises, had extreme light sensitivity, and was unable to be touched. God has gifted Dr. Katinka and the amazing staff at Spero with an incredible understanding of CRPS. And through her treatments here, she’s titrated off of all medications, eats several fruits and a chickpea cereal, stays hydrated, hasn’t passed out in months, tachycardia is only an occasional problem (but with the equipment and training we’ve received, we’re able to bring her heart rate down), until the issue with her tibia last week, she’s been sleeping about seven hours a night, most car rides don’t cause pain flares, can listen to music and converse with others, no longer wears sunglasses inside, and I’m able to hug her again. 

She is still suffering and has a long road to remission, but we get to see Layla. She makes us cry from laughing so hard. She has become quite skilled at getting us to adopt cats She does crafts again. She has maintained her unwavering trust in the Lord. And she humbles us with her teasing. 

We have no guarantee that she will walk, be able to speak in more than a whisper, be able to sit at the dinner table with our family, or attend school regularly. Yet we will praise the Lord for His plans are greater than ours. We will continue to glorify Him through our struggles; our “primary purpose is to glorify God and to enjoy Him forever.” This isn’t just when things are smooth sailing, but through the struggles of life as well. 

The time has come for us to take Layla home. We will continue to implement the protocols we’ve learned here at Spero while at home. We will continue praying for her to reach remission: to be pain free with a fully functioning body. We have been blessed by the friendships we’ve built here in Arkansas and will continue praying for our fellow CRPS warriors and their families as well as all the staff here at Spero. We’re grateful for the time we have been able to be here for Layla’s treatments. 

“For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us” (Romans 8:28).

“Blessed be the God and Father of our Lord Jesus Christ! According to his great mercy, he has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead, to an inheritance that is imperishable, undefiled, and unfading, kept in heaven for you, who by God’s power are being guarded through faith for a salvation ready to be revealed in the last time. In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, so that the tested genuineness of your faith—more precious than gold that perishes though it is tested by fire—may be found to result in praise and glory and honor at the revelation of Jesus Christ. Though you have not seen him, you love him. Though you do not now see him, you believe in him and rejoice with joy that is inexpressible and filled with glory, obtaining the outcome of your faith, the salvation of your souls.” 1 Peter 1:3-12. 

We have been grieved by trials throughout the past couple of years with Layla’s suffering through the intense pain of CRPS, but we know that through these temporary difficulties we face serve to glorify God and to refine our faith. This week has proved very difficult for Layla. While straightening her right knee in NMR on Monday, her right knee popped. A loud strange pop. She was immediately in tears and her leg curled up tighter than normal. Due to the holiday, there were no treatments on Tuesday, and I didn’t want to push her since her pain was so intense. Instead, we used her machines at the apartment to help with swelling. On Wednesday, she saw Dr. H who found that the head of Layla’s tibia was out of place and really far forward. She adjusted it with the actuator rather than the drop block because the tibia wouldn’t allow Layla’s leg to straighten. Her knee pain is still intense, and it even surpasses her gastroparesis pain. Next week, she’ll have two Dr. H appointments to try and get the tibia back where it belongs and to keep it there. Please pray for her pain to subside and the tibia to stay in its correct place. Please also pray for her not to give into fear or anxiety of this happening again and refrain from giving her best in every treatment. “The Christian who worries is really thinking, God, I know you mean well by what you say, but I’m not sure you can pull it off. Anxiety is blatant distrust of the power and love of God” (John McArthur).

Please also pray for her to not be discouraged. In addition to this setback, her left foot has become worse. It is locking out straight (she looks like she’s wearing a pointe shoe on it all the time). Praise God, she still has the ability to control her toes on her left foot. However, she cannot dorsiflex it at all. Pray for her to trust in God’s goodness and to remember that we do all things for His glory. 

Please also pray for her to be able to sleep despite this increase in her pain. Since Monday, she’s back to only getting 2-3 broken hours of sleep. In addition to lack of sleep, she’s also been experiencing more of the POTS symptoms this week. While in bed today, her heart rate was in the high 120’s. Please pray for her heart rate to calm down. 

Despite these things, she has still done her tutoring with Noah this week. They’ve needed to break it into smaller sections for her to focus, but she’s done it. And through the pain today, she still took care of her responsibilities and brushed Caspian and Aslan so I could give them baths. In case you are wondering, no, Aslan was not a fan. Not even a little. That three month old kitten is stronger than I expected. But, I won this round. 

Although Layla didn’t progress as we hoped this week, Noah has made huge improvements. He is now walking! Not the Penguin shuffle that he’s been doing since being off crutches, but actually walking by bending his ankles and knees. It’s still painful and requires concentration, but he’s moving in the right direction. Due to the EDS, he will always have connective tissue issues and building muscle strength to compensate is extremely important. Please praise God for Noah’s success and pray for him to receive complete restoration of his legs and feet. 

“If I hope in anything or anyone less than One who has power over suffering and, ultimately, death, I am doomed to final disappointment. Suffering will drive me to hopelessness. What character I have will disintegrate. It is the hope of Christ that makes it possible for us to persevere in times of tribulation and distress. We have an anchor for our souls that rests in the One who has gone before us and conquered.”  

—R.C. Sproul

We are thankful for the work of Christ; we have a high priest who sympathizes with our weaknesses and sustains us. God has been gracious to us and when the temptation to grumble enters into our minds, He faithfully reminds us of His goodness turning us instead to gratefulness. 

This week in NMR, Layla has worked with Tori and Bianca. Although she still isn’t able to stand, we are seeing other improvements. She was able to get her right leg to straighten with lower stim (42) this week. Layla is able to hold herself upright while sitting for longer periods of time. She’s holding her head almost straight and working on chewing with the right side of her mouth. No longer is Layla wearing sunglasses inside. Consistently, Layla is drinking three liquid IV’s every day; some days she’s drinking plain water in addition to this. She hasn’t needed to get IV fluids in several wells now! She’s not dislocating her ribs, shoulders, elbows, wrists, or fingers as frequently. She’s trying new foods; we didn’t have success with most of them, but she tried. Although Layla is still battling Lyme’s disease, she’s been able to increase the medication for it from 3 drops a day to 6 drops per day without increasing stomach pain. She’s able to attend a local church and then watch our own church’s service online. While picking her up to transport her, she’s supporting herself with her arms more. She’s getting close to being able to roll over on her own. Layla’s core has grown stronger, and she’s excited that she can feel her abs. 

Focusing has been difficult, but Noah has begun tutoring Layla in literature. Currently, they’re working through Gilgamesh. He’s enjoying doing research for more background information and is reading with her and asking her thought provoking questions. It exhausts her, but she’s doing it for God’s glory to the best of her abilities. 

Justin was able to be here this past week and see Layla’s improvements. We missed having Brianna with us, but enjoyed having the five of us together. We celebrated Father’s Day (a day late), Justin’s birthday, and our 25th anniversary (a few days early).  

While Justin was here, Layla convinced us that it was time for another kitten for Caspian to play with because the Ragdoll breed requires a companion. So, we now have a new addition to the family, Aslan. Layla has been working hard to carefully introduce her cats and to ensure that Caspian doesn’t feel neglected. 

Please thank God for the blessing the cats are by providing her with the necessity to care for them, even when she’s having a difficult day. Please continue to pray for her stomach and for her to regain the ability to eat without pain. Please pray for her to continue to grow stronger and to regain the ability to control her feet and legs on her own. Please thank God for the improvements that we’re seeing, and ask Him to help her recognize the small victories each and every day. Please continue to pray for Layla’s endurance and for her to not grow weary. 

“For we do not have a high priest who is unable to sympathize with our weaknesses, but one who in every respect has been tempted as we are, yet without sin. Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need” (Hebrews 4:15-16).

“Patience means living out the belief that God orders everything for the spiritual good of His children.” —J. I. Packer

We came back to Arkansas earlier than we originally planned for Layla to be a part of NMR training, which went really well. Brianna left to to go to Mexico with grandparents and Justin drove up here to have a few extra days with us. Lord willing, the plan is for boys and Kodi to be staying here for most of the summer (Brianna will be working back home). In addition to having time with them, this will also allow Noah to be seen by Dr. H regularly and to get some NMR sessions in as well. Noah has been so sweet to sit with Layla and do scrapbooking (not his cup of tea by any means, but he loves Layla). Ezra and Layla coordinated which Build-a-Bears he would bring with him so they had ones that would work together. Each day they figure out which ones to take to clinic. 

It’s been a slow week of progress. This week the focus has been on her face, throat/neck, and abs. The thought process behind this is that she is not using the muscles in the right side of her face. I had not noticed until it was pointed out that her smile droops on the right side. She needs to strengthen and use those muscles more to help the connection with her right leg. It’s believed that this will also help her get her voice back and help with her eating. Each day, two therapist would double team her. Layla takes whatever is thrown at her. Any treatment no matter how intense she always says, “I’m fine” And does what’s asked of her to the best of her ability. Even if she’s had tears falling, she still whispers, “I’m fine” And pushes through the pain. Never once has she asked to stop or to take a break. She just does the work. 

Yesterday, the boys helped me with her PT. It’s a joy to see them serving her. During her the ab exercises she only got the ARP dial up to 84.6 (if you’ve used it you know it really isn’t ONLY). But on her own, she added extra time and cranked it to 100 to do one more. This morning she was excited to show me that she can once again feel her abs!!! Please pray that she continue to see success from her hard work. 

One of the activities to help Noah with the EDS pain/function is to get into the pool and move his feet and legs around. Yesterday evening, Layla wanted to sit and watch the boys and I play volleyball in the water. She was able to be there for 30 minutes before wanting to go back to the apartment, but that’s huge that she wanted to go! Please pray for her to be able to participate in more and more activities. 

This upcoming week, Justin will get to be here will us for several days. We’ll miss having Brianna here, but we’re grateful for the time that God blesses us to be together. This journey has been much longer and slower than anticipated. But we know that it is all for God’s glory. 

