Finding the new normal

Finding a new normal is actually something quite common in the Cousins’ household.

Those of us with children with special needs know things change quite often, and we simply must adjust to do what we can for our young ones.

What’s unusual is the fact that we’re finding a new normal because of something good. J.P. is doing very well. He’s growing, and the backs of my wife and I are reaching their limits.

J.P. and Uncle Freddie
J.P. enjoys hanging out and learning from his uncle, Fred Royalty.

We were lucky to get help from Paige’s uncle, Fred Royalty, for the past two weeks. He flew to Central Florida after Paige was told to refrain from any lifting after suffering serious back pain.

Because of her back issue, we’re also working on getting some nursing assistance, as well as the installation of a ceiling lift.

Unfortunately, the nursing and lift aren’t in place yet, so we’re still dealing with having to do the lifting in the interim. My back has been holding up pretty well, and we’re hoping Paige’s back has had time to heal over the past two weeks.

Having Freddie in town was a huge blessing, and it was nice being able to spend some time getting to know him better. He was very helpful, and I know J.P. had a good time during his visit. Even just saying Freddie’s name now prompts a smile from J.P.

I’m so happy that J.P. is growing and thriving, but everything comes with a price, and there just don’t seem to be enough hours in the day anymore to get everything done.

There are things that simply must be done every day: Feedings, medications, laundry, school and therapy appointments. Karina must also be taken out, the floors have to be swept, dishes loaded, meals prepared, my job, etc.

J.P.'s physical therapy
J.P. gets stretched in physical therapy.

J.P. just had his reassessment for physical therapy. It was disheartening to see that his legs are worse than his previous assessment when it comes to how straight they should be.

It makes me feel like a failure. He needs to be wearing his Dyna-Splints every day, and it’s something that somehow doesn’t get done. We should probably be spending more time stretching his legs and arms. We should be getting him on his gait trainer. He did do better on that in this reassessment.

I really fear contractures, and I don’t want to look back some day and regret not making time for splints and stretching. We’re considering using botox injections again to help get his legs more flexible, and hopefully with that done, we can use the Dyna-Splints to make even more progress.

I’m also excited to share that I’ve updated the homepage at NavigatingLifesDetours.com. I hope everyone will check it out. If you haven’t already heard, there are nine chapters of the J.P. Story.

I have also updated the resources section with more links to the people and groups that have made a difference in J.P.’s life.

Jeff with Karina
Jeff and Karina after a trip to “hurry.”

Let me know if you have comments about the homepage.

One other reminder: We’ll be joining Canine Companions for Independence at their DogFest Walk ‘n Roll on Nov. 9, and we need more people to join Team J.P. at the event. If you can attend the event at UCF’s Memory Mall, please let me know. Donations to CCI are also appreciated. Please make sure to make them through our group page.

As always, thanks for your continued support of J.P. and my family.

The J.P. Story: Mixed blessings

J.P. is born

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 ninth chapter looks at how we learned of J.P.’s disabilities and the way doctors informed us of them. To start at the beginning of the story, click here.

Paige and I watched J.P. very closely during his first few months of life.

Throughout our pregnancy, I remember thinking that once he was born, our questions would be answered — and there were many questions.

Would J.P. survive? Would he know who we were? Would he understand his challenges? Would he walk, hear, see, etc.?

Somehow, I believed that once we got through birth and could lay eyes on him, we would know everything about what we were dealing with and what to expect in the future.

I was wrong, but that may not have been a bad thing as I look back at everything we were going through.

I asked many questions during J.P.’s initial hospital stay but was told we would just have to wait and see. It was frustrating to have such few answers.

One of J.P.’s doctors said to just enjoy and get to know him, and that at the time, he was just like all the other babies.

I had built a wall of protection around my heart, but that seemed to be falling down as I spent time with him, seeing his smiles and the wonder in his eyes.

J.P.’s eyes showed that he was there and understood who we were and seemed to know it was all OK.

To this day, J.P. is engaging and happy. When people are laughing in a room, he’s laughing, too. He has likes and dislikes, understands when he’s spoken to and seems to know a lot more than any of us do.

