I first met little Landon when he and his parents came into the office to discuss a vacant lot they were interested in purchasing. It was a chance meeting, actually. Patti and Dan were looking at a lot that was listed with X company when they noticed another one in the same subdivision that they liked even better. While strolling around on it, they noticed one of my signs lying in the ditch covered with leaves and called me. It wasn't my listing. The sign had been stolen from another property about a month before. They called me. With a little difficulty, I got all the information they needed and we all met at the office.
So, what is it that makes this family so special? In the few months that I have known them they have taught me incredible lessons, without even realizing it! I have learned preserverance, committment, compassion, trust, love, the list goes on and on. This is such a strong family and the bond between them is among the greatest I've ever seen.
I am trying to organize a fundraiser for this family and asked Patti to write me a story about Landon and his life. Before reading, grab a kleenex and settle in. To be only 16 months old, this boy sure has a story! This is what she wrote:
"Landon is the only son of Daniel and Patti Stouder. Mom's pregnancy was normal, so the family found out of all the medical problems after Landon was born. Landon was born at 37 weeks and that was only because they induced due to his head size of (15 ¼) and mom's borderline high blood pressure. He was born at lake Regional Hospital in Osage Beach Missouri. After trying to give birth to Landon for 18 hours between Doctor and parents it was decided that it was time to do a cesarean. Landon was in no distress but the delivery was not progressing. Landon was born with low blood sugar but with a little glucose water it came up to normal. Birth weight was 9lbs 12oz. The nursery attendants were very concerned about his breathing and called the Pediatrician in to evaluate him. Landon was retracting and breathing very rapidly. They also realized that the left side of his chest was larger then the right. Later his breathing eased and he was able to stay in the room with his parents. The next days after birth started to bare bad news but he was able to go home with Mom and Dad on the 3rd day of life. Leaving the hospital parents were informed that Landon had a large heart murmur, Hyposadis, and was a bit Jaundice. The Pediatrician set up an appointment with a Cardiologist and told parents that the murmur was probably just because of him being such a big baby.
The first appointment was just his routine newborn check up. That is when Patti expressed her concerns about the ridge going down the center of Landon's head with hard lumps on the top and that he was not eating much plus sleeping most all of the time. Patti was told that she was just being a paranoid mom and not to worry. After expressing still the uneasiness and concern again about knowing what the lumps were, they sent family to the hospital from skull x-rays. The next morning the nurse from the Pediatricians office called Mom, she asked if she was by herself and sitting down. She proceeded to tell Patti that Landon's skull was fused together and his brain had no room to grow, could result in death. Later that week the family went to see the Cardiologist and were told that Landon had a 3/8' hole in his ventricle and would need a surgical repair within 3 months. The Doctor prescribed a diacritic, heart med, and told family they needed to get his Jaundice checked out immediately . So now the family knew that their baby who was perfect in their eyes would have to have heart surgery, restricted brain growth and possible severely Jaundice. The next morning Landon was taken to get his Jaundice checked and it was dangerously high, so they emitted him to the ER and transferred him to Colombia Children's Hospital.
After the admitting evaluation the family was informed that surgery was needed much sooner than 3 months. As the next few days went by Landon's Jaundice was not getting much better. So the parents were unable to even hold him due to the need of the bilruben-lights and blanket he needed to treat the Jaundice. Landon was not eating so a feeding tube was put down his nose to give him proper nutrients. Landon was now 10 days old and had lost down to 8.5lbs. Plans are made to do surgery because Landon is now only fighting to survive and considered failure to thrive. The energy to breath and supply his body with oxygen is almost to much for Landon.
Landon's Jaundice is better now. But as each Doctor does their pre-op evaluation the decision of surgery grows sooner and finally at only 18 days old Landon underwent heart surgery. As they opened his tiny chest his heart began to fibulate and they shocked it with the paddles to bring back into a normal rhythm. The Thoracic Heart surgeon explain to Mom and Dad that Landon what much sicker than expected and if the surgery was not performed then, they could have lost him at any point. The surgeon also found that instead of 1 large VSD, he had 1 large VSD, 2 small VSD's, and a small ASD. The 3/8 VSD was patched and ASD was closed during surgery but the two smaller VSD's would close over time. In infants the sternum in sutured instead on wired and the incision is glued instead of sutured, so Landon's incision looked good, considering.
