BraveLarry! 80+ surgeries&counting!

$14,235 of $25k goal

Raised by 157 people in 37 months
Kathryn Doane Prout  HOWELL, MI


Please share Larry's story.  Thank you!

Our goal is to raise money for the care of Larry Jr.  Our son is having his 85th surgery Tuesday, (2/25/14).  He was born with multiple medical, physical and birth abnormalitites.  He has nearly died several times.  Our biggests expenses our medical bills, medical supplies, travel expenses and other expenses when frequently going to and from the hospital such as food, gas, etc.  There are also unusual expenses at home because I try to modify things here to help Larry out.  I do not work.  I take care of Larry Jr and my husband when he is sick.  Larry is home schooled for medical reasons.  He can't make it through a normal school day.  He gets too tired and he has failure to thrive because he just can't eat.  We have to keep an eye on him all the time.  Which isn't so bad, because he's pretty darn cute and funny.  Larry Sr is also ill with a progressive liver disease and is frequently hospitalized for surgeries, proecures and infections. 

Here is our story:

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 fulltime 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." 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 consultations with the "team" at University of Michigan, which consisted of pediatric, neurology, and urology surgeries, ObGyns, social workers, etc. It was determined that our girl was actually a boy--who we named Larry Jr. We were told, multi-times that now was the time to abort. "The window of opportunity," as one doctor said, "All the love in the world can't make up for grey matter." Meaning that our baby, if he made it to term would probably be born cognitively impaired or "mentally retarded" as the doctor so eloquently put it. My husband and I were shocked at this statement. The doctor herself had spina bifida. How could she not advocate for our unborn baby? Needless to say we told the team we did not want that particular doctor anymore. They were surprised, as she was a specialist in her area, world renown. That was one of the first times we learned that we had some power, that the doctors and surgeons weren't always right. Doctors that thought it best that we abort "it" before "it" was born because of how difficult life would be for us and "it" "“well, we would tell them that our baby's name is Larry, and he will decide if it's too hard to fight for his life. We were told 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.

Larry was born C-section. 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 in to. 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, 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 alot 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 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 NICU 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. One time they called us at 2 am to say we should come, he was doing very badly, and might not survive. 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. 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 85 surgeries thus far, blood infections, staff infections, pneumonia, failure to thrive, blood clots, etc. I don't work as I care for little Larry every day, and big Larry when his liver acts up.

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 an inside the liver and outside the liver level. 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 and in 2014 was added to the liver transplant list.  

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 occassionally 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. 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 eachother and to help others.  That is all I hope for my children.

Thank you for reading our story.  Thank you for helping if you can, for praying, for well wishing, wishing on stars....anything.
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Update 327
Posted by Kathryn Doane Prout
43 mins ago
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I really believe the only thing that keeps me going, is Bear. He has two goals. Helping people with special needs, and opening his own home for families with sick children at Mott to rest while they receive treatments and procedures. There is nothing fake or phoney about Bear. He does not ask or look for anything for himself. He doesn't expect to go anywhere or get anything. 15 years of being him. 15 years of pain, surgery, disease, infections, cancer, feeding issues, failure to thrive...over 30 different diagnosis. And he accepts life the way it is. The only two things he's ever really said that break me are: I hate my stupid legs.....will i ever be as big as my brothers? And....will I have friends? He loves everyone. Doesn't judge. Will be anyone's friend. Is more polite than anyone I know. Is never mean. Ever. Doesn't know how to be mean. He just wants friends. People of his own. We are in Iowa. We surprised his sister Katie with a visit. It was iowa or up north. H picked his Katie. Two days before we leave our car needs literally over 2000+ dollats in repairs. We have the most wonderful Mechanic. They tell us priorities, let us make payments. In the last windstorm, 63 shingles blew off our roof. Yes, i counted. Our roof is old and needs to be replaced. But the wind ripped it apart. It looked like a pop up book after. Like our roof had eyelashes with the shingles all up. We had bad medical news friday regarding his remaining testicle. I cant go into that now. Too much
We rented a car to go to Iowa. Living the high life here. We brought his baby chick. He rode in the back seat of a rented car with a chicken. Haplier than any kid out there on there spring break plane flight to the best of the best. All this pops in my mind as I watch Bear sleep. This is our spring break. You'd think we were going to Disney. His world is so simple. He is easily happy. He's riding in an awesome rental, he's got his Katie, and we're staying at a baymont on a shoestring budget. Yes we brought his little chick. Didn't want to leave it home. Currently chick is having a sleepover with Katie. Larry sr and I just had our free breakfast. We are smuggling some food for kate. Bear is getting his nutrition feeds. And we're on to explore Hawkeyes land.
I am stressed. Have been stressed for a couple weeks. But for the next couple of days we are going to enjoy our little spring break here. All for the Bear. To him you would think we were at a 5 star with all the amenities. Nothing gets him down. I want to be more like him. The kindest, nicest, bravest, most sincere boy I know.
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Update 326
Posted by Kathryn Doane Prout
16 days ago
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Day 7 of my migraine symptoms. I'm losing my mind. Never has a migraine lasted more than 2 days for me. How many days can you take tramadol before you are addicted. Or dead. Through my whole life, my migraines have lasted two days. The first day being the vision, numbness, speech slurring and then horrible headache symptoms. Day two being the crap day. Where if I cough sneeze bend over or look up feels like my brain hurts my skull. This is been going on for 7 days. The headache was only really bad Monday and Tuesday. Now it's just the symptoms the vision symptoms. It is so hard to see. It's like someone shined a bright bright light in my eyes and now I'm trying to focus after having been blinded by light. My lips are numb. And when I was trying to drive to Larry school I first pulled into the gas station, and the car wash, and the McDonald's, because I kept forgetting which driveway was the school. So if I'm frightening you don't worry I'm frightening myself.
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Update 325
Posted by Kathryn Doane Prout
28 days ago
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Please send all your positive energy to the bear today. He has three ultrasounds. One is his thyroid, Larry has Hashimoto's and they keep an eye on his thyroid. Two is his kidneys. Larry has one kidney larger than the other and it's overworked does most of the work. And the third is to check his other testicle, if you remember in 2015 he had testicular cancer, they remove the right one and got all of it. All of these tests are to make sure Larry is okay. So I don't want anyone to panic. We just want to have positive energy, vibes, and prayers so that Larry continues to be healthy. Thank you!
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Update 324
Posted by Kathryn Doane Prout
1 month ago
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Bear: "Is it okay if I give my friends my phone number from class?
Loser mom: "Well just don't give it out, wait til they ask.
Bear: "Can I just give it to my friends?"
Loser mom not getting it: "Sure Larry, if someone asks for it. Don't just hand out your number."
The most loving perfect Bear in the world: "Ever since I got my phone I show my friends, but no one asks."
OH GOD!!!!!
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$14,235 of $25k goal

Raised by 157 people in 37 months
Created February 23, 2014
Kathryn Doane Prout  
$50
Anonymous
1 month ago
$200
Anonymous
1 month ago
$200
Anonymous
2 months ago
BF
$100
Beard Farmer.com
2 months ago
$250
Anonymous
2 months ago
$50
Monica Rapp
3 months ago
$475
East Ann Arbor/ Taubman Infusion staff
3 months ago
AK
$20
Amanda Kosinski
3 months ago
$25
Anonymous
3 months ago
PS
$100
Paul Shonk
4 months ago
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