“Intercession is the hardest work in the world--the giving of one's self, time, strength, energy, and attention to the needs of others in a way that no one but God sees, no one but God will do anything about, and no one but God will ever reward you for." 

  —Elisabeth Elliot

Thank you for faithfully praying for Layla. Two weeks ago, she was able to make a trip home for Brianna’s graduation. Layla still prefers to lie down with her abdomen stretched out, so sitting slightly reclined in a vehicle for 6 1/2 hours was expected to be a challenge. But God. God was gracious and the travel—although not without discomfort—was much better than anticipated. Caspian did his job well and slept curled up on Layla’s lap most of the drive. 

There are no words to describe what it was like to be home. All six of us together. It makes me pause to ponder if being home here on earth, full of all of its pains and sorrows and our body of flesh can be so amazing, how much greater will it be for God’s elect to be united with Him in Heaven? What a day that will be! In the meantime, we will worship Him and enjoy the blessings He has given us. One of them being laughter. We laughed so much together. Played games. Had family worship in person (we’re thankful for technology that allows us to join together from a distance, but it isn’t the same). Visited with dear friends. Layla put the ARP on everyone brave enough to try. I will say she went much easier on the dial with her friends than she did her siblings. 

We were able to attend church on Sunday. Layla made the drive there, sat through service, and made it back home. Again, I have no words. But we were blessed to be there worshiping with our brothers and sisters in Christ. Praying together. Confessing our sins together. Reading Scripture. Singing Psalms Sharing in the Lord’s Supper. Layla is still unable to partake due to her gastroparesis and allergies. Please continue to pray for her healing and ability to once again Feast at the Lord’s table. Thank you to our church family for being so faithful to lift up Layla and our family in prayer. Thank you for caring for our family so well.

Layla was able to not only attend church but later in the week went to Brianna’s graduation and the reception. We were there early and stayed late. Layla made it through. Her dearest friend, Lara Folegatti, sat with her the entire night. Layla was able to visit with lots of friends and teachers. Many people who suffer CRPS, EDS, or POTS end up isolated and feeling alone. Being around a person in suffering is difficult and others don’t always know how to relate. But Layla has been blessed by a community who has never forsaken her. Friends (teenage girls) willing to sit beside her in silence if that’s what she needs. The noise, smell of food, and sitting in the wheelchair for so long was painful for Layla. But she did it. And did it without uttering a single complaint. Not once. She never even asked to leave early. It was a day to celebrate Brianna and GCCA, and Layla did it to the best of her ability. Thank you for praying. We’re thankful for God’s kindness to allow Layla to be there. 

Thank you also to the GCCA board (especially Ike and Tricia Thomas) and school donors who saw it through that there would always be a class for Brianna all the way through graduation. Not without great cost, as she was the only person in her class. We are truly grateful for your vision and commitment to the generations to come that allowed this to happen. We’re thankful for every teacher, headmaster, and staff member who have come alongside us to help us teach and disciple Brianna. We’re thankful for a school that not taught Brianna what to think but how to think. We are thankful for all of the fellow parents who have faithfully prayed for our school. Thank you to the ACCS and their high standards for accreditation. Thank you to FBC Granbury for being home to our school the past several years. We’re thankful for the beautiful facility that the Thomas’s hosted graduation and the reception. Thank you to Pastor Toby Sumpter flying from Moscow, Idaho (with flight issues due to weather) to give the keynote speech. Thank you Brett Cain for transporting Pastor Toby. Thank you Audra Cain for graciously preparing an amazing meal for the rehearsal. Thank you Ashley Keith for so quickly getting the word out about the delay. We’re thankful for our pastor who drove in from Ft. Worth to be at Brianna’s graduation. Thank you to everyone who gave up time from their schedule and came to celebrate. We’re thankful for my mom who purchased all the food for the reception and for her my sister setting it all up. Thank you to the Junior class for the hilarious and heart felt video honoring Brianna. Thank you for praying for Brianna. 

Thank you for your continued prayers of intercession for Layla. 

If you would like more information on our School, here’s a link: https://www.graceclassical.com

To find a classical Christian school in your area or to learn more about classical Christian education use this link: https://classicalchristian.org

“I am greatly afraid that many professing Christians do not realize what a gross sin it is to complain.” —Charles Spurgeon 

This past week, Layla was not able to stand. However, Bryce was able to get Layla‘s foot flat in the table and sustain some pressure pushed down on it. We will work towards this goal this upcoming week. Layla has been able to regain some range of motion in her neck and is holding herself with better posture in the wheelchair. Please pray for her hamstrings and club foot to relax, for her to be able to properly fire her quads, and for her to be able to stand for 5 seconds. 

The weather has been incredibly beautiful, and on Friday Layla felt up to enjoying it. We were able to utilize the Fayetteville Greenway and enjoy the beauty of God’s creation (with the exception of a near death experience. If you know me, you’ll understand). Caspian came along. Layla tried to get him to walk on his leash while bribing with his favorite treats to no avail. He may not have walked with the leash, but he provided us with lots of laughs as he would immediately collapse once placed in the ground. Layla was able to make it for about four miles without a pain increase. She was however exhausted. Please thank God for gifting her with the ability to the enjoy gifts of fresh air and humor. 

This weekend, she was able to try on clothes in a fitting room. It was not easy, and she was hurting more afterwards, but she did it. And now has a dress that she’s looking forward to wearing as well as some new shorts for NMR. 

The upper abdominal pain that spiked a few weeks ago has not gone away, but has somewhat diminished. She still wants to lie down every chance she can to stretch out her stomach. She can no longer eat avocados, but has tried to reintroduce some foods. Strawberries caused an allergic reaction, but her diet now consists of: sweet potatoes, brown rice, peaches, dried apple slices (not apple sauce), chick pea cereal, and she has begun eating pistachios again. She is still only able to eat one food at a time and it takes about an hour to consume a small sweet potato, but she’s making huge improvements. All but one day last week she was able to drink 3 liquid IVs and some plain water! Thank you for continuing to pray for her to obtain enough nutrition and hydration. Please praise God for the work He’s doing in allowing her to eat and drink again. 

Please continue to pray that she does not become disheartened but continue to fight the good fight. Proverbs 17:22 tells us: “a joyful heart is good medicine, but a crushed spirit dries up the bones.” Please thank God for sustaining us and pray for our entire family to have renewed strength. 

"Peace is as infectious as panic. If my soul is quietly at rest in God, then others will share my peace, because I share His." 

  —Elisabeth Elliot

Last week, we had the pleasure of celebrating Ezra’s 12th birthday together as a family. Layla attempted to go to the movies; she didn’t make it long, but we’re proud of her for trying. However, Sunday began her suffering from a huge increase in her stomach pain which led to a decrease in both her food and liquid intake as well as sleepless nights. The location and movement of the pain had her doctors wanting to rule out appendicitis. The ER visit confirmed it wasn’t. Please pray for this pain to subside and for her to increase liquids and foods to properly nourish her body as she fights towards remission. 

Despite hurting, she has continued her work in NMR and at home and is continuing to make progress. This week, we saw great progress in her range of motion with her neck, her right quad continuing to respond by firing with the assistance of stim, and her foot range of motion improving (with Bryce working it). 

We are working towards the goal of Layla being able to stand in two weeks time! Two weeks!! She’s been wheelchair bound since March of last year, and we are thrilled at the thought of her being upright on her own two feet again. It’s exciting to have something so tangible to work towards. Please pray for her stamina and for her to be encouraged as she works towards this milestone. Daily, we remind her and the rest of our family, that all the works of our hands are not done for us but for God’s glory. God had been and will continue to be faithful to provide our daily bread; please praise Him for sustaining Layla throughout this trial that has caused her to suffer intense pain both physically and mentally and for giving us continued peace as we trust in him.

A side note, this week we witnessed the culmination of our kiddos classical Christian education in the presentation and defense of their Junior and Senior theses. Our children—and Justin and I—have been incredibly blessed by the teachers and advisors who poured into our children. Thank you all for your faithfulness to the Lord and for coming alongside us to help us to educate our children. We pray for God to continually bless the works of your hands.

“As believers, we can find grace in God. And that Grace enables us to actually glory in tribulation. This seems very counterintuitive. God’s Grace is available to us in tribulation, not just in peaceful quiet times. Doesn’t it seem weird to be glorying in troubles? No, because as Christians, we know that God uses trials and afflictions, hardships and adversity to build us up. He’s told us so, here in Romans 5, Paul tells us that trials and tribulations produce perseverance. Steadfastness. And this builds character. Good character. Strong character. Now of course, just suffering through a trial does not produce Godly character; it’s suffering by faith through a trial that has this good affect on us. Rejoicing. Glorying in the trouble is what brings about this Godly result. Let’s face it. It’s rejoicing in the Lord; it’s glorying in Him as we walk through it. And God’s grace is what enables us to glory in the tribulation. He gives us the faith to do this.” —Nancy Wilson (https://podcasts.apple.com/us/podcast/femina/id1513264253?i=1000605809329)

This week, we’ve seen benefits from Layla’s time with Dr. Leon as her quad has been responding to the stimulation. And she was actually feeling it move. This is step one to her being able to control it herself. Her hamstring has been like a drum, and unable to disengage. But this week, we’ve felt it relax some. During NMR, Bryce and Justin have been able to straighten her leg and foot with much less effort. Her foot has been shaking as she’s trying to find it and activate the muscles. 

Dr. Bethany was gracious to make a special trip to the clinic to treat Layla for cat allergies and a couple of other allergens on Monday. 

Noah was able to have two visits with Dr. H., and was able to take a couple of steps—albeit painful steps—without the aid of crutches. Please continue to pray for healing in Noah’s feet and ankles. 

Layla and I enjoyed having the week with our family and being able to celebrate Easter and both our our birthdays with them. We even found a bakery in Fayetteville that made cupcakes free of gluten, dairy, eggs, and peanuts, and she actually tried a bite. 