I wouldn’t have been able to enjoy those simple things had I known that he wouldn’t crawl, walk, talk or even be able to eat by mouth.

It would have been too soon to hear and devastating at a time when so many of us were rejoicing. It probably would have delayed the bond that needed to be built between my son and me.

I don’t believe anyone was holding back on providing the information I thought I wanted. It was simply a situation where the doctors and nurses didn’t know what J.P. would be capable of doing.

As far as I could tell, J.P. made eye contact, showed emotion, could move all of his extremities, swallowed and processed food and nutrition — and had quickly found a place in our hearts.

I was, obviously, over-simplifying things, but I believed at the time that if J.P. could move his legs, he would someday be able to crawl and walk. I was wrong about that.

I spent the next several months at home watching for any signs of J.P. rolling over or trying to pick things up. I listened intently for him to say mama or dad.

I thought I heard words a few times, and he did roll over at one point, but nothing consistent materialized from it.

Years later, I got to a point where I began wondering if J.P. would be as loving, patient and kind if he had all of the abilities of a typical child.

One thing is clear. He has made an impression on almost everyone he’s met and brings joy to all of us in ways that are difficult to comprehend.

Continue to Chapter 10: Growing family

The talented Mr. Royalty

J.P. and Uncle Freddie

Earlier this month, I posted about Paige’s back problems and inability to lift J.P. for the past few weeks.

Unfortunately, the problem caught us a bit off-guard. We have no lift in the house for J.P., and we have no nursing help or aide to assist with his care.

We’re fortunate though to have an amazing family and friends who are willing to lend us a hand, when needed.

Freddy visits
Paige, J.P. and I with Uncle Freddie.

In the past, my sister, Catherine Brandt, has dropped everything to be our lifesaver, and this time, it was Paige’s uncle, Fred Royalty.

With one phone call, Uncle Freddie agreed to fly from Kentucky to Florida to spend two weeks being J.P.’s assistant while Paige got her back in working order again.

I call him the talented Mr. Royalty because Freddie has had some incredible experiences in his life and has opened my eyes to many things since his arrival.

That’s one of the benefits of having family help out in a pinch: There’s plenty of time to chat and learn more about what others have told you over the years.

Freddie spent time in the military. He operated a Navy submarine, joined the Peace Corps, lived in Samoa and taught in Hawaii. He’s beyond creative and has created an official Team J.P. stamp during his stay — and created the first Team J.P. T-shirt.

I’m even now able to play a song on the ukulele that I never intended to learn.

One of Freddie’s biggest joys is eating. We’ve had sushi together during his stay and tried out a Turkish restaurant in town I’ve been meaning to get to for some time.

I’ve learned how to make real oatmeal — not the instant kind — and the many things you can do to oatmeal beyond fruit, maple syrup and brown sugar. We’ve even cooked bulgur.

I joked with Freddie this week that we could start a TV show called “Cooking Adventures with Freddie and Jeff.”

I found the eel you get at a sushi restaurant in an Oriental grocery in downtown Orlando and we cooked it for lunch and put it over bulgur with carrots, green onions, green pepper, celery and teriyaki sauce. It was amazing to us, but Paige didn’t even want to see us eat it.

I think Freddie has learned a lot about what it takes to keep J.P. going. He’s helped with baths, changing diapers, getting him dressed and into his wheelchair — and even some commands for our service dog, Karina.

Poolside with Freddie
Enjoying a moment poolside during Uncle Freddie’s visit.

When we’ve had time to just wind down, I’ve been sharing my DVD set with him of all the episodes of “Hogan’s Heroes.” I guess I’m teaching him a lesson in binge-watching, and we’ve laughed together at the antics of the characters.

We all run across numerous aunts and uncles from our extended families over the years, but many are the type that you just shake hands with and make small talk. Sometimes they get a Christmas card if you’re so inclined.

But since our wedding day, Freddie was the one who shook my hand, looked me in the eye and sincerely welcomed me to the family. I’ll never forget that moment, and I’ll never appreciate him more than now for being so selfless and putting his life on hold to help my family through a crisis.

