Dear Friends,
Praise be to the Lord for the great things He has done! Alison continues to grow and prosper (she is currently 27” long and weighs 15 lbs, 1 ounce) under the Lord’s wondrous protection. Her sweet disposition continues to reveal itself (she even wakes up smiling). Alison is becoming increasingly vocal (she is beginning to learn to laugh and coo back in a conversation with us) and is increasingly playful (we play with her on the floor daily). She can now sit up and hold her pacifier without any assistance from us (she is also beginning to throw her pacifier on the floor). Alison’s appetite continues to increase (we were able to drop a feed—we are now down to four bottle feeds a day) and she is learning to eat baby food (she definitely does not like oatmeal J). She is growing a beautiful head of light brown hair. Finally, Alison’s pulmonologist gave us permission Thursday to remove her from the oxygen support (she no longer has to wear a low-flow nasal canula). Thank you, faithful and merciful Heavenly Father! The Lord continues to bless our daughter with His healing presence as she is coming ever closer to being made whole!
Alison turned nine-months old on May 7—it is truly amazing to see how far she has come in such a short time. What an amazing journey our family has been blessed with by the Lord. Thank you, Heavenly Father. Alison’s first birthday is growing ever nearer (it is August 7).
Sunday night, May 6, we were able to dedicate Alison to the Lord before our church family. What a tearful and memorable event it was for our family. My parents (Granddaddy and Grandmother) came down from Bossier City, and Stephanie’s parents (Pa Pere and Ma Mere) were there. Both sets of grandparents continue to thoroughly enjoy their first grandchild (a granddaughter no less) and her miraculous and ongoing recovery.
Stephanie’s dad continues to care for Alison during the work week. Stephanie’s mom helps whenever possible (she is still working as a nurse). What a tremendous blessing and resource they remain for Stephanie and me. Alison is now able to go to Stephanie’s parent’s home during the day (they even created a farm-themed nursery for her). We recognize this must be a tremendous relief to Stephanie’s dad (for several months, he willingly came to our home each work day because of Alison’s oxygen support equipment). The patience and love Stephanie’s parents continue to show her is evident in Alison’s smiling face and continued behavioral development. Please pray that the Lord would bless Stephanie’s parents for their continued sacrifice and support on our behalf.
My parents were able to come down the past two weekends to play with their granddaughter. In addition, my brother and sister-in-law were able to come down the first weekend my parents were here. It is amazing how unimportant Stephanie and I have become now that Alison is here. J My family clearly enjoyed their time with her and you could see how they wished we lived closer. We have not been able to go to Bossier City since before August 7 due to travel limitations imposed by her physicians (so my family has had to do all the traveling). Thankfully, the travel restrictions are beginning to be lifted—so we plan to make a trip to see my family soon.
Thursday, Stephanie and I were able to visit at length with Alison’s pulmonologist. He gave us a good report and said he wanted to remove her oxygen support to see what she was truly capable of. So far, her blood oxygenation levels have remained high (96-100 percent). Thank you, Lord. He also discontinued her home healthcare, two of her daily medications, and the preventative RSV shot she had been receiving on a monthly basis. He is pleased with her rate of growth, but remains concerned with her ongoing bouts with reflux (which can adversely affect her breathing ability when it is active). We discussed the possibility of surgery to help restrict the reflux, but Alison’s pulmonologist and gastroenterologist believe that she will outgrow the reflux (because she continues to chart her own course—more on that later). Please pray that the Lord would grant His strength and healing touch to Alison’s esophagus, lower esophageal sphincter (valve that keeps stomach contents from refluxing back into the esophagus), stomach, epiglottis (flap in the mouth that protects the trachea and lungs while eating), trachea, and lungs.
Alison’s pulmonologist and gastroenterologist have changed her formula three times, and her stomach acid neutralizer and reflux medicine twice, in an attempt to inhibit the reflux. She is currently on a special non-allergenic formula (because her pulmonologist thinks she may have a milk allergy—we are scheduled to meet with an allergist next week to conduct some initial tests). While Alison’s desire to eat and appetite have both improved, we have not seen a big change in the rate of reflux. In addition, she is no longer on breast milk (as an added precaution). Alison’s gastroenterologist will continue to monitor her progress, and some additional changes may become necessary. Short of the reflux, Alison is doing extremely well. Thank you, Lord. We have a happy, active and sweet baby girl! Please pray that the Lord would grant His healing to any potential allergies Alison may have. Please pray that the Lord would continue to guide Alison’s pulmonologist and gastroenterologist as they prescribe her method of care.