“It is precisely the presence and help of Christ in times of suffering that makes it possible for us to stand up under pressure.” —R. C. Sproul

Layla and I have safely returned from New York and are excited to have our family with us in Arkansas this upcoming week. We already see fruition from our time with Dr. Leon in both her sleep (she’s been averaging about nine hours) and ability to travel. Today was a long travel day. We left our hotel at 5:30 am and arrived back in Arkansas apartment around 5:00pm. Not only was she in less pain, but she did not require the use of the ARP during travel and even took a little nap. We drove into the city last night. Layla is so easy to please; she wanted to see the Brooklyn Bridge and a yellow taxi. Although not a vacation, we made the most of our time and on a day of no treatment, we drove through the Hamptons and up to Montauk Point. Beautiful views and incredibly peaceful. 

Dr. Leon and his staff are amazing. They worked through lunches and stayed after hours to make sure that Layla was fit into the schedule and were incredibly kind and encouraging. We have homework to continue helping her brain to heal and will begin back at Spero on Monday. The two and four week marks are when we should see the most benefits of her time with Dr. Leon. 

Join us in praising God for allowing us to travel safely and to giving Layla the ability to enjoy parts of New York. Please pray that her brain continues to develop new and healthy pathways that are able to communicate properly with her body leading to her being able to correctly move her leg and foot. Please pray that she begin to eat a variety of foods to rebuild muscles, and praise God that she has not required a feeding tube. Shout praises to our merciful God for the heart that He has given Layla and that she has not given up nor given in to the temptation to have a grumbling attitude. Thanks be to God. 

“It is precisely the presence and help of Christ in times of suffering that makes it possible for us to stand up under pressure.” —R. C. Sproul

Layla and I have safely returned from New York and are excited to have our family with us in Arkansas this upcoming week. We already see fruition from our time with Dr. Leon in both her sleep (she’s been averaging about nine hours) and ability to travel. Today was a long travel day. We left our hotel at 5:30 am and arrived back in Arkansas apartment around 5:00pm. Not only was she in less pain, but she did not require the use of the ARP during travel and even took a little nap. We drove into the city last night. Layla is so easy to please; she wanted to see the Brooklyn Bridge and a yellow taxi. Although not a vacation, we made the most of our time and on a day of no treatment, we drove through the Hamptons and up to Montauk Point. Beautiful views and incredibly peaceful. 

Dr. Leon and his staff are amazing. They worked through lunches and stayed after hours to make sure that Layla was fit into the schedule and were incredibly kind and encouraging. We have homework to continue helping her brain to heal and will begin back at Spero on Monday. The two and four week marks are when we should see the most benefits of her time with Dr. Leon. 

Join us in praising God for allowing us to travel safely and to giving Layla the ability to enjoy parts of New York. Please pray that her brain continues to develop new and healthy pathways that are able to communicate properly with her body leading to her being able to correctly move her leg and foot. Please pray that she begin to eat a variety of foods to rebuild muscles, and praise God that she has not required a feeding tube. Shout praises to our merciful God for the heart that He has given Layla and that she has not given up nor given in to the temptation to have a grumbling attitude. Thanks be to God. 

“If you believe that every event and circumstance in your life is part of God’s plan and purpose for you, then, would you not, even in the midst of a great trial praise Him.” —Dr. Derek Thomas

God has been incredibly gracious to us. During the flight to New York Layla was able to use her Arp wave and PRS and her pain did not flare! Thanks be to God. Driving on the New York roads—through the deep chasms known as potholes—has been a challenge for her. However, the clinic is a mere five minutes from our hotel. Layla has only been able to handle one treatment per day before it overwhelms her system. Dr. Leon believes that pushing her too much would be counterproductive, so we’ve extended our stay to continue treatments next week. We’ve been blessed by incredibly kind hosts at our hotel who have gone out of their way to accommodate us. They worked tirelessly to find a way for us to stay in house, despite being fully booked. 

Layla still has photosensitivity, but is taking off her sunglasses more and more to fight through the pain to help her body heal. This week, her nighttime sleep has been improved and she’s been napping. She decided she wanted to try crocheting again; so we picked up some items from Michael’s. Her hands have had discomfort while trying, but she’s still trying! She’s also been drawing again! Although driving is difficult, we drove fifteen minutes to a beautiful beach on Smithtown Bay. She didn’t want to get out of the car, but she enjoyed hearing the waves and watching the seagulls. I collected some seashells and took pictures for her. The solitude of an almost empty beach as we were able to behold the beauty of God’s creation was amazing. In addition, my oldest friend drove about four hours one way to be able to visit with us. It was great to catch up and despite not seeing each other since Layla was a newborn, it was as though we picked up right where we left off. 

Friday night, we will drive to a different hotel closer to the airport. She wants to see the Brooklyn Bridge. It’s encouraging that she e is wanting to do more things. 

Thank you for your continued prayers for Layla and our family. Please pray that these treatments are successful in creating new pathways for her brain. 

She was pretty tickled by this bird trying to get food out of somebody’s fast food bag.

“Do not let your happiness depend on something you may lose.” —C. S. Lewis

The trip to New York was challenging for Layla, but we were still able to enjoy laughter and our time together despite the pain. In God’s goodness, the ARP and PRS eased some of her pain during the flights. The car ride from the airport to the hotel was the most difficult leg of the trip. We checked in just before 2am, and she was asleep within a half hour! 

We’re looking forward to our first visit with Dr. Leon late this morning. 

“Ye who long pain and sorrow bear, praise God and on Him cast your care: O praise Him, O praise Him, alleluia, alleluia, alleluia.” Amen. Even in the midst of suffering, praise Him. For he alone is worthy of our praise. 

Layla is scheduled next week with Dr. Leon in New York. We’re thankful for how quickly they’re able to work her into their schedule. Please pray for her during the long travel day and that this allows her brain and body to reconnect. 

“Remember my affliction and my wanderings, the wormwood and the gall! My soul continually remembers it and is bowed down within me. But this I call to mind, and therefore I have hope: The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. ‘The Lord is my portion,’ says my soul, ‘therefore I will hope in him.’ The Lord is good to those who wait for him, to the soul who seeks him. It is good that one should wait quietly for the salvation of the Lord.” Lamentations 3:19-26

God continues to remain faithful and to bless us with endurance and strength to trust in him. Praise God for his mercies each and every day. Layla’s healing is going much slower than we had hoped, but we know that this is all God’s good and perfect plan and timing. We will continue to do the work necessary each and every day as we wait patiently. 

We are blessed with a team of doctors and therapists who continue to pour into Layla and continually research the best ways to help her. Due to Layla’s brain remaining “stuck” Dr. K. has referred us for a week’s visit to Dr. Leon, a functional neurologist in New York. He will focus on discovering what is causing her brain to not function properly and to treat it in order to optimize her treatments here at the Spero Clinic.

This past week, Layla had a combination of cold laser therapy and NMR. Everyone was working to get her right leg and foot straight, while trying to get her hamstring to relax. No small task. We will continue the same treatment this week, except for Wednesday (her Cereset tuneup day and stops all the other modalities). In addition, she will have a couple of Magneshpere treatments to focus on relieving her stomach pain. 

Although Layla has yet to have much relief from her pain and is still wheelchair bound, she is more and more herself. She wants to do things again. Playing cards. Crafting. Shopping. Watching Donkey basketball. Yes, Donkey basketball. People actually riding on—and being bucked off—actual donkeys. She had been excitedly anticipating watching that last night; however the drive there proved to be too much. She worked through the pain and nausea to watch the first half. Although she found it hilarious, she couldn’t stay. We’re incredibly proud of her for trying and look forward to her being able to go and enjoy more and more things again. In the mean time, we’ll continue with small trips to Hobby Lobby. 

“It serves in no small degree to assuage our sorrows to consider that Jesus Christ, when we are afflicted, accounts our distresses his own, provided we, at the same time, take courage, and continue resolute and magnanimous in tribulation; which we should be prepared to do, since the Holy Spirit here [Psalm 20] forward us that the kingdom of Christ would be subject to dangers and troubles .”    

 —John Calvin

This weekend, we were blessed with the company of one of the Harrells from Grace Bible Church. Although our visit was brief, it was both lovely and encouraging. Layla was really struggling Saturday afternoon, so we took a visit to Hobby Lobby. We perused every aisle (except candles, she loathes the smell of candles as they make her pain flare). We found several crafts that piqued her interest and have enjoyed working on them together since. 

We saw another doctor, Dr. Bethany, on Friday. She tested Layla for more allergies and found that she had Mast Cell Activation Syndrome (MCAS). Her body has been creating mast cells to fight the inflammation from CRPS (a normal response) and to fight all of her new allergens (in addition to many other allergies, Layla has developed an allergy to cats: their fur, dander, urine, and saliva). However, her body has become overwhelmed by the mast cells and is now creating histamines to attack the mast cells. So it’s a vicious cycle. She’s creating more mast cells as a response to all the irritants and then creating more histamines to fight the mast cells. She also said that Layla does have a pretty bad leaky gut, but we’re working to replace that. She had her monthly evaluation Monday night, so we’ll have a follow up meeting early next week. 

She had a horrible flare up from the MCAS a few days before she was treated for it. It has caused an awful rash all over her face, neck, chest, and inside her throat, possibly gut too (but we can’t see it). So she’s really struggling to eat and sleep again. We’ve gone back to plain white rice again. It’s expected that the MCAS will get worse before it gets better. 

During lasers yesterday, another NMR therapist came in and wrestled her foot straight. Last Friday, Kacee came in to the clinic to with an extra session for Layla. Every single employee at this clinic truly wants to see her go into remission. We’re thankful for dedication of each and every one of them. 

Thank you for your continued prayers for Layla, our family, and all who are treating her.