The incision was healing and but something just wasn't right. The look in Landon's eyes showed such pain and uneasiness. The nights got harder and harder to leave him until one night Landon got to coughing and his incision opened. The Surgeon said that it was best to re-open the entire wound so that they could clean it and it would heal at the same rate. So10 days after his initial heart surgery they scheduled a scar revision. But what the doctors thought would only be a minor scar revision, turn out to be the 1st day that we came close to losing Landon. His sternum had fell apart and was just laying on top of his heart. But this time the surgery was performed in the ICU room so no life saving or reviving equipment was on hand. Landon's heart was again fibulating then would drop off to nothing. The Doctor told Patti that an internal blood pressure was never lost, although at times no pulse was found. The surgeon and team worked on Landon for 8 hours, which seemed like an eternity. Dan was at work three hours away but once getting the call came to hospital to wait for the outcome. The surgical team would stabilize him and then something else would go wrong. From Landon's malnutrition the closure of his chest was so hard they had to wire his sternum up, down, and then across. To close his incision they had to pull all the extra skin and tissue to the middle of his chest and suture then staple it to keep it from re-opening. He remained in ICU and on the vent for close to 2 months before they tried to begin weaning him. During a lot of this time Mom and Dad were unable to touch Landon or even talk in the room because it would stimulate him. They had to keep Landon sedated so he wouldn't fight and cause himself more pain. When Landon was able to wean off the vent he had to get use to being held again because of the lack of interact for so long. He was trying to eat but was not able to take in enough so they kept the feeding tube to supplement what he wasn't taking in by mouth. Patti was with Landon almost day in and day out, so she learned the daily care that was going to be needed in order to take him home.
When Landon finally got to go home he had many medical attachments and devices. He went home with an external pacemaker, oxygen, feeding tube, and medicine port. (a Boravic) The family was offered nursing to help with care and relieve parents but the service did not work out. Parents, with Patti now being unable to return to work chose to take full care and responsibility of Landon. Landon was followed very closely so the family had several appointment every week or sometimes every two weeks. He was in and out of the hospital every two weeks for lung and other severe issues for months. The issues ranges from many pneumonia's to a collapsed lung. Other sickness that he was hospitalized from were a couple blood infections. The Doctor's could not explain the frequent respiratory illnesses, they always said it was due to how sick he was originally. Landon was being seen by every specialist that could possibly help him or make any suggestions in how to better his quality of life.
After consulting with a neuro surgeon parents found out that the ridging on top of Landon's head was called Sagatial Craniosynstosis. Yes it does cause restriction in brain growth but only left and right. The brain could still grow front to back. Landon's forehead was starting to protrude and his eyes started to look stretched. So after being highly recommended we chose to go to San Antonio for Landon's Strip Craniotomy. An organization called Angel Flight flew the family down to San Antonio. The Doctor who performed Landon's Strip Craniotomy invented the procedure, which is a less invasive way to remove the fused portion of the skull. The new procedure was the best know, around because the blood lost and recovery time was so minimal. Surgery went very well, but once again stuck on the vent and far from home. Landon's lungs were still having trouble clearing and it was believed that Landon had pneumonia again. The expected time parents had planned to be in San Antonio was a week including the time to fit and receive Landon's reshaping helmet. Combination of the helmet and rapid grow of an infants head in the 1st year are the keys to the new procedure. Two weeks later parents were able to take Landon from the hospital and get his helmet. In was Christmas time and the family was going to have to spend Landon's 1st Christmas away from home and their families. Through Angel Flight the family was not going to get to go home until after the holidays. But an individual brought plane tickets for the family for a Christmas gift, so on Christmas Eve they family flew home.
Landon's 1st winter he was in and out of the hospital for several respiratory issues. The family spent a lot of time apart. Then spring came and the Doctor's still had no explanation of why he was continuing to have lung problems. They started by testing Landon for Cystic Fibrous which was a huge fear in the family eyes, having that Landon had been in and out on the hospital so much already. But to the Doctor's surprise the test came back fine and not even close to questionable. So they decided the then step was to do a lung biopsy and test the tissue for toxins from his heart medicine. To limit the times of intubations and anasethia they combined the biopsy, a scar revision, and bronchial scope. The scar revision was for an abscess that had came up to the side of his heart surgery incision.. The scope was to see his airway and try to find more answers as well. But since Landon's first intubation the Anasethologist knew he was a tough intubation and during the procedure again they almost lost Landon. Landon started to code, so they had to do an emergency tracheotomy. Again this hospital stay was unplanned and ended up being an entire month. Patti and Dan had to learn how to care for Landon with the trach, changing of the trach and how to handle all emergency situations.