The full results of the tests that were run during Alison’s stay in the hospital finally came in. They conclusively show that she does not have a rare lymphatic disease. Thank you, merciful Lord! The tests did show that her esophagus, trachea, and lungs remain inflamed (the conclusion seems to be that the reflux remains the primary irritant—which at times causes her to aspirate fluid into her lungs). The inflammation is the primary reason Alison remained on the oxygen support as long as she did. Please pray that the Lord would grant His healing to any inflammation or complications from the reflux in Alison’s body.
Alison’s endocrinologist continues to monitor her progress and remains pleased with her progress. Thank you, Lord. Alison will remain under her care through her third birthday as an added precaution. The endocrinologist is trying to insure that Alison’s thyroid levels remain healthy to help protect her ongoing brain development.
Alison’s cardiologist dismissed her from his care during her last check-up. He was thoroughly pleased with her progress. Thank you, merciful Lord.
Alison’s OT/PT dismissed her from her care as well. She said that Alison’s motor skill development was on schedule (not only for her adjusted age [seven and one-half months], but her actual age [nine months]). Thank you, Lord. Her fine motor skills (hand control) have vastly improved since our last update. Alison is now sitting up without any assistance from us, she holds her own pacifier (constantly inserting and removing it from her mouth), and she is beginning to reach out to us when we go to pick her up. She is chewing on everything she can find (a precursor for cutting teeth). In addition, Alison is beginning to learn to push up on her hands and knees in an effort to crawl. Thank you, Lord. Please pray that the Lord would continue to bless Alison’s physical development and related motor skills.
We will see Alison’s pediatrician this Friday for her nine-month shots. We will see her endocrinologist next week to review her current blood work (regarding her thyroid). In early July, we will see her neurologist (she remains amazed at Alison’s neurological and physical development and clearly states that she is a miracle from the Lord). Please pray that the Lord would protect Alison from all viruses during our visits. Please pray that the Lord would continue to give her physicians special insight into her body.
A recurring theme we hear from Alison’s many specialists (including our early days in the NICU at Woman’s Hospital) is that Alison’s life and condition is a miracle, she continues to chart her own course in treatment and recovery, she defies their considerable experience and education, and she defies the current published literature and research. We believe that the Lord continues to ordain Alison’s recovery—as only He can. He is the Great Physician, and He has been more than merciful to our family. Yes, dear friends, the Lord is still in the miracle business! Praise God! Please trust Him with whatever heavy burdens you carry, for He is trustworthy.
If the Lord had chosen to preview our storm with us before it happened, and then asked if we were willing to walk into the storm—we would have honestly said, “No, Lord, for we are weak and scared.” Yet, with now having the blessing of hindsight, we would not trade our journey with our Heavenly Father for anything. As we have decreased, He has been faithful to increase—as He promised in the Bible. Our Heavenly Father knew that storm clouds were gathering over our family (unknown to us), and He lovingly put in place each and every resource and shelter that we would need to emerge unscathed throughout Alison’s storm. The Lord’s preparation and attention to detail have been awe-inspiring. What a merciful and mighty God we serve! The Lord may choose not to spare you from a particular storm in your life, but be confident that He will be faithful to carry you through that storm (the poem “Footprints” remains an inspiration to us). We need to learn that the storms (and valleys) are where we grow to understand the depth of the Lord’s love and concern for us. Thank you, Lord, for our storm with Alison. Thank you, Lord, for bringing us through this storm. Praise be to God alone!
I apologize for being so late with this update. Every time that I have tried to sit down and write this update, I have suffered from unending interruptions. It has been unusually difficult to write this update, and the only reason I can surmise is that the evil one has tried to postpone it. My intent remains to write an update (with pictures) every three-four weeks, but thankfully Alison grows stronger and stronger. Thank you, Lord.
We continue to thank the Lord daily for your friendship and prayers on behalf of our family—especially Alison. Your faithful prayers remain the cornerstone of why we believe the Lord has chosen to miraculously move in our daughter’s life (because our family will never be worthy of the mercy the Lord has shown us). We clearly recognize from our storm with Alison how much the Lord must love to hear His children willingly call out to Him in love and trust. Prayer is a truly powerful and mighty resource that the Lord has given us to approach His holy throne. Thank you for continuing to stand in the gap for our family—we will be forever grateful. We love you.
Blessings to you,
Langston, Stephanie and Alison
