Please share Larry's story. Thank you!
Here is our story:
Larry Jr “Bear”
Last update: 9/30/17
My husband and I have spent a lot of time at the best children's hospital in Michigan. We have met amazing parents, nurses, surgeons and hospital staff. The doctors and nurses at U of M have kept our son alive.
It began in 2001. Larry and I had been married 14 years. We wanted one more baby. We had 5 children already, ranging in age from 13 to 4. Girls at the beginning and end, and boys in the middle. Larry had just finished getting his degree in Special Education and I was home full time with our children.
Right from the beginning of the pregnancy, I knew something was up. I was really in the best shape I'd been in a while. I just had this feeling I couldn't explain. I talked with my ObGyn who told me, "Oh it's your age." (I was 35) But I just knew from the beginning, something was going on with this baby.
February, 2001 at 20 weeks I had an ultrasound. I'd gone to all of our other children's ultrasounds alone. Larry was either in school or working. Ultrasounds were always fast and the tech never said anything. I'd be in and out and that was that. Larry and I went together for this ultrasound.
The ultrasound took 45 minutes and the technician was so nice. I said to my husband "Honest, usually they are so quick! This is really cool! She's so nice!" The tech talked, and told us what she was seeing. She said "It's a girl!" After she was finished she gathered some things up and said for us to wait, that she'd be right back. My husband has said he knew just by the way she kept measuring some of the same areas, and by how her face looked that something was wrong. Despite my feelings throughout the pregnancy, I had no clue at all.
Then she came back in the room with my ObGyn. "Hi!" I said. "Wow, I know it's been 4 years since I had my last child, but this is cool! Doctors come to ultrasounds now! This is nice!"
He said, "Well we don't normally come to ultrasounds, and this isn't good news. And I'm just going to tell you what's wrong."
I didn't make a sound. Didn't interrupt, as he told us that our baby had multiple problems. Our baby had so many problems that I would have to continue with my care at the University of Michigan. He said spina bifidia showed as well as many other complications.
I just wound up and sobbed. Wracking, loud, grief ridden, sobs. I said, "Is it because I didn't take the vitamins with folic acid? Did I do this?"
A few days prior to the ultrasound, a friend had asked me if I took the prenatal vitamins. "No," I said. "They make me sick."
"But Kathy, they prevent spina bifida!!!"
It doesn't matter what the doctor said, or my husband by way of reassuring me, I've always carried this guilt. I know, in my brain, that this isn't the case. But those words from my friend kept echoing in my head.
The time period from 20 weeks gestation to term is a blur of weekly ultrasounds, amnios, tests, and private consultations with the what we would from then on refer to as, "The Team" at University of Michigan Mott Children's Hospital. The team consisted of pediatric surgery, pediatric neurology, and pediatric urology surgery clinics, ObGyns, social workers, etc. It was determined that our girl was actually a boy--who we named Larry Jr. We were educated, cared for and treated with dignity and so much respect. We had doctors we had never met before, calling us at our home to talk and basically counsel. I remember multiple times speaking to Dr Park, of Pediatric Urology Surgery, and crying, just crying my heart out on the phone to him, as he would calmly answer my questions and give me information. I remember going to Dr. Hirschl's clinic when I was huge and pregnant to learn about babies who were like Larry Jr. We were told then that he may not survive gestation let alone birth.
At some point during all of this we sat our five children down on the couch and explained to them what was going on with their unborn baby brother. After Larry and I talked with them about what could or may happen with their brother as he struggled to survive, we asked what they thought. One of them spoke up and said, "We'd rather have a special needs brother than have him die." To this the other four children nodded and agreed. That was it. It was so simple to them.
His brothers and sisters have nicknamed him “Bear.” It started out as a rhyme to Larry…. “Larr-Bear” is what I called him when I would hold him as a baby. Soon it became their name for him because he is a strong, fierce survivor. Their Might Bear! Or Bear Man!!
