Growing child leads to aching back

Couch on blocks

It’s been a tough couple of weeks in the Cousins’ household.

We’ve been dealing with a sick 19-year-old cat, and a wife with some serious back pain.

Not only is that bad for Paige, but consequently, I’m called to do more lifting, and then my back starts to hurt.

I had a problem with a bulging disc a few years ago and spent weeks in physical therapy.

I still remember the doctor telling me that Paige and I were fighting a losing battle with a growing child with special needs and back pain.

His advice was to do a two-person lift as much as possible and find a way to get help, so we didn’t have to do all the lifting ourselves.

I now totally expect that Paige is going to end up as a patient at the back doctor, and I’m going to be the primary lifter for some time to come.

There was one bit of good news this week: Since J.P. is on the Medicaid Home-Based Waiver, we can get assistance with putting a ceiling lift in our home.

We’ve spent several years trying to make that happen, but finally got funds for the project.

That means the installer can come to our house, check everything out and let our waiver coordinator know what the cost will be to complete the project.

It’s not a done deal yet, but after years trying to make it happen, it’s a significant step forward.

It’s difficult to have a child that can really do nothing on their own to help when it comes to getting around, especially when they try to throw their weight around while being moved.

The back doctor I saw even went so far as to say those back supports people wear at Home Depot or Lowe’s really don’t help when lifting people for that very reason.

In some ways, we’re a victim of our own success. Looking back at The J.P. Story reminds me of how touch-and-go things were through our pregnancy and the very real possibility that J.P. wasn’t going to live long.

Early in his life, he was given the failure to thrive diagnosis, and we wondered whether he would be able to eat enough to gain weight.

All of our answered prayers have now left us with a need for more help to make sure that we can continue to care for J.P. as he becomes a teenager in less than a year.

We’re thinking about what can be done. We’re going to try to raise our couch in order to minimize the bending when changing diapers and repositioning him. We’ll continue to try to avoid single-person lifts when Paige gets better, and we’ll look for some better furniture for him to use when he’s not in his wheelchair.

Despite the setbacks, it’s still an amazing blessing that J.P. is giving us these kinds of problems to deal with. I wouldn’t have it any other way.

We’ll continue to make accommodations to our home for him and will probably need a bathroom remodel in the next couple of years.

For now, as Paige said, does it mean we’re rednecks if we put our couch up on blocks? My sister told us it just might.

Cerebral palsy patient makes masterpieces

Paul Smith

I haven’t been this inspired in a long time, but a nursing home resident with cerebral palsy in Oregon has proven again that people with disabilities can do amazing things.

Mona Lisa

Paul Smith created an image of the Mona Lisa with his typewriter.

Paul Smith was diagnosed with cerebral palsy as a child. He was unable to care for himself and needed assistance to eat, clothe and even bathe himself.

But Smith found out early on that with just the use of a single finger he could do incredible things. At 15 years old, he began using a typewriter to create pictures.

It didn’t take long until he was creating masterpieces, including those of the Last Supper and a version of the Mona Lisa, but Smith said what he enjoyed most was creating art of the places he visited.

Smith never married and had no children. He continued his work for many years and his works adorned the walls of the retirement facility where he stayed.

However, Smith developed cataracts and his typewriter art ended in 2004. He died in 2007.

Even as the parent of a child with special needs, it’s sometimes difficult to believe this kind of work would be possible for someone with such a severe disability.

I often find myself wondering what my son, J.P., who suffers from holoprosencephaly, knows and understands. He impresses me simply by the fact that when you get out his backpack or wheelchair, he knows he’s going somewhere.

The Last Supper

Paul Smith created a version of The Last Supper on his typewriter.

When J.P.’s favorite show comes on TV, he smiles. When you say the name of his canine companion, he looks for her.

Hearing the story of Smith gives me a wonderful feeling of knowing that there’s more going on in J.P.’s mind then I probably realize. That makes me very happy, and it almost makes me want to put a typewriter in front of J.P. to see what happens.