“Calmly to rejoice is the lot of no man but of him who has learned to place his confidence in God alone, and to commit his life and safety to his protection. When, therefore, encompassed with innumerable troubles on all sides, let us be persuaded, that the only remedy is to direct our eyes towards God; and if we do this, faith will not only tranquillise our minds, but also replenish them with fullness of joy. True believers not only have this spiritual joy in the secret affection of their heart, but also manifest it by the tongue, inasmuch as they glory in God as he who protects them and secures their salvation.” —John Calvin

This week Cereset was Layla’s only treatment. The focus was on healing her brain. Her brain’s overall ability to handle stress—both physically and emotionally— went from a 56% to a 75%. She’ll be rechecked again in about three weeks. We’re praying that this helps her brain to get out of fight or fight mode and to be able to better speak to her feet and legs. Thank you, Brooke, for being so patient with Layla as she struggled to answer the questions through her foggy brain. Due to not being able to use the Arp this week, her stomach pain has gone back up from an 8.5 to a 9 and she hasn’t been able to eat any rice. She’s struggled through “her food” as she calls her pistachios and chick pea cheerios. Last night she struggled to sleep again because of the pain. However, the rest of the week she has soundly slept a solid 8 hours. She’s also been more alert and talkative (still a whisper). And today—for the first time in a VERY long time—she wanted to listen to music! Praise God! Tomorrow she can begin using her tools to help with pain, eating, and movement. NMR begins again on Monday. 

Tomorrow, Noah has another appointment with Dr. H to continue working in healing his feet. 

Another praise, Brianna and the boys had a car accident on Monday. Everyone is fine; although they were shook up. But once again, our family and friends poured out their love and kindness upon us. Justin was at work when it happened, but a friend, Jessica Trick, came up behind them shortly after it happened. She stayed with Brianna through the entire police report and took her for tea afterwards to calm her nerves. Another friend, Carrie Taylor, came and took the boys the remainder of the way to school. As soon as another friend heard about it, he, Glen Hoshauer, hurried to the scene to check on Brianna. After the police report was filed he checked over Brianna’s car and drove it to school for her. He was so gracious to call both Justin and I to fill us in on the details. My mom and stepdad got to school to check on the kids and to drive Brianna’s car on the highway to make sure it was not out of alignment or anything mechanically wrong with it. We were also blessed to have a very kind and patient officer be the one to respond to the accident. 

Fixing our eyes upon God and his mercies continues to fill our hearts with joy. Thanks be to God.

“But gratitude is all-important. Everything is a gift. Every smell, every second, every ice cream dollar. Gratitude for the whole story, from beginning to end, gratitude for the valleys and the shadows that lead us to the novel’s final page” —N. D. Wilson

Layla’s progress continues, albeit at a snail’s pace. We are learning patience in God’s perfect timing in new ways each and every day. Yet His mercy continues to abound. 

Most nights, Layla has been experiencing a full eight hours of sleep! Eighteen weeks ago, when we began this journey, a good night consisted of about two broken up hours of sleep. She was also taking high doses of Gabapentin which helped to alleviate some of her unending pain, but also blocked nerve function. This delayed her progress and kept us from seeing the real Layla. It’s been three weeks without medication, and despite no real pain drops, we get to have her back with us. Joking. Laughing. Conversing (still in a whisper). Playing games. Her.

One of the things—among much more—we learned from her visit with Dr. Shaw is that her left eye is light sensitive and her right eye is dark sensitive. Unusual, but not untreatable. This last week, she had additional cold laser treatments to work on desensitization (including the eye sensitivities) and to try and get her out of the sympathetic (fight or flight) state. Cameron, her cold laser therapist, had us change some of her homework with the Rezzimax because her nervous system Is being overloaded. 

However, all homework and Spero treatments will pause for this upcoming week. Instead, she will be attending Ceraset this week. My explanation of Ceraset is not going to do it justice, but it is fascinating. Thursday morning, she had a brain scan done at Ceraset. This scan showed where her brain is stuck in the sympathetic state and made a recording of her brain waves. The computer takes her own brain waves and translates it into a song that will be played back to her over this next week to help heal her brain through the music of her own brain. The reason all other modalities and electronic devices must pause for the week is to allow her body to focus solely on healing her brain and to help her brain to enter into the parasympathetic state. It will take a few weeks to see the full effect of Ceraset. 

This past week was our school’s Mid-winter break. It was great to have all six of us spending quality time together. Layla (and Caspian) was able to go to a pottery painting place in Rogers with us. Afterwards, we had to visit Build-A-Bear. She was exhausted, but had a great time. While here, the other kids were not only able to accompany us to Layla’s treatments, but Brianna and Noah were also able to receive adjustments from Dr. H. Both of the older two kids have also been diagnosed with Ehler’s-Danlos Syndrome (EDS). All CRPS patients have EDS, but not all EDS patients develop CRPS. Brianna, due to EDS, has had knee issues for years. Her knee caps slide all over and dislocate. Dr. H. discovered that Brianna also has foot and ankle issues that we didn’t even know about (similar to what Noah has been experiencing, just not as bad yet). Due to EDS, Noah has been experiencing foot pain and the inability to walk/stand without crutches since the end of November. He saw two different doctors at home that said “his feet are a bag of bones” because there is no connective tissues. They said there wasn’t really anything that could be done but told him to use prescription arch supports and braces and to stay off of his feet. After his first visit with Dr. H., he already began developing an arch and feeling a little bit of relief. It’s no wonder everyone refers to Dr. H. as the foot wizard. 

Next week, Layla will resume seeing Dr. H. and her other Spero treatments. The latest evaluation estimated seven more weeks, excluding this upcoming week of Ceraset. Thank you for your continued prayers and support.

Praise to the Lord, the Almighty

VERSE 1
Praise to the Lord, the Almighty, the King of creation!
O my soul, praise Him, for He is thy health and salvation!
All ye who hear, now to His temple draw near,
Join me in glad adoration.

VERSE 2
Praise to the Lord, who o’er all things so wondrously reigneth,
Shelters thee under His wings, yea, so gently sustaineth!
Hast thou not seen how thy desires e’er have been
Granted in what He ordaineth?

VERSE 3
Praise to the Lord, who doth prosper thy work and defend thee!
Surely His goodness and mercy here daily attend thee;
Ponder anew what the Almighty can do
If with His love He befriend thee.

VERSE 4
Praise to the Lord, O let all that is in me adore Him!
All that hath life and breath, come now with praises before Him!
Let the amen sound from His people again;
Gladly forever adore Him.

Such an amazing song of adoration for our Lord. He alone is due our praise, even in our trials. 

Back at Christmas, when Layla was in the ER for breathing issues they ran bloodwork. The ER doctor was concerned about her thyroid and told us to get her to an endocrinologist. We did. However, the endocrinologist did not run any other labs but told us to stop her thyroid supplements. We felt like it wasn’t the best plan and followed up at the clinic. Dr. K. from Spero ordered more bloodwork. The lab processing the test was so concerned by her numbers that they ran the them twice in different machines. She was in extreme danger from hypothyroidism. We’re thankful for God’s protection of Layla’s life and for Dr. K.’s knowledge in rectifying it. 

Last weekend, Layla and Justin schemed for him to make a surprise visit. I was so shocked all the neighbors probably heard me scream. Friday, Layla went out for a fun trip with us to Build-A-Bear to get a bear with crutches as a reminder of her goal to be able to stand with crutches this month. She was exhausted afterwards, but we had fun getting her out again. 

Saturday was her first day with no Gabapentin. God was gracious to Layla, and she had no adverse reactions. In addition, Kacee saw significant improvement in the speed that Layla is now able to fire muscles due to the increase in her neuroplasticity. She has also been herself by joking around and having fun. 

On Monday and Tuesday half of her NMR treatment was done sitting in an armless chair. It was a significant amount of work for her to hold herself up and do the movements required. But she did it without complaint. In fact, due to God’s gift of faith to her, she has never uttered a single complaint throughout this trial, but has trusted His sovereignty. 

Today, Layla had her first pain drop!! It was only a half point and didn’t stick, but it is a huge step. Another great thing that we’re seeing is the pads used in NMR have begun leaving red marks and she has a small bruise on the back of her right knee. This is worth celebrating because we’re seeing blood moving properly and her body correctly responding to stimuli. Another amazing thing this week, was with the winter weather, Layla did not have any flares. 

On Saturday, she’ll go in for two visits with Dr. Sheen who specializes in quantum Neurology. He’s traveling from Nebraska to the clinic to work with some of the Spero patients. We’re also looking forward to visiting with dear friends this weekend who are traveling all the way from home to visit. 

Please continue to thank God for the work that He is doing in Layla both physically and spiritually. 

Psalm 118:28-29 “You are my God, and I will give thanks to you; you are my God; I will extol you. Oh give thanks to the LORD, for he is good; for his steadfast love endures forever!”

We give thanks to the Lord in both the valleys and mountain tops. Today was a mountain top day. Layla had her first NMR combined with cold laser and did fantastic. We saw the most movement in her right big toe! Although she was exhausted, she still did exercises at home during lunch break and this evening(and has more to do). This afternoon, she was able to sit up in her bed unsupported for quite a while. It has been many months since the last time I heard Layla laughing as much as she did today. We thank God for the great progress today as well as for the gift of laughter. Please continue to pray for her to be encouraged and to not grow weary in honoring God throughout this trial, and that her work be done joyfully unto the Lord.  

Please also pray for her as tomorrow evening will be the second to last drop in medication. Lord willing, Friday morning will be her last Gabapentin!

Psalm 126 “When the LORD restored the fortunes of Zion, we were like those who dream. Then our mouth was filled with laughter, and our tongue with shouts of joy; then they said among the nations, “The LORD has done great things for them.” The LORD has done great things for us; we are glad. Restore our fortunes, O LORD, like streams in the Negeb! Those who sow in tears shall reap with shouts of joy! He who goes out weeping, bearing the seed for sowing, shall come home with shouts of joy, bringing his sheaves with him.”

Yesterday, we had Layla’s consultation (every 4 weeks) to follow up on her latest evaluation. The newest estimate, although subject to change, says that she has 8 more weeks of treatment to be in remission. She also successfully reduced medication again. Three more titrations to be completely weaned from Gabapentin. 