Larry was born C-section at University of Michigan's Holden Hospital. He made it through one of the first hurdles of his life. "Birth." Larry was born with spina bifida. Spina bifida is a birth defect that affects the lower back and sometimes, the spinal cord. The kind he has is called mylocystocele and caused him to have a hole from all around his sternum and rib cage to his rectum. All of his organs were out. This hole is called a giant omphalocele. An omphalocele is a type of abdominal wall defect in which the intestines, liver and occasionally other organs remain outside of the abdomen. Ompahloceles occur in 1 out of 5,000 births and is associated with a high rate of mortality. With most O's, children's organs are out through a small hole and can be pushed back in with a few surgeries and sewed closed. Larry had no skin at all to put the organs back into. He looked like road kill. Like something that had been hit by a semi. He also was born with cloacal extrophy, which is a severe birth defect where much of the abdominal organs, the bladder and intestines, are exposed. In Larry's case it also caused the splitting of his male genitalia, and his anus was sealed. It is an extremely rare birth defect occurring in one in 200,000 pregnancies and one in 400,000 live births. Larry was split at his pelvis, he had a 14cm gap where his pubic bone should have been. He had no stomach muscles at all and no colon and eventually lost his bladder. Larry also was diagnosed with short gut syndrome which is a malabsorption disorder caused by the complete dysfunction of his bowel.
During the first 6 hours of Larry's life there were a lot of discussions and meetings with our team of doctors on how to proceed with Larry. As one of the surgeons put it, "You don't see your son's condition a lot here or anywhere." Many seasoned doctors came to see Larry and look and learn. Residents and Fellows also came to see Larry, sometimes to help sometimes to learn from and see Larry's condition because it was rare. Our priest came up to the NICU to baptize Larry. His blood pressure continued to drop in that first week, even after medications were given. It looked like the doctors were right. Larry wasn't going to survive after birth.
The first time I was allowed to see Larry in the Holden NICU at U of M, I was still on the recovery bed from having had the C-section. They were wheeling me to my room and detoured through the NICU. He was beautiful. He looked like our son John. His dark hair and nose were definitely John. (As he became older he became Mike's twin.) I reached out and rubbed his little foot. That was all I could do. He was covered with plastic on his belly area, tubes coming out his nose, mouth, arms and legs.
My husband has always been able to laugh in the face of stress and trouble. Big Larry approached Little Larry's bedside, looked down and laughed. He said how crazy this little baby looked with all those lines and wires hooked up to him covered in plastic. My husband then became serious, bent down over Larry's NICU crib and said, "Larry, I can understand if this is going to be too much for you and you don't think you can do this, but I can tell you if you can keep fighting, Mom and I will never leave your side. You will have a life where you will always be loved. You have 3 brothers and 2 sisters that can't wait to play with you."
Larry kept struggling through the night. My husband and I took our shifts by his bedside. As the morning came Larry's blood pressure became stable. His nurses smiled as they gave us the news. It seemed Larry had made his decision to stay and fight.
Larry was in MOTT Holden's NICU at University of Michigan for 6 months. It was rough. We almost lost him several times. We would spend the entire day with him, and go home at night as parents are not allowed to stay the night in the NICU, to care for our children at home. The doctor's and nurses kept up constant contact with us. Dr. Hirschl, Dr. Garton and Dr Park, and also Dr Farley who eventually joined "The Team", were all frequently in and out of NICU assessing Larry, caring for him, performing those first early surgeries, and always, always keeping the flow of parent to child to doctor to parent to child, round and round, communication wide open. One time they called us at 2 am to say we should come, he was doing very badly, and might not survive. We left our oldest Katie, 13 at the time in charge, and raced to the NICU to be with him. Several times while in the NICU he nearly died. It was so horrible trying to get to MOTT not knowing if he'd still be breathing.