I challenge anyone who reads this post to remember the things Smith has done the next time you see someone with a disability on the street, and instead of thinking of all the things we know they can’t do, ask yourself what they might be able to do if given the chance.

Silver Belle

Belle on mend

Many of you probably remember I started this blog back in May as J.P., Paige and I were preparing for our team training at Canine Companions for Independence.

We were blessed to be given a 2-year-old Labrador-golden retriever mix named Karina.

Karina at work

Karina helps us get J.P. ready for school.

Karina has adapted well into our family, but over the past few weeks, she has taken a back seat to one of our two 19-year-old cats, Belle.

I posted about our history with Belle and her sister, Ariel, several months ago after Karina joined the family.

About a month ago, Paige and I noticed Belle was losing weight and seemed to be having trouble getting around the house. It wasn’t getting better, so we took her to the veterinarian and learned after blood work that she had high kidney values and a dropping red blood cell count.

Even more troubling was that Belle had also fallen from 7 pounds to 5.5 pounds.

That’s not good news for any cat, but especially one that’s 19 years old.

I was given Ariel and Belle by a dear friend at WESH who was the proud owner of our cats’ brother, Fred. My friend’s sister is the owner of their mother, Candy Cane, who is 20 years old and still thriving.

Get-well wish from mom

Candy Cane, Ariel and Belle’s mother, sends a get-well wish.

There is longevity in the family, but a few weeks before Belle became ill, Fred passed away.

Belle was put on a steroid, and the veterinarian told us to take her home, feed her anything she would eat and bring her back to recheck her blood in a few weeks.

Belle has always been a big fan of chicken. When she was much younger, Paige and I sat down with a grilled chicken breast dinner at our coffee table, and before Paige could dig into her meal, Belle grabbed the chicken breast with her teeth and tried to make off with it.

Paige decided to get Belle some chicken at Chick-fil-A. We also moved the cat food into our main bedroom with a litter box.

It was the only way we could give the cats access to food at all times without Karina getting it.

Belle seemed to be doing better, and I took her back to the vet to repeat blood work and was asked how I felt she was doing. I told the vet she seemed better, but when she was weighed she was down to 5 pounds and her red blood cell count was lower. Her liver values were a bit better.

Since the liver values had improved a bit, the vet put Belle on a strong antibiotic, and we continued the steroid.

We finished the bottle of steroids over the weekend, and took Belle back to the vet on Tuesday.

There was better news with an improved red blood cell count and a weight gain of about a pound.

The vet said Belle may have had pancreatitis, and told us to keep watching her and bring her back if we have concerns. If not, we’ll repeat blood work at the beginning of the year.

For now, we’re happy she’s doing better, and J.P. still has his canine companion and two feline companions to keep him company as he starts fifth grade.

It’s a rare occasion when I’m more concerned about my cat’s health than my son’s, but Belle is currently the human equivalent of 94 years old.

I can only look ahead and be happy that Ariel and Belle’s mother is still around.

Family gathers for J.P.’s 12th birthday

J.P.'s 12th birthday

It’s hard to believe J.P. is 12 years old, especially as I’ve spent the past week telling the first part of The J.P. Story.

Writing about that incredible time has been enhanced by digging through photo albums, and recalling the amazing experience with Paige and other friends who have messaged me with their memories of the event.

It was a very special time that has only led to more special times during J.P.’s first 11 years.

The J.P. Story will continue, but it won’t be as chronological moving forward.

J.P. had a great 12th birthday surrounded by many of the people closest to him. I had hoped my dad and nephew would make it down from Missouri for the dog-themed party, but health issues arose that prevented the trip.

Birthday lunch

Barbecued ribs and green beans are part of the birthday menu.

My day began early as I made some delicious barbecued baby back ribs in our crock pot and a huge pot of green beans on the stove. There was also a homemade carrot cake that was quickly devoured.

We added some 4 Rivers takeout to round out the smorgasbord.

J.P. enjoyed having Paige’s parents and her sister’s family join us for the feast. J.P.’s cousins helped him blow out the candles on the birthday cake before he began opening his presents.