During NMR today, her leg and foot were straight at the same time! She fought hard to get there (as did Kaycee). Every muscle in her leg was shaking and screaming. After the stim and assistance of therapists ended, her leg did not immediately curl back up. She’s now running background on the ARPWave to minimize soreness to enable her to do it again tomorrow. 

Layla was able to allow Dr. H. to adjust her right foot today. This in and of itself is a huge accomplishment because when we started here 14 weeks ago the allodynia was so bad in her foot that a sheet would cause it extreme pain. While adjusting it, Dr. H. showed me how badly her foot has been dislocated this entire time; it will take a while for it to heal and stay in place. 

Please rejoice with us in the progress being made and continue to pray for Layla to have renewed strength each day for the spiritual, mental, and physical battle before her.

The Eleventh question in the Westminster Shorter Catechism answers, “God’s Providence is His completely holy, wise, and powerful preserving and governing every creature and every action.”  Throughout Layla’s struggle, God has been gracious to give us comfort and rest in knowing that this is His Holy and wise plan established from eternity past. “The Lord is near to all who call on him, to all who call on him in truth” (Psalm 145:18). 

Layla has recovered from the RSV bronchitis. It hit her weak body pretty hard, and she lost ground in the fight against CRPS. But this has been a good week of regaining that which was lost. She is eating better and has gained a tiny bit of weight. She has, again, been working to straighten her right leg and foot. She has has the strength to do the work at home in the evenings. She has been joking and laughing. She has reduced her Gabapentin by another 100 mg. Thank you for faithfully praying that God’s will be done. 

Justin has been able to be here with us for the last several days. Not only is it good for the three of us to have time together, but he can wrestle her foot (with stim) much better than I can. Both Layla’s foot and hamstring seem to have super human strength to go the wrong direction. However, she is beginning to regain communication to her muscles and briefly relaxes them and can lengthen them. 

“Your hands have made and fashioned me; give me understanding that I may learn your commandments. Those who fear you shall see me and rejoice, because I have hoped in your word.I know, O LORD, that your rules are righteous, and that in faithfulness you have afflicted me. Let your steadfast love comfort me according to your promise to your servant. Let your mercy come to me, that I may live; for your law is my delight.” Psalm 119:73-77

God is good. Layla has been using the nebulizer and appears to be over the viral infection. It took a lot out of her. But she’s been able to rest about six hours a night for the past week. This week was light on treatments to allow her body to heal. Next week, she gets back to it. She’s lost some range of motion in her leg and foot during this time, but we’re confident that she’s going to work hard to regain ground. Please pray for her to regain movement. 

God is good. Last week, her resting heart rate was sky rocketing (reaching 170 and staying in 140’s). Yesterday during NMR treatment, her heart rate was the lowest we’ve seen it in a long time. It got down to 74. Please pray for her heart rate to continue improving. 

God is good. When we started at Spero Clinic, Layla was on 3,000 mg of Gabapentin a day and still in excruciating pain. Today, she is down to 500 mg per day. We’re only titrating it by 100 mg a time. Each drop hits her hard, but she is doing the work necessary. Please pray for her to have the strength to continue.

God is good. The team of doctors and therapists working for Layla truly care for her. Kaycee has given us many things to work on in the evenings and during weekends to continue Layla‘s healing. Please pray for the doctors and therapists who dedicate themselves to so many of the chronically ill patients here at the clinic. 

God is good. Layla had genetic testing done this week. We learned quite a bit through it. There are a few things she is still deficient in and is beginning supplements to rectify. We also learned that she cannot process any glyphosate, an ingredient from Round-Up that is found in foods. Due to this, she needs to avoid General Mills products. That includes Chex. Chex have been a staple for her; we’re still trying to find something that won’t harm her and agrees with her stomach. Please pray for Layla as we continue trying to find foods that nourish her and are tolerated by her stomach. 

God is good. When she passed out and fell out of bed last week, she injured her left arm. It was really swollen and painful. Thankfully, nothing was broken, and Dr. H. was able to adjust it and put everything back in place. The swelling and pain are beginning to come down. Please pray that Layla no longer falls from her bed. 

God is good. During this viral infection, Layla’s ribs have been dislocating much more frequently. Many times when I pick her up, her ribs or shoulder dislocate. This last week, even car rides have begun to do this.  Both Drs. H. and Lucas have been able to put them back for her. Please pray for her to joints to stay in place. 

God is good. Please praise God for all that He is doing in and through Layla. Please pray for Layla to be continually encouraged to do the incredibly difficult tasks required of her. 

"Yet there is a God who is sovereign, whose will is greater than ours. His will restricts my will. My will cannot restrict His will. When He decrees something sovereignly, it will come to pass—whether I like it or not, whether I choose it or not. He is sovereign. I am subordinate."

—R.C. Sproul

Thank you for your continued prayers for God to be glorified through Layla’s circumstances. She’s had been having a rough time. Over the weekend her difficulty breathing increased and she began wheezing. We called Teladoc to get an inhaler. However, she was too weak to breathe the medication in properly.  Monday, we took her to the ER for breathing treatments and IV fluids. She was diagnosed with RSV bronchitis. Her bloodwork showed that her TSH (thyroid levels) were extremely low, despite medication for it.  Normal levels are from .47-4.68, but hers is .02. We were told she needed to see an endocrinologist right away. We talked to a couple of places, and it was going to be about a six month wait. However, one doctor in Fayetteville is working her in before their first appointment tomorrow morning. We look forward to getting more answers on how to help her. 

At the latest consultation, Layla’s schedule has been extended through mid-March. This is tentative based on progress made thus far and is subject to change. 

Throughout this sickness (and always) everyone at the clinic has been great. Each doctor and therapist truly cares about Layla’s health and wants what’s best for her. They go above and beyond to provide for her care. Thank you to everyone who has made it possible for us to be here. 

"Jesus slept on a pillow in the midst of a raging storm. How could He? Because He slept in the calm assurance that His Father was in control. His was a quiet heart."   —Elisabeth Elliot

Layla finished week 10 today and has a long weekend ahead. This week, she had a chest X-ray due to her lungs hurting. Thankfully it is just a cold and isn’t pneumonia, but due to her weakness she struggles to break up the mucous to cough it up. She’s drinking pineapple juice (not an easy task for her) to help thin it out. Through the X-ray, it confirmed what her therapists all suspected; she has developed musculoskeletal scoliosis. Her NMR therapist, Kaycee, is running protocols to correct it. We are continuing to decrease Layla’s Gabapentin but are titrating it at a much slower rate. She had her first adjustment with Dr. H, who was able to put some ribs back in place.  We are incredibly thankful to all the people here that are contributing to Layla’s recovery. Yesterday afternoon, Layla fainted in the waiting room. Dr. T., Cam, and Amanda immediately checked on her and followed up with us. Cam also came to meet with us during his break to give us more exercises to do with Layla to improve her spatial awareness. Although we didn’t see huge improvements this week, Kaycee saw an improvement in Layla’s muscle engagement during NMR. Layla still struggles with eating but is eating tree nuts and Chex. She’s currently 106; at the start of the summer, before the gastroparisis set in, she was a muscular 130 pounds. It’s a rollercoaster ride, but we rest in the assurance that our Father is in control of this entire situation.

Isaiah 26:3-4 “You keep him in perfect peace
whose mind is stayed on you, because he trusts in you. Trust in the LORD forever, for the LORD GOD is an everlasting rock.”

This week and medication drop has been extremely difficult for Layla. Every day has ended with her sobbing in pain. Today it began earlier. She was in horrible pain from around noon on. Today in NMR, Kaycee worked on POTS protocols that helped calm Layla’s racing heart and improved her breathing. Although she was still in a lot of pain, her body calmed down. Due to the elevation in pain, she has not slept well this week and has been struggling to drink and eat today. 

When we arrived home this evening, we set her up in bed with the ARP wave to calm her and with the P.R.S. to help with her rib pain. I then went to get her a drink and came back to find Layla had fallen out of bed. She was on her head with her body crumpled on top. She doesn’t appear to be further injured, and she infant sure how it happened. 

Please pray for her nervous system to calm down, her heart rate to slow down, breathing to be slower and more efficient, and for her to sleep well throughout the entire weekend. Tuesday, she will see another doctor to get a prescription to titrate the Gabapentin even slower. 

We’re looking forward to having our family here with us this upcoming week. 

“The only way to learn strong faith is to endure great trials. I have learned my faith by standing firm amid severe testings.” —George Muller

Since Sunday, Layla has had an elevated heart rate. While resting, it hasn’t dropped below 119 and has spiked to 157. Thankfully, she has not had trouble with her blood pressure. Right now, she’s exhausted from not sleeping at all last night. But, yesterday during NMR, Katie was able to get her right leg to go completely straight with stim. And today with the stim, Layla was able to engage her quad and straighten her leg for herself!

“The fear of God is the death of every other fear; like a mighty lion, it chases all other fears before it.” —Charles Spurgeon

This week was tough. With the reduction in Gabapentin, Layla has had more pain flares. But, we’re thankful for the healing that is happening in her body, and that it is allowing us to step her off of the medication. The plan is to continue reducing by 200 mg every Monday until she is completely off it. Although she’s been in more pain and more swollen, she was able to curl and straighten (slightly) the toes in her right foot several times. It was exhausting for her, but she did it! 

“Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? And which of you by being anxious can add a single hour to his span of life?” Matthew 6:26-27

As we face the trials laid out before us, we have nothing to fear. God has ordained each of Layla’s steps, and He is good and worthy to be praised. As Layla begins week 7, she is also weaning off more of the Gabapentin. This comes with both challenges (increase in pain) and rewards (regaining more control of her nervous system). Please join with us in praying that she be faithful in looking to the Lord of heaven and earth and to continue trusting in Him. Please also pray that the pain increases be minimal. 

We also praise God for our oldest son, Noah, who turned 16 today (and got his driver’s license). We have been blessed by such a loving and considerate friends who threw him a surprise party in my absence. Thank you you all who have cared for our family and provided for each of our needs and so much more (including sending us a complete Thanksgiving meal).