I didn't hold Larry Jr. until his one month birthday as the doctors wouldn't allow it. I remember that one month birthday, I was so sad. So broken. When your child is sick, when you don't know if they will live or die, it breaks you in half. I went in on the one month birthday and his nurse Laurie said, "Oh forget this, you want to hold him? You can hold him!" And she put him in my arms. He had 13 little lines of tubing, was on the vent, with the giant hole in his belly all bandaged, and I held him oh so carefully. And I got to hold him once a day, every day after.
Our family's focus has been little Larry since the day of his birth. He has had 100 surgeries thus far, blood infections, staff infections, pneumonia, failure to thrive, blood clots, testicular cancer, spinal cord untethering and spinal fusion, etc. I don't work as I care for little Larry every day, and big Larry when his liver acts up.
Now----Larry Sr is also ill. He had his colon removed in 2005 as a result of having ulcerative colitis for 20 years. He went into liver failure in 2009 and was diagnosed with primary sclerosing cholangitis, a liver disease. Primary sclerosing cholangitis (PSC) is a disease of the bile ducts that causes inflammation and subsequent obstruction of bile ducts both at and inside the liver and outside the liver. The inflammation impedes the flow of bile to the gut, which can ultimately lead to cirrhosis of the liver, liver failure and liver cancer. The underlying cause of the inflammation is believed to be autoimmunity and more than 80% of those with PSC have ulcerative colitis. The definitive treatment is liver transplantation. Larry Sr is under constant care of the GI team and transplant team at U of M. He has frequent liver infections and gets very ill turning school bus yellow. He has had 3 blood clots. He has stints in his liver, occasionally has a tube placed in his chest the doctors use to access his liver, and the bottom 1/3 of his liver is hard..or dead.
When Larry Sr initially went into liver failure in 2009, he was at a hospital in Ypsilanti. He was getting sicker, and sicker, and sicker. He was yellow. His skin, his eyeballs, were the grossest color of yellow. Vomiting. Septic and delirious. Extremely high fever. I was giving up on the doctors there. I did something, and it is not the first time I did this, nor would it be the last. I contact Dr Hirschl, Larry Jr's pediatric surgeon via email and explained to him my husband's medical history and his current condition. His email back was simple... "Sounds like PSC. He should be at U of M. I'll contact a colleague of mine, Dr Volk, and arrange for an ambulance to get him over here." And that is exactly what he did. The hospital my husband was at did not know what to do with him and I know he was dying. University of Michigan, because of Dr. Hirschl, saved him. I found out later that Dr. Hirschl was not even in the country when he answered my email and orchestrated my husband's life saving care. I will forever be grateful. I don't know if this was okay. I don't want to make any waves by having done that. But I had no choice. And I know he saved Larry Sr. As he and the other surgeons have saved Larry Jr multiple times.
I have been taught wound, pic-line and port care, and the running of antibiotics and TPN (IV nutrition) at home. Ostomy care, lovenox injections for clots, how to operate a wound vac. Trach care, running the oxygen machine and suction machine for little Larry's trach. Feeding my son through a tube in his belly. I can insert his nasal gastric tube through his nostril to his belly. Something I hate doing, but occasionally need to do to help Larry Jr in weight gain. I will and have learned anything I can so that my husband and son can spend more time recovering at home than in the hospital.
Our lives took a turn when little Larry was born. I'd like to think for the better. Because of little Larry, our children are better people. They gave up so much of their childhoods and their lives for their brother and their dad. They have given up "things" that most kids get. They have become selfless, giving individuals. They know that life is not always what it seems and that judging others is not the way to go. They have empathy for others. I will always praise them and be grateful and proud of them for this. Family, and being there for each other, no matter what, is more important than anything. And that is my number one goal, the number one thing I want to pass on to my child. For them to be there for each other and to help others. That is all I hope for my children.