There were some cool educational toys he’ll use in school and plenty of new books and toothbrushes, which are two of his favorite things.

He also got a DVD copy of Disney’s “Frozen” which we quickly watched and hadn’t seen before.

The celebration continued throughout the weekend.

Karina at party

Karina is ready for her first birthday party with J.P.

We took J.P. to the library on Saturday. For a boy who enjoys books, it was a big treat for him. I lost count of how many books I read to him. It was also Karina’s first library visit.

We checked some books out for J.P. to enjoy over the next two weeks.

I was glad to have some time off work to spend with J.P. and our family. We are richly blessed with many people who have stood by us since J.P. was born and through his first dozen years.

We’re glad to have the addition of Karina, who will head back to Canine Companions this month for recertification. (I hope we haven’t broken her over the past four months.)

While bringing up a special-needs child can be an intense experience, there are plenty of moments filled with pure love and gratitude to him and many others who remain committed to help us navigate life’s detours in the years ahead.

Thanks everyone!

The J.P. Story: An incredible gift

Welcome home

Dad’s note: In honor of J.P.’s 12th birthday, I’m writing “The J.P. Story,” which looks back at our journey through birth and now approaching teen-hood. I hope you enjoy. The seventh chapter looks at J.P.’s discharge and the incredible ways our church helped us get prepared for life at home. To start at the beginning of the story, click here.

With discharge papers in hand, Paige, J.P. and I headed home to an incredible surprise awaiting us at our Lake Mary home.

Nursery

J.P. gets a nursery from our friends in Married Young Adult Ministry.

The Married Young Adult Ministry at Northland Church turned the guest room of our home into a beautiful nursery for J.P.

On top of spending a ton of time at the hospital keeping our spirits up, they also looked ahead and purchased what we would need at home, including a diaper-changing table and the all-important Diaper Genie.

Everything was assembled, put away and ready for J.P. when we walked through the door.

Paige’s parents provided a crib they had, but it was a huge undertaking, and my family is forever grateful to them for it.

We arrived home and took a deep breath as we knew we were beginning a whole new life that I still didn’t feel entirely prepared for.

I was somewhat nervous and even missed having a health professional at my beckon call when I didn’t know what to do next, but between the both of us, I guessed we would find our way or pick up the phone if something totally out of the ordinary happened.

Little Suzy's Zoo

The nursery was done in the theme of Little Suzy’s Zoo.

While we were in the hospital, we made arrangements to be placed in the care of Dr. Ben Guedes, a legendary Orlando pediatrician with a heart for children of a medically complex nature.

It’s amazing how many times we asked the question of who we should see after discharge and kept getting the same answer.

“Oh, you’ll definitely want Dr. Guedes.”

“Dr. Guedes is amazing.”

“You’ll love Dr. Guedes.”

Needless to say, he was highly recommended.

 

There was still a bit of trepidation about J.P.’s weight and making sure he was consuming enough calories in a day. It was probably the single biggest source of stress for me during those first days at home.

J.P. napping

J.P. takes a nap in October 2002.

We still had to give him several medications, so we would add it to a small amount of breast milk and then have a bigger bottle of plain breast milk waiting for him after the medicine.

There’s nothing like trying to reason with a weeks-old baby to get him to take his medicine. It still took too long to get the job done at times.

Northland Church had one more surprise for our family that I’ll never forget.

Since Paige never had a baby shower, the church congregation came together with a baby celebration. I believe there were a couple hundred people there, and everyone got the chance to meet our little miracle boy.

J.P.'s diaper-changing table

J.P.’s diaper-changing table was filled with supplies from our MYAM friends.

We received more gifts than we could ever imagine, proving again that God will provide to those who trust in him. There were clothes, diapers, supplies, photo frames, etc. It took several cars to get it all home, and we will be forever grateful to those who organized such a special event at an amazing time.

There was still a long road ahead, and many unanswered questions about J.P.’s long-range prognosis.