The J.P. Story: Early steps

Baby J.P. in physical therapy

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 eighth chapter looks at how we got started on our journey with J.P. after being discharged from the hospital. To start at the beginning of the story, click here.

I remember those first few months of life with J.P. as being full of confusion.

Don’t get me wrong, I felt like I began to understand J.P. pretty quickly. Paige and I could pick out our son’s cry in a room of 10 babies or more.

We also knew when he was hungry, sleepy, hurting, etc.

It’s one of those built-in mechanisms that seems to kick in as soon as a child is born and specifically links parents to baby.

The confusion arose with services from the state and through insurance, how to get them and who would pay for them.

In the first weeks of J.P.’s life, Paige and I knew we needed to get started with therapy for him, especially physical, occupational and speech.

We heard other people talking about Part C and Early Steps. My thought was, “Part C? What about Parts A and B?”

It’s all part of the Individuals with Disabilities Education Act, which is a federal law that deals with how states and public agencies provide services for children with special needs.

The federal government provides money to the states to pay for therapies and intervention for children who qualify before they enroll in school.

Part C of IDEA tackles early intervention or the time before children with developmental delays enter school. The goal is to give them a head start at education and try to get them ready for enrollment in prekindergarten. Part B deals with special education in the school, and Part A deals with the general provisions of the law.

J.P. was able to receive therapy visits in our home. His therapists worked with him on sitting up, rolling over, getting up on all fours and preventing spasticity.

His occupational therapist worked on sensory integration, picking things up and manipulating them.

Paige with J.P.
Paige with J.P. at speech therapy with Debra Beckman.

We were very happy to gain the services of Debra Beckman for oral motor and speech therapy. Beckman is a nationally recognized therapist who has developed protocols used around the world. J.P. later appeared on a magazine cover with her.

Even after getting J.P. home, eating remained a struggle and took up more time than it should, especially when trying to get him to take his medicine.

I worried about J.P. not getting the amount of calories needed each day and therefore failing to gain weight and grow.

Paige and I knew the alternative was having a feeding tube placed and that just wasn’t an option for us.

Our family was all about eating, and we had plans for J.P. to be a part of that. My mother-in-law is a fabulous cook, and I couldn’t imagine my son not being able to enjoy her chocolate chip cookies and yummy cakes.

We pledged to do everything to get J.P. to eat by mouth, and we knew Beckman was the best person to get us where we needed to be to make that happen.

In addition to therapy at home, our physical therapist recommended enrolling J.P. in the youngster program at the Conductive Education Center of Orlando.

Conductive Education is the Hungarian equivalent to physical therapy in the United States, but it also incorporates elements of occupational therapy and the special education the students would receive in school.

It’s done in a group environment with a one-to-one ratio of students to assistants. Classes are small and led by a conductor.

A parent takes part in the Youngster Program with the child in order to learn the best ways to continue what is learned at class inside the home.

The classes are not covered by insurance, but families in Florida can choose Conductive Education instead of traditional school and use the McKay scholarship to help pay for tuition.

I was amazed at the positive attitudes of the conductors, and the way the children worked throughout the session to incorporate the skills they were learning in everything they did.

It’s like learning a second language. Isn’t the best way to learn by going somewhere where it’s the primary language spoken and immersing yourself in it?

The way the school was run and the people involved in the program impressed me so much that I joined the board of directors for several years and served as vice chairman. The place still has a special place in my heart.

For more information on the program, contact the Conductive Education Center of Orlando at 407-671-4687.

Continue to Chapter 9: Mixed blessings

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.

Continue to Chapter 8: Early steps

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

Cynthia Weirr

Create A Better Version Of Yourself

BeautyBeyondBones

Because we’re all recovering from something.

Trading Barbs With Barb

Irreverent Musings With A Message

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Cynthia Weirr

Create A Better Version Of Yourself

BeautyBeyondBones

Because we’re all recovering from something.

Trading Barbs With Barb

Irreverent Musings With A Message

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