“But in Friendship…we think we have chosen our peers. In reality, a few years' difference in the dates of our births, a few more miles between certain houses, the choice of one university instead of another, posting to different regiments, the accident of a topic being raised or not raised at a first meeting—any of these chances might have kept us apart. But, for a Christian, there are, strictly speaking, no chances. A secret Master of the Ceremonies has been at work. Christ, who said to the disciples "Ye have not chosen me, but I have chosen you," can truly say to every group of Christian friends "You have not chosen one another but I have chosen you for one another." The Friendship is not a reward for our discrimination and good taste in finding one another out. It is the instrument by which God reveals to each the beauties of all the others. They are no greater than the beauties of a thousand other men; by Friendship God opens our eyes to them. They are, like all beauties, derived from Him, and then, in a good Friendship, increased by Him through the Friendship itself, so that it is His instrument for creating as well as for revealing.” —C.S. Lewis

Layla and I had a blessed Lord’s Day. It began with worshiping with our church family from afar. Technology also served us to do some of Layla’s therapy at home. With the ARPWave—and my assistance—she straightened her got abs held it for a few seconds. The day ended with the fellowship with dear friends. We’re truly blessed by the dear people we get to call our friends. Now to begin week 6 of treatment. 

Psalm 28:7 “The LORD is my strength and my shield; in him my heart trusts, and I am helped;
my heart exults, and with my song I give thanks to him.” Today was a rough one for Layla. She had pain flares and very little sleep last night. Today, she napped for a few minutes during our lunch break. But, after I woke her for her next session she was hurting  worse and cried for half an hour.  Pain manifested in other areas including her jaw and larynx. During NMR, her therapist (Katie) put stim on the back of her neck to relieve the pain. It helped. Praise be to God for His grace in giving her doctors and therapists the knowledge of how to alleviate this pain and to retrain her brain to communicate with the rest of her body again.  Layla has only whispered for a long time now, so Katie also wanted Layla to speak while the stim was on her neck. She desperately tried, but her brain doesn’t remember how to speak other than a whisper. During the weekend, Layla’s homework is to practice humming (she was unable to do this today either) and trying to talk while continuing to work on straightening her leg.  Relearning these skills is both physically and mentally exhausting, but she’s doing the work necessary

Proverbs 3:5-6 “Trust in the LORD with all your heart, and lean not on your own understanding; in all your ways acknowledge Him, and He will make your straight your paths.”

There were hard times of great pain and tears today. Yet, God is still good and does only good. He’s worthy to be praised. 

In God’s kindness, there we’re also some times of rejoicing today. Layla made it through her longest day (9-6:15). It concluded with her benchmark evaluation (the next one is in four weeks); in every single test, she showed improvement! This morning, Layla was joking around some and laughing. Such a great sound to hear! Over the past several days, numerous other patients have commented on how much better she’s looking. 

Thank you for your continued prayers. 

I Thessalonians 5:11 “Therefore encourage and build one another up, just as you are already doing.” Thank you all for living out your faith and truly encouraging us through the truth of Scripture. Thank you also for all the tangible ways that you are caring for our family. 

Although this weekend had some new challenges (strange headaches, ear pain, rashes, and racing heart rates), it also had some great things too. Laurie Hoshauer and her crew graciously brought the other three kiddos up to visit, bringing with them a banner with words of encouragement from the entire upper school. The Hoshauers and our kiddos had Layla laughing and smiling more than we’ve seen in a very long time. Justin was able to get here yesterday afternoon; this is the first time the six of us have been together in over a month! It was a great time. We played—Layla watched—the funniest game (Do You Really Know Your Family), and Layla was smiling and laughing at and with us.  The kids are on their way back home now, and Justin will be able to stay a couple of days and attend Layla’s treatments with me. In addition, Layla slept about six hours last night and has been napping for about two hours this afternoon! We’re looking forward to the beginning of week 5 tomorrow. 

https://podcasts.apple.com/us/podcast/renewing-your-mind-with-r-c-sproul/id110916650?i=1000585625050

Suffering is a difficult subject to get our head around. I would like to encourage you to take 23 minutes to listen to this teaching from R. C. Sproul as he explains biblically that suffering is a divine vocation. Following are a few quotes from this podcast to ponder: “Job did not suffer for his sin. Job suffered for the glory of God. It was his vocation.” 

“Most of us don’t see the reason for our suffering in this world, but the message of Scripture is that God stands over and above all human suffering, and it is a divine vocation.”

“There was one man who was born that had one purpose in his whole life, one vocation, the whole reason that he was born in the first place. It wasn’t to be blind. It wasn’t to suffer boils or the loss of family or cattle as Job. The whole purpose for this man’s suffering, his vocation was to do one thing and that was to die. And his name was Jesus…It was Christ’s vocation…He was called by God to suffer and to die…but the only way endure what he endured was to understand that it wasn’t the devil who put him there.”

If you are going through a trial of your own, I pray that it points you towards Christ, who willingly set aside his glory to suffer and die on your behalf. 2 Corinthians 5:21 “God made Him who knew no sin to be sin on our behalf, so that in Him we might become the righteousness of God.”

In NMR yesterday, Layla was able to hold her legs up after her therapist lifted them to stretch. Today her therapist, without the aid of stim, used a sport’s massage on Layla’s right foot.  And Layla straightened her right leg! On her own! While that was happening, she also spoke above a faint whisper. I could hear her over the equipment on the other side of the room!! She’s still hurting, but she’s making functional improvements.

Today started off well. Layla drank a whole protein shake for breakfast and a second one for lunch. However, the second one made her terribly ill, and her stomach has been in excruciating pain (more than normal, which fluctuates from a 9 to a 9+ on a 10 point pain scale). We met with Dr. H. today, and she said they see this in gastroperisis patients. She said that it goes from just fine with a shake—or any food—and the very next time it makes them sick. This whole process is like a dance with the back and forth.  She wants Layla to rest her stomach and eat white rice and water for the remainder of this week. She’s also going to have her take a break from the biocidin for two days and reintroduce it very slowly.  Please pray that this helps her stomach heal and that she have the endurance to work through the pain. 

Despite the intense stomach pain, during NMR she was able to straighten her leg without assistance with just the stim! This hasn’t happened since before she broke her leg last November. The last time it was straightened, her therapist put it into position for her. Because of the intensity of the nonstop pain, Layla is struggling to celebrate these victories. But Justin, the kids, and I (as well as her medical team) are continually reminding her of her progress and the work that God is doing both in and through her. May God alone be glorified through this trial. 

2 Corinthians 4:7-10 “Now we have this treasure in jars of clay to show that this surpassingly great power is from God and not from us. We are hard pressed on all sides, but not crushed; perplexed, but not in despair; persecuted, but not forsaken; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body.” Ligoneers Ministry explains this this paradox as “the Christian's glory is often seen in the present age when he suffers, not when he prospers.”  Soli Deo Gloria. 

Today had some big celebrations. Layla has begun the process of slowly stair stepping off of the Gabapentin. When this has been attempted previously, it was immediate that her body could not handle it as she was thrown into unrelenting pain. But last night she was able to sleep about six hours.  Eating went much better today: she drank two protein shakes and ate 4 tablespoons of white rice! On her own, she did her rehab homework and remembered to reach for her tools when the pain was increasing. While dressing, she was able to lift up her right toes! However, she’s currently in the throes of pain. She’s dizzy and miserable. In “A place of Healing” Joni Eareckson Tada writes, “those afflictions of mine—this very season of multiplied pain—is the background against which God has commanded me to show forth His praise. It’s also the thing that I am to reckon as ‘good and acceptable and perfect,’ according to Roman’s 12. God bids me that I am not only to accept it, but to embrace it, knowing full well that somewhere down deep—in a secret place I have yet to see—lies my highest good.” 

Layla’s abdominal pain is intense this evening; she has me holding her in her bed. Please pray for relief and sleep.  But, please also rejoice with us for victories as well.  Today during her NIN treatment, her therapist was working on her left foot because it has 10% mirrored nerves to the right foot (her right foot has the severe foot and ankle contracture along with allodynia). About ten minutes after treatment ended, she was feeling tingling in the bottom of her right foot. Her NMR therapist said it was great news because it shows that some nerves are starting to wake up and her brain is trying to make those connections. 

The refrain from our family worship hymn this evening, “Lord of all, to thee we raise this our hymn of grateful praise.”

Thank you, Melissa Ward, for sharing this excerpt from The Gospel Primer. I pray that you also receive encouragement from this passage.  

“Perspective in Trials

More than anything else could ever do, the gospel enables me to embrace my tribulations and thereby position myself to gain full benefit from them. For the gospel is the one great permanent Circumstance in which I live and move; and every hardship in my life is allowed by God only because it serves His gospel purposes in me. When I view my m circumstances in this light, I realize that the vospel is not just one piece of good news that fits into my life somewhere among all

the bad. I realize instead that the gospel makes genuinely good news out of every other aspect of my life, including mv severest trials

The good news about my trials is that God is forcing them to bow to His gospel purposes and do good unto men improving my character and making me more conformed to the image of Christ. Preaching the gospel to myself each day provides a lens through which I can view my trials in this way and see the true cause for intelligent rejoicing that exists in them. I can then embrace them as friends and allow them to do God's good work in me.”

We just finished a meeting to go over Layla’s case. After reviewing all the doctors’ and therapists’ notes, the team anticipates Layla’s case taking a total of 17 weeks. It’s longer than we were hoping for, but they said it can go faster/slower based on how her body responds. One of the things that nobody anticipated was the amount of scar tissue they’ve found in her body, which they said is equivalent to an adult athlete, and will take over to break it all up. 3 weeks down. 

Psalm 121 “I lift up my eyes to the hills. From where does my help come? My help comes from the LORD, the Maker of heaven and earth. He will not allow your foot to slip;your Protector will not slumber. Behold, the Protector of Israel will neither slumber nor sleep. The LORD is your keeper; the LORD is the shade on your right hand. The sun will not strike you by day, nor the moon by night. The LORD will guard you from all evil; He will preserve your soul. The LORD will watch over your coming and going, both now and forevermore.