But Paige and I felt blessed to have a very supportive family, many friends and an amazing church standing behind us as we embarked on a journey we never expected to take with a wonderful son who was bringing us a lot of love.

Wealth of support

Family and friends gather for a photo just after hearing of J.P.’s birth.

 

The J.P. Story: Bottle battle

Feeding J.P.

Dad’s note: In honor of J.P.’s 12th birthday, I’m writing “The J.P. Story,” which looks back at our journey through birth and now approaching teen-hood. I hope you enjoy. The sixth chapter looks at J.P.’s eating struggle before discharge. To start at the beginning of the story, click here.

With J.P.’s shunt in place and his sodium level stabilized, attention turned toward making sure J.P. could eat and grow.

Because of the surgery, we were now residents of the neonatal intensive care unit, which meant fewer visitors and limitations on when we could enter and leave J.P.’s crib.

Day one

Paige and Jeff with J.P. on his first full day in the hospital.

I often said J.P. could have been the quarterback on the NICU football team. He was by far the biggest baby there at 8 pounds 4 ounces, but despite that, getting him to eat was becoming a chore.

It was a vicious cycle. J.P. had to consume a certain amount of breast milk to grow, but he didn’t seem all that interested in his job at hand.

To make things worse, he had to finish the bottle in a certain amount of time. If he didn’t complete the task, the nurses said he was using more calories to do the job then he would be gaining by eating.

Paige and I were getting frustrated. We simply wanted to take our boy home to Lake Mary.

All of the nurses seemed to have their own tips to try to get J.P. to eat, but despite our best efforts, he began to lose weight.

A Nasal-Gastric tube was inserted, so whatever he didn’t consume in the allotted time could just be put into his stomach.

It was a short-term solution, but we didn’t want to take J.P. home with a tube sticking out of his nose.

First photo

J.P.’s photo taken the day after he was born at Florida Hospital-Orlando.

The days dragged on, and the bottles seemed to get bigger. There were nights when we would be feeding him, look over, and he was asleep.

There were days when we he would start eating really well, and two minutes later, stop and be done — all under the pressure of the ticking clock.

I remember one time he was eating and the milk was going down his cheek. Paige said, “Jeff, he’s not drinking it,” and I said, “I don’t care. It’s no longer in the bottle.”

Not only did J.P. have to drink his milk, he also had to take his medicine. I felt like the cards were stacked against us, and I wondered if we would ever be home together as a family.

Meanwhile, our thoughts were also on what would happen when we did get discharged.

We didn’t have a nursery ready, but the bassinet that my sister, Catherine, and I used was at our house. My mother had it cleaned and readied for J.P.

Paige’s parents arranged to get the crib used by our niece, and our MYAM home group was also planning something big when we got our walking papers.

But before any of it would be needed, J.P. had to eat and get the NG tube removed.

It didn’t happen fast. We spent 19 days in the hospital recovering from J.P.’s surgery, monitoring his sodium level and making sure he was eating quickly enough to gain weight.

We came to know many of the nurses in the neonatal intensive care unit and developed a place in our heart for Florida Hospital for Children that has continued ever since.

While we were anxious to go home, I will say I was a bit apprehensive about not having a health professional by my side when J.P. made a strange noise or a weird jerk.

I wondered how I would know if he was OK without being on a heart monitor or I couldn’t look up and see his oxygen level.

As distressing as it was to be hospitalized, at least there was the feeling of knowing he was safe there and with people who were a whole lot more experienced in baby’s than I was.

I did get good at the whole bathing thing, swaddling and changing diapers, but I still dreaded the feeds — even when he did get to where he would eat. There were some medicines he just didn’t like, and they were the ones that were most important to keep in his system.

Being the parent of a child with special needs wasn’t going to be easy, but I knew Paige and I would learn what we needed to know, and we had a great hospital standing behind us if things got out of hand.

When we learned it was time to be discharged, Paige and I packed our bags and headed home to Lake Mary with our boy in tow.