Again parents took full care of Landon once going home. Since the trach has been placed he has continued to have many infections and hospital stays. The results of the Lung biopsy were normal and due to the emergency tracheotomy they were unable to scope Landon's airway. The abscess turned out to be a suture that had been left from his heart surgery. After months of no explanations and the treating physician being unable to practice any longer, Landon's care was transferred to Children's Mercy Hospital in Kansas City, MO. Parents were tired of hearing that they had no answers or explanation for why or what was going to happen with Landon. Since the heart surgeon was not in practice no surgical produces could be preformed due to Landon still having Tachycardia. Parents did research and were going to take him to directly to Mayo Clinic in Rochester but decided to try Mercy first since it was closer to home. Even after Mercy resumed Landon's care he still had a few months of back to back hospital stays. Almost all the tests were repeated and through trail and error the ENT and PICU Doctors were able to find that Landon has Bronchial and Tracheal Myolsia. Which means that his airway is floppy/soft and when he get upset or sick it collapsed. Which now explains the frequent lung infections, Pneumonia's, and times of lack of Oxygen. But still after proper ventilation Landon continued to get sick, so in a cautionary sense the Doctors thought it would be in his best interest to hold all oral intake. Short term they put an NG Tube down his nose but then insert a Mikey. They now thought that Landon could be aspirating. So by laparoscopic they inserted a Mikey Button and done a fundoplation at the same time to prevent reflux. After surgery was completed the GI surgeon told parents that the surgery took longer due to Landon's oversized Liver. In the post-op evaluation a routine ultra sound has performed and it was found the surgery was successful and all nutrients would be given through the Mikey.
Since the Mikey has been placed and the lungs have been clearing up, due to proper ventilation Landon has been able to stay at home with only minor sicknesses. Landon still has his trach and is currently on a home vent to properly support his airway and give him the proper ventilation. Although he still has his Mikey, Landon is starting to practice eating to prepare for his swallow test coming up the first part of April. He is now starting to wean off the vent during the day. Now that Landon can be off the vent he is able to use his speaking valve and laughing out loud. No word yet but he is learn a lot of new sign language. Although his airway is still soft his last visit to ENT they were able to look down with a scoped and said his airway is getting much better. It still collapses but not completely. Since Landon has been able to stay health and no major sickness he can focus on his developmental progress. He is starting to walk with little help and ankle braces.
In June Landon is looking at a combination of the following surgical procedure; his Hypospadis repair, Bilateral Ear tubes, a Bronchial Scope, and a tissue biopsy of the trachea.
Landon is currently being followed by:
Cardiology for his Tachycardia.
ENT for Tracheal/Bronchial Myolasia, hearing, sinuses, and speech
Pulmonology for vent and lung care.
Ophthalmology for bilateral laziness of his eyes.
Urology for Hypospadis
Gastrology for GI bloating and possible food allergies
Radiology for routine Liver ultra sounds, swallow tests, and chest x-rays
Weekly the following therapies come to the house to work with Landon:
Occupational Therapy to work on fine and gross motor skills; hands and eye coordination and walking
Physical Therapy to work on gross motor skills; baring weight, sitting, and walking
Speech Therapy to work on feeding, vocalization, and communication with visual and hand signs
Developmental Therapy to help Landon to know how to react to disabilities and other children with special needs.
Landon has a daily routine of activities to help strengthen and help with his development. Through First Steps (Therapy Program) and the Insurance Company Landon has been provided with some equipment but is in need of much more to help him continue to progress in his development. After the age of 3 years old First Steps no longer with provide for Landon's needs so he will be the responsibility of the school system. The school has no way of providing equipment for every child so they each have to bring their own. Although Landon is progressing very well he still will not have the endurance to last all day at school without some equipment to help me be mobile. The family travels to KC every other week for an combination of appointment. Most of the time going up and back the same day, but sometimes having to stay overnight. With all the medical commitments the family still spends a lot of time apart. Landon is on a long list of meds for the above complications, but all seem to be helping him.
God blessed our lives with Landon and through him we will endure until the end!!! Daily he is growing and making improvements. Landon smiles even if he is having a bad day, his smile could brighten anyone's day.
Things have been hard but we wouldn't change a thing."
Every time I see or talk to this family, I learn something new. I look forward to a life long relationship with them.
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