Yesterday was a difficult day. Layla’s pain level was at a 9+ all day. She was tired and discouraged. Please pray that today she have renewed strength and to keep her focus not on herself but on worshiping the Lord even through this suffering. 

Jeremiah 17:7-8 "But blessed is the man who trusts in the LORD, whose confidence is in Him.  He is like a tree planted by the waters that sends out its roots toward the stream.  It does not fear when the heat comes, and its leaves are always green. It does not worry in a year of drought, nor does it cease to produce fruit." What a comfort, especially in times of trial, to confidently trust in the creator of all things and know that this is all for His glory.  Layla is not seeing reduction in pain, yet, but I'm seeing improvements in her functionality and stamina.  This weekend, Justin and Ezra were able to visit, and they noticed a difference in her right away.  During NMR today, they used piezowave therapy, and she was able to feel areas of her right leg that she has not felt in almost a year.  She is still unable to communicate with her right foot, BUT she was able to pull her right knee in some on her own! She also sat in a chair--without armrests--and kept herself upright.  She was able to hold the position for a couple of minutes before leaning and needing to reposition herself and start over. Thank you for faithfully praying for Layla, our family, and all of her doctors.

Everyone we have spoken with has told us the first several weeks are the most difficult and that things usually get worse before they get better. Today, Layla was able to lie back in treatment again and got her right leg the straightest it’s been in almost a year!  She also has a reduction in her abdomen pain from a 9+ to a 9 for about 30 minutes. However, it was followed by an hour of tears with her in the most intense pain she’s ever had. She’s still hurting, but she’s calmed down. Please pray for her to sleep well tonight. “Trust in the LORD with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths” (Proverbs 3:5-6).

“For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison” (2 Corinthians 4:17). Although this suffering she is enduring by no means feels “light,” we know that it pales in comparison of the glory to come. Please join with us in praying for Layla to not lose heart. Last night was rough. Really rough. She didn’t sleep at all and her stomach is in horrible pain. Please pray for her to be encouraged; the ups and downs are to be expected. Please also pray for the stomach pain to ease.

Last night, Layla slept for 8 hours! It was broken up, but that’s the most sleep she’s had in many months.  Our next sleeping goal is for her to begin dreaming again. She was able to eat a little more today, but her stomach is really hurting as a result. BUT, she kept it down. Treatments were difficult today, but we’re amazed at some progress we’ve seen. During her Neuromuscular Reeducation (NMR), she was able to lie down almost straight (the right leg and foot are as straight as she can get them).  Joshua 1:9 “Have I not commanded you to be strong and courageous? Do not be afraid; do not be discouraged, for the LORD your God is with you wherever you go.”

Over the weekend, Layla listed some goals that she’s looking forward to doing again and asked if she could go camping when she starts feeling better! She’s unable to drink the Peptides but did drink most of one serving of a protein drink today and about 50 oz of water. Please continue to pray for her to increase her caloric intake.  Although her stomach pain is still at a 9, her right leg pain was reduced to a 6 for a short period of time! When I picked her up with the cradle hold this morning, she had her right arm around my neck. Her forearm and elbow popped so loudly that I thought I broke her arm. When speaking to the doctor, he said that it was her elbow dislocating and going back in. As he asked her more questions, he said that it sounds like her shoulders are doing the same thing which is a normal symptom of EDS. Thankfully it only causes tingling in her hand did not increase any pain. Philippians 4:19-20 “And my God will supply all your needs according to His glorious riches in Christ Jesus. To our God and Father be glory forever and ever. Amen.”

The end of week 1:

Psalm 3:3-5

“But you, O LORD, are a shield about me, my glory, and the lifter of my head. I cried aloud to the LORD, and he answered me from his holy hill. Selah. I lay down and slept; I woke again, for the LORD sustained me.”  Last night was amazing. Layla slept for 6 hours straight for the first time in many months. Most nights she’s somewhere between 2-4 hours with disturbances. Please praise God for the gift of rest. This weekend will have lots of rest for her, but she’s required to do homework throughout to continue the work begun in retraining her brain and muscles. 

Justin left this morning and had a safe journey back to the rest of the family.  We are incredibly thankful to my mom and stepdad for caring for our kiddos (and Kodi) to allow Justin to be here with Layla and I the first few days. We’re also thankful to those in the department helping to cover his shifts. Thank you to our church family for sending meals. Thank you, Haylee Ray, for transporting Ezra to every football practice this season. Thank you to everyone at our school for stepping in to cover for me, making accommodations for Layla, and for checking in on other three.  Thank you to every single one of you for petitioning and praising the Lord on our behalf. Thank you to everyone who has helped make this treatment possible by providing financial assistance to us. 

Please join with us in praying for Layla to increase her water intake and to be able to drink more of the Peptides in order to receive the nourishment her body requires. In order to maintain her current weight, she needs to drink 6 bottles of the Peptides a day. So far today, she’s only made it through two of them. 

Day 3: Today was a rollercoaster. “But I will hope continually and will praise you yet more and more” (Psalm 71:14).  Layla is experiencing a lot more symptoms. Her right foot is now on fire and very hot to touch, but the left foot is now purple and ice cold to touch. Her left foot is also experiencing a lot more pain and her left leg has been having quite a bit of ticks. Her stomach and rib pain are also intensified. We learned that people with EDS will often have ribs dislocate and go back into place; we don’t know if that’s what she’s experiencing, but it is a possibility. Some highs from the day: we learned that her experiencing the pain her left foot and the ticks are good things. Previously, she’s has numbness and tingling sensations, but the pain and ticks are signs that her brain is relearning about her left leg and foot.  We saw Layla smile and heard her laugh some. We watched the graduation of a man who has finished treatment and his CRPS is now in remission.  The room was jam packed with other patients and their loved ones rejoicing alongside him.  Many other patients and their parents encouraged us that these first several weeks are the hardest but it gets better. Please pray for her renewed strength for treatments tomorrow and that she work joyfully onto the Lord. 

Day 2: Layla worked hard. There’s a lot being demanded of her and the days are long, but through God’s strength she’s able to persevere. One of the most difficult tasks today was Electromagnetic Stimulation (EMR) with a water bath. It emits a frequency that closely mimics the heart. With this machine every single movement is greatly amplified. Layla’s right foot has wanted to curl up for the past several months, but over the last month she has been unable to straighten it. If we tried to move it for her, it caused immense pain. BUT, today during EMR she was able to hold her right foot in the correct position for 5 seconds on her own! After a lot of concentration she was able to move her big toe and eventually her other ones. The positioning of the pads also mimicked the walking motion to help recreate the cross connections in her brain. Afterwards, she was beat and her left leg twitch was extreme. However, the following treatment, Non-Invasive Neuromodulation (NIN) stopped the convulsion in her left leg and we saw a dramatic change in the tension in her face. Her photosensitivity has gotten worse, but she also can’t be in complete dark. So she’ll be sporting sunglasses inside. She’s still struggling to drink enough fluids. Please pray that she is able to drink more and to keep it down.  

“Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ. Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.” Romans 5:1-5. 

We give thanks for the work that He is doing in and through Layla’s suffering. Today was day one of treatment!  Rewind about twelve hours…after we finished our family worship through FaceTime and all hung up, Justin decided that he had to be here with Layla and I for her first day of treatment. He drove all night to be here with us. What a wonderful surprise! Not only is it great to have him here with us, but I would not have been able to describe each of the treatments had he not witnessed them alongside me. Layla was a trooper. Today was the longest time that she’s been in the wheelchair; our appointment was at 9 am and we finished around 6 pm.  Some of the treatments she had today were: Infrared Light Therapy with Manual Vagus Nerve Stimulation, Neuromuscular Reeducation, Lymphatic Drainage, NonInvasive Neuromodulation, and Frequency Specific Microcurrent. We’ll be adding in: Footbath Detoxification with Magnetic Resonance Therapy, Piezo Scar Tissue Treatment, Neurosage, and Therapeutic Exercise with Oxygen Therapy. Every doctor and therapist we met with was gentle with her and understood her allodynia (sensitivity to touch) and gastroperisis pain.  One of the main things she worked on today was trying to sit upright in her wheelchair, as she has been slumped over and curling up due to the pain. The goal for this week is for her to be able to sit up on her own for a short period of time. During treatment, even with mirror therapy, her brain thought she was sitting up tall, but she was still leaning and curling up. Through all of her hard work, she never complained and did the jobs asked of her. On the way back to our apartment, the exhaustion and discomfort caused her to cry, but she rested and did the work expected of her again at home. The rest of the week is going to be difficult, but we know through Christ who strengthens her, she can persevere and praise Him. 

Although this isn’t the Layla you’re used to seeing, she was extremely excited to get started. This picture is in the waiting room right before we began. 

“When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you. For I am the LORD your God, the Holy One of Israel, your Savior.” Isaiah 43:2-3a

Today is moving day. Please pray for us as we are traveling and specifically for Layla‘s comfort. Sitting upright in the car is difficult for her, especially over an extended period of time. Each and every bump and turn causes her pain.

We are thankful that this is our school’s fall break which is allowing us to make this trip as a family. Having an extra couple of days together is truly a blessing. 

We cannot express our gratitude to you all enough. Thank you for continuously praying for Layla, her healing, her daily renewal of faith in the Lord, and her medical team. Thank you for praying for our family. Thank you to the numerous friends, family, and strangers who have generously donated to provide for her treatment. Thank you to our church and school for loving us so well.  Thank you to those who have changed their plans to step in and teach my class for me.  Thank you to the hard work of Layla’s teachers to prepare lessons and record them for her.  Thank you to Layla’s dear friends who have sat with her in her suffering, sent cards, gifts, and given her encouragement.  Thank you to friends who have provided meals and been reliable transportation to get other kids to practice. Thank you to our family who is caring for our dog and home in our absence.  Thank you to Lift the Bar for generously donating your billboard, raffle items, and bracelets to provide for us financially and to get Layla’s story out to the community. Thank you to Wood’s Furniture in Stephenville for furnishing our apartment for us. Thank you all for the encouragement. 