We passed the NICU medical director, Dr. Eduardo Lugo, in the hallway and Paige said, “You can’t have him. He’s going home.”

Lugo laughed, and we departed for home, but we got a big surprise when we pulled in our driveway.

Continue to Chapter 7: An incredible gift

The J.P. Story: Back to surgery

The J.P. Story

Dad’s note: In honor of J.P.’s 12th birthday, I’m writing “The J.P. Story,” which looks back at our journey through birth and now approaching teen-hood. I hope you enjoy. The fifth chapter looks at J.P.’s first trip to the operating room. To start at the beginning of the story, click here.

The amount of blood work needed from J.P. increased with his diagnosis of diabetes insipidus, and Paige and I were just trying to learn how to feed him.

The lactation folks were assisting Paige with trying to get J.P. to latch on to her for his nutrition, and I was working on trying to get him to take a bottle. We learned neither way was going to be easy.

Our family and friends continued to visit us in the hospital, and the fact so many people were behind us through J.P.’s birth really helped to keep our spirits up as we dealt with the new diagnosis and feeding issues.

What we weren’t expecting was what we learned next: There was a problem inside J.P.’s head that had to be dealt with quickly.

Because of his brain malformation, the cerebrospinal fluid that travels through the brain and spine through a canal system wasn’t moving properly inside J.P.

Again, because of his diagnosis of holoprosencephaly — the fact that the brain didn’t form and divide properly in the womb — meant J.P. didn’t have that canal system most of us have, and the fluid was building up in his head.

The diagnosis given to people with this condition is hydrocephalus.

While the diabetes insipidus diagnosis was a relatively easy one to deal with, because we could just give him a pill and make things better, the new diagnosis would require brain surgery quickly.

It was a surprising and stunning moment that sent us back to our knees in prayer. I was worried about sending a newborn to brain surgery and knew nothing about the disease.

It was time to activate the J.P. Hotline again and seek prayer from our wonderful group of friends and family.

I think the hardest part for me was that I felt like I led all of these people down a path with us through the pregnancy and birth, sharing such a joyous moment with them and now had to admit that the miracle we had all been celebrating came with a catch.

Our neonatologist, Dr. Winslade Bowen, filled us in on what hydrocephalus was, and we looked at images inside J.P.’s brain. He showed us how the fluid was building up and said he was seeking a pediatric neurosurgeon to get things taken care of as soon as possible.

Bowen was able to get in touch with Dr. Jogi Pattisapu, a pediatric neurosurgeon in Orlando who is world-renowned and a leader in research into hydrocephalus.

I knew God was involved and watching over us because Pattisapu was available on Labor Day to do the surgery. He amazed me with his interest in our case, as well as his knowledge and compassion, which isn’t big among surgeons.

Bowen and Pattisapu really put our minds at ease despite the description of drilling into my newborn boy’s skull and implanting a shunt to drain cerebrospinal fluid to his abdominal cavity so it can be dispersed through his body.

To this day, things still seem to be a blur between meeting Pattisapu and the day of surgery.

I learned a lot about things I never wanted to have to do again but figured I probably would as the parent of a child with special needs.

There was the moment when we had to go to pre-op holding and get asked a million questions about our 3-day-old baby. I felt like I still barely knew him.

There was the moment when we had to say goodbye to J.P. and watch him be wheeled back to surgery. It’s heartbreaking.

But my favorite — yes, I’m being sarcastic — is the surgical waiting room. I believe it’s the closest thing on Earth to hell as you wait for who knows how long for word on your loved one and feel totally powerless to do anything but read old magazines that you can’t begin to concentrate on or even understand.

I think we were pretty lucky that J.P.’s surgery moved quickly and was without complications. Pattisapu immediately came and gave Paige and I hugs and told us our baby was a trooper.

We had made it over another hurdle and were on the road to recovery. Unfortunately, the fact J.P. did require surgery meant a move to the neonatal intensive care unit we had hoped to avoid, and we wouldn’t be discharged anytime soon.

Continue to Chapter 6: Bottle battle