In the last 16 years since little Larry's birth, we have raised 5 other children who are all older than Larry Jr. Katie graduated from Kalamazoo College in 2009 and attends the University of Iowa on a full scholarship in their non fiction creative writing program. Steven is a graduate of Eastern Michigan University and is currently working in Detroit with the Local 58. John is in the United States Navy has been on two deployments to the Persian Gulf and North Korea, and will be leaving soon for the third deployment. He married Stephanie, who we all love, in 2015. Michael recently was accepted into the Local 58 electrical apprenticeship program. And Wee Molly, who came with me every day to U of M for that first year Larry Jr was mostly in the hospital (6 months in NICU) and used to stand next to his little bed singing to him, has completed 2 years of college and is just starting out life as an adult.
When you have a child who has spent the majority of his life having medical issues or in the hospital, and is in a large family, the family is not just dealing with their sick child. And our family is not perfect. We have faced struggles while raising our older children. Just like any family.
We have a family that has 5 older children who have their own lives. “Normal issues”. Teen years, good grades in school, not so good grades sometimes, kids doing wonderful things, kids acting up and doing the normal teen things that make my husband and I want to knock their heads together. Getting the older kids to sports practices, dance lessons, attending their events, celebrating accomplishments and graduations and weddings. We’ve done a lot of juggling. All the things families go through, we go through too.
Our family is large. We are busy. Our older children have spent the last 16 years of their lives helping us care for Larry Jr. We trust them with his care as much as we trust ourselves and his nurses. We have had huge setbacks medically with both little Larry and big Larry. Our children adore little Larry and big Larry and would do anything for them
Without the help of the nurses...... Without the help of Dr Hirschl, Dr Park, Dr Garton, Dr Farley and all the staff.... Without the Fellows, the residents---We never would have been able to take care of Larry’s medical needs at home as we have. There were times over the years when little Larry had been in the hospital and so had big Larry at the same time. They would be having procedures done at the same time. Both of them sick and hospitalized at the same time at the opposite ends of U of M. The hospital staff has helped us deal and cope with the craziness of those situations. They have stepped up to make sure we have had everything we need, have all the information and training we need, that at-home-nursing visits are covered, we have medical supplies, and most of all that we are comfortable and confident with whatever medical care we have to do at home.
Larry is homeschooled for his core academics and attends public school for electives. He is all over the map academically. He is grade level in reading, but below grade level in math and other subjects. This is due to the fact that he has spent so much time either in the hospital or at home recovering. He attends public school for electives and to hopefully make friends. The children at school are very nice to Larry Jr. They always say hello! Larry is so nice. He is so tiny. He looks more like a 10-year-old than a 16-year-old.
Larry’s world has been very “small” over the years. ----Meaning his childhood development was so different than our other 5 children. Larry missed so many childhood milestones such as learning to nurse or take a bottle, due to his medical condition. Nursing or drinking from a bottle leads to eating. Until he was 15 Larry had some sort of feeding tube either in his stomach or his nose which gave him his primary source of nutrition. He now drinks BOOST as his primary food source.
From 0-9years of age he couldn’t walk or stand. Neither could Larry crawl as an infant or walk around as a toddler and investigate his environment and learn as most children do. Larry learned to walk at age 9, he became a little less dependent on others but always needed so much support. So Larry’s learning was much different from his siblings from day one.
Socially, Larry interacted mostly with his older siblings and medical staff. There were no playdates with other kids his age, attending sleep overs, birthday parties or attending school on a regular basis to learn how to interact socially with his peers. Even though Larry is liked at school, children are kind and say hello, he didn’t get invited to birthday parties or sleepovers. He never had a best friend or a close group of friends like his siblings. It wasn’t until Larry was about 13 that we realized that he thought that all people were put together at the hospital like he was. Larry asked Larry Sr: “When did the doctors finish putting you together Dad?” It was then we really realized there were a lot of things that Larry didn’t understand that most people understood by having a “normal childhood.”