We pray for each and every one of you. We pray that through Layla’s trial that you have been able to bear witness to God’s unwavering goodness. We pray that you are drawn near to the God who controls the wind and the rain, the merciful God who loves Layla more than any of us ever could. We pray that you have seen that God gives beauty for ashes and that He is worthy to be praised. 

Layla will be discharged from the hospital later today. She’s fully hydrated and will have a prescription for Zofran and an appetite stimulant. She’s lost quite a bit of weight, but if we can keep her above 100 pounds before her treatment at the Spero clinic, then she can avoid a feeding tube.

The news right now is, no news. Layla is still receiving fluids and several medications to help calm her stomach. They have her on no food/drink to allow her gut to rest. 

After receiving a bag and a half of fluids, Layla is still too dehydrated to be released. They’re admitting her to the hospital overnight. 

Layla is in the ER for IV fluids due to dehydration (Cooks used the smallest possible needle—24 gauge—to try to minimize agitating the CRPS any more than necessary). Despite her best efforts to drink, she’s unable to remain fully hydrated. As we watch her desperately needing liquids we are reminded of how desperately our soul thirsts for Christ. Psalm 63:1-8 “O God, you are my God; earnestly I seek you; my soul thirsts for you; my flesh faints for you, as in a dry and weary land where there is no water. So I have looked upon you in the sanctuary, beholding your power and glory. Because your steadfast love is better than life, my lips will praise you. So I will bless you as long as I live; in your name I will lift up my hands. My soul will be satisfied as with fat and rich food, and my mouth will praise you with joyful lips, when I remember you upon my bed, and meditate on you in the watches of the night; for you have been my help, and in the shadow of your wings I will sing for joy. My soul clings to you; your right hand upholds me.” What a gift that we have God’s Word not only in our language, but multiple copies in our home. Our soul cries out for nourishment that God provides.

The following is from Kimberly D. Henderson, and we pray that it is a source of encouragement to trust in God’s perfect sovereign plan in all things:  

“I would have pulled Joseph out. Out of that pit. Out of that prison. Out of that pain. And I would have cheated nations out of the one God would use to deliver them from famine.

I would have pulled David out. Out of Saul’s spear-throwing presence. Out of the caves he hid away in. Out of the pain of rejection. And I would have cheated Israel out of a God-hearted king.

I would have pulled Esther out. Out of being snatched from her only family. Out of being placed in a position she never asked for. Out of the path of a vicious, power-hungry foe. And I would have cheated a people out of the woman God would use to save their very lives.

And I would have pulled Jesus off. Off of the cross. Off of the road that led to suffering and pain. Off of the path that would mean nakedness and beatings, nails and thorns. And I would have cheated the entire world out of a Savior. Out of salvation. Out of an eternity filled with no more suffering and no more pain.

And oh friend. I want to pull you out. I want to change your path. I want to stop your pain. But right now I know I would be wrong. I would be out of line. I would be cheating you and cheating the world out of so much good. Because God knows. He knows the good this pain will produce.

He knows the beauty this hard will grow. He’s watching over you and keeping you even in the midst of this. And He’s promising you that you can trust Him. Even when it all feels like more than you can bear.

So instead of trying to pull you out, I’m lifting you up. I’m kneeling before the Father and I’m asking Him to give you strength. To give you hope. I’m asking Him to protect you and to move you when the time is right. I’m asking Him to help you stay prayerful and discerning. I’m asking Him how I can best love you and be a help to you. And I’m believing He’s going to use your life in powerful and beautiful ways. Ways that will leave your heart grateful and humbly thankful for this road you’ve been on.”

Kimberly D. Henderson, 2017 ©

Psalm 138

”I give you thanks, O LORD, with my whole heart; before the gods I sing your praise; I bow down toward your holy temple and give thanks to your name for your steadfast love and your faithfulness, for you have exalted above all things your name and your word. On the day I called, you answered me; my strength of soul you increased. All the kings of the earth shall give you thanks, O LORD, for they have heard the words of your mouth, and they shall sing of the ways of the LORD, for great is the glory of the LORD. For though the LORD is high, he regards the lowly, but the haughty he knows from afar. Though I walk in the midst of trouble, you preserve my life;
you stretch out your hand against the wrath of my enemies, and your right hand delivers me. The LORD will fulfill his purpose for me;
your steadfast love, O LORD, endures forever.
Do not forsake the work of your hands.”

Layla has had a rough week. Her stomach pain has greatly increased and even eating a tiny bit of applesauce has been difficult. She hasn’t spoken much again this week and has mostly communicated through texts. 

But even through our difficulties God is still good. 

Justin and I were able to have a phone conference with her doctor from the Spero clinic to review the rest of her labs. Her liver enzymes are really elevated, which are indicative of her fighting an infection that is not currently active. She has hypothyroidism and hypoglycemia. Both can be treated and help increase her energy and decrease the dizziness and passing out.  Although she is suffering from gastroperis, it has not become a “leaky gut.” As she is still struggling to eat or drink, we need to monitor her weight closely. If she drops below 100 pounds she will be required to have a feeding tube. 

Her doctor said her prognosis is good, and she’s optimistic that Layla’s treatment may be on the shorter side. 

Psalm 3:4, “ I cried aloud to the LORD, and he answered me from his holy hill.” God has provided us with more answers to continue helping Layla’s body heal. At our consultation visit to the Spero Clinic they ran extensive blood work and food sensitivity tests. Wednesday (9/7/22) afternoon, we have a phone conference with the doctor to further review those tests. We also received a food plan for her along with a lists of food sensitivities that she needs to avoid; most of them are things that she’s been eating. Some of the foods to avoid are: gluten, oat, wheat, arrowroot, barley, buckwheat, millet, peanut, orange, lemon, and another dozen or so things. However, as she’s been restricted to easy to digest foods, she’s been eating quite a bit of grains, peanuts, lemons, and orange juice. Please join us in praying that as we remove these foods from her diet that she begins feeling relief from the constant abdominal pain. 

If you are going through a difficult time and need prayer or if you want to experience peace in times of difficulty, a true peace that passes all understanding, please reach out to one of us. We would love to speak with you personally, pray with you, and share with you about how truly great our God is. 

We also learned that Layla, and most CRPS patients in her condition, is suffering from osteoporosis. They said to treat her like she is fragile and wrapped in bubble wrap. If she breaks anything, she cannot receive traditional medical care and have bones cast. 

She’s also suffering from POTS which explains why she has passed out and why she’s constantly dizzy. She needs to be assisted in all activities to prevent falling. 

Please praise God with us for his merciful kindness in protecting Layla from all the ways that we would have worsened her condition. Please thank him for the way He renews her faith from day to day. Thank him that he is a good and loving God that has provided, not only for Layla, but our entire family, our daily bread. Each day, we awake to the endurance and strength we need—not by our own strength, but because of God alone. 

Psalm 91

“He who dwells in the shelter of the Most High will abide in the shadow of the Almighty. I will say to the Lord, ‘My refuge and my fortress, my God in whom I trust!’ For it is He who delivers you from the snare of the fowler and from the deadly pestilence. He will cover you with his pinions, and under his wings you may seek refuge; his faithfulness is a shield and bulwark.

 You will not be afraid of the terror of night, or the arrow that flies by day; or the pestilence that stalks in the darkness, or of the destruction that lays waste at noon. A thousand may fall at your side and ten thousand at your right hand, but it shall not approach you. You will only look on with your eyes and see the recompense of the wicked. For you have made the Lord, my refuge, even the Most High, your dwelling place. No evil will befall you, not Will any plague come near your tent. 

For He will give his angels charge concerning you, to guard you in so your ways. They will bear you up in their hands, that you do not strike your foot against a stone. You will tread upon the Lion and the serpent, the young Lion and the serpent you will trample down. 

Because he has loved me, therefore I will deliver him; I will see him securely on high, because he has known My name. He will call on me, and I will answer him; I will be with him in trouble; I will rescue and honor him. With a long life I will satisfy him and let him see my salvation.”

What an amazing God we serve that He has chosen to call Layla his own. That he is sovereign over all. A a child of God, we have complete confidence that nothing can bring harm to Layla unless the Lord permits it. She is perfectly inside his care. 

Throughout this trial, we’ve faced difficulty getting into neurology quickly. We were told that had we gotten in sooner, there would have been more options that may have prevented the CRPS from spreading further (nerve block or a spinal cord stimulator). After our consultation visit to the Spero clinic last Tuesday (8/16/22), we learned that those options could not only have exasperated her condition, but they would have hindered her recovery once she’s under their care. Thank you God for protecting her!

Due to the extensive pain in her abdomen  and difficulty eating/drinking, Layla had been referred to a G.I. Specialist. He identified the culprit of all the symptoms to be CRPS. However, he wanted to do an endoscopy and biopsy of her upper GI to ensure there wasn’t anything he was missing. We scheduled her, and she was supposed to have this surgery last week. However, there was a cancellation at the Spero clinic that allowed us to go in for a consultation visit within days of finding out about them. At this visit we learned a great deal about CRPS and Layla‘a condition.  One of the things we learned is that if we went ahead with the endoscopy that not only would her pain have intensified, but she may have ended up requiring a feeding tube. Praise be to God for his protection!

Layla is suffering from gastroperis ( GI system is shutting down) due to the CRPS. We learned how to properly feed her. She can only eat soft foods, very low fiber, no bananas, tiny meals, and we need to separate what she’s eating. If she eats a baked potato, she needs to first eat the bacon and cheese, wait 30 minutes, then eat some potato. Otherwise, foods will not be broken down and will rot in her stomach. She also is only capable of eating food portions the size of her fist. She needs A LOT of salt. We now know how to help her receive nutrients without worsening her condition. Thank you Lord for this knowledge!