When the University of Michigan football team played Florida in Texas, on the day of the game, Larry’s mom suggested that Larry text his friend John O’korn and let John know that Larry was thinking of John, and even though Larry couldn’t be at the game, that Larry would be there “In Spirit.” Larry responded to his mom, “But mom, I’m not dead yet.”
Larry takes things very literally, he keeps us on our toes, we often assume he may understand all of the inner workings of social conversations, but often he doesn’t. If you have a trusting relationship with Larry as his family does, he will often laugh at himself when he understands he has a misinterpretation of things. We use a lot of humor with Larry to help him learn. We are also careful with this. We know he is very self-conscious and will sometimes ask: “Am I smart?” or “Do I look weird to you?” or “Why am I different from other kids?” He wants so much to be tall like his brothers, or to be athletic. He has expressed how sad he is that he is so small.
He has had to deal with the inappropriate comments or stares from others. He handles this well. I am not kidding when I tell you that at least 5 times, for some reason—always in a grocery store---little old women come straight up to Larry Jr and I as we shop, pat him on the head and say “Oh I am sorry, when will he die?” Or some version of that really inappropriate statement. Completely freaking Larry Jr out.
I really believe that this generation of kids is more accepting and loving of people with disabilities. This has been evidenced to us especially since he entered high school, but even more so in the last couple of months by the incredible kindness and love the Pinckney High School students and football team and given Larry Jr. They sent him over 100 cards when he had his 100th surgery. These cards were beautiful, meaningful, and very heart warming. They elected him Sophomore Homecoming King!!!
Most of Larry’s brothers and sisters moved out around the same time. Larry was so incredibly lonely. Although the children at school are nice and care for him, he doesn’t have similar bonds with them as he does with his siblings.
In the fall of 2016 Larry Jr became a member of the U of M football team. This could not have come at a better time, as he was missing his older siblings terribly. Larry had been a Wolverine since birth, having been born at U of M—and was now on the team!! A nonprofit called Team Impact which matches up chronically ill children with sports teams, connected Larry to the University of Michigan’s football team. He met John O’Korn in April of 2016. The moment Larry became a Michigan Wolverine, Larry’s life started to change. It wasn’t long before Larry had the cell phone numbers to a few players. He started to text some of the players, go to games and drop off cookies for the players at Schembechler Hall. As the football season came and went, Larry stayed connected to his Wolverine friends and continues to do so throughout this season. Larry’s small world became much larger. We could see Larry’s social skills improving along with his self-esteem!
Larry is a part of 4H, shows his chicken and pigeons at the local fair and participates in therapeutic horseback riding. He is on the Mott Hospital Teen Advisory Committee and helps make decisions, and gives advice to help children and teens like him. He volunteers with the Arc of Livingston, a non profit organization which supports people with disabilities. He has been to many fundraisers as a guest and made speeches about his life at these fundraisers. Some are Team Impact, The Ann Arbor Center for Independent Living, The Arc of Livingston, Special Olympics, Kiwanis, Mott Hospital on several occasions, too name only a few.
Larry wants to write a children's story to help kids with coping techniques. Larry has phenomenal coping techniques. He is never a “brat” or “out of control” at the hospital even through the most painful of situations. His coping techniques help him get through some very tough situations are: 1) stay calm, 2) stay quiet, 3) stay still, 4) breath slowly, and 5) always, always say thank you to the nurses. And in the case of blood draws or IV pokes---If the staff member can't find a vein it is “One and done” meaning get someone else. Or “3 strikes you’re out!”, again meaning get someone else---depending on situation and the confidence and experience of staff member. Larry, with the help of the Arc of Livingston, is learning to speak up and advocate for himself. He is not cognitively impaired, but is very, very developmentally delayed. One important characteristic he has, which we have always stressed is important for all children to exhibit, is—no matter what the situation is---stay polite and classy. Don't lose it.
Well this is Larry's story. I update it and change it periodically. There is really so much not written here. I have kept a journal since 2003. Someday—maybe I will try and publish it. We will see.