Navigating Life's Detours
Finding the right path for a teen with special needs
Pushing for family-centered hospital care
Anyone who knows me will tell you I’m passionate about two things in life: My family and the care my son receives at Florida Hospital for Children in Orlando.
We spend a great deal of time at the hospital — both inpatient and outpatient — enough so that I was asked to join the Family Advisory Council several years ago.
What struck me immediately about being on the committee was the responsiveness of the hospital to our recommendations — as well as the way they sought us out with questions about changes and care.
While serving on the council, I’ve had opportunities to talk to hospital leaders, assist them with getting national awards, attend hospital summits and play a key role on councils.
I’ve served on the Nursing Governance Council and more recently joined the Patient Safety and Quality Committee.
What I’ve seen in my work at the hospital is a continuous desire to improve care and be sure families play a major role in the decisions about the patients.
The staff has the utmost dedication to the children and teenagers being treated at the hospital, and it’s all done with the leadership of Marla Silliman, the hospital’s senior executive officer, who is truly inspiring to the staff.
At quarterly town-hall meetings of the hospital staff, Silliman meets with large groups of employees over several days to make sure everyone hears the latest news about the hospital, its goals, changes and a review of performance. She has the ability to inspire and make those who work at the hospital really strive for perfection, which is vital in the healthcare field.
Silliman will sit down with the members of the Family Advisory Council for a second time Monday. We’ll enjoy dinner together, and I’m sure she’ll bring that innate ability to inspire to our group, as well.
I’m humbled and grateful that she makes the time to join us, and it just shows that the push for family-centered care goes right to the top of the hospital administration.
It’s another reason why Florida Hospital was chosen by U.S. News and World Report as the No. 1 hospital in the state of Florida and why Florida Hospital for Children was the first pediatric hospital in Orlando to achieve magnet status.
It puts my mind and heart at ease every time J.P. requires medical care.
The J.P. Story: Growing family
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 10th chapter looks at how our extended family dealt with simultaneous pregnancies. To start at the beginning of the story, click here.
Shortly after we learned of our pregnancy and J.P.’s diagnosis, we got another surprise.
Paige’s sister was also pregnant.
It was an exciting time for both of them. There was the proverbial photo of both sisters with their baby bumps, and there was a surprise with both pregnancies.
Paige’s sister was pregnant with twins. While it was a double blessing, it was still a surprise and something that wasn’t in their financial plan.
The twin boys were both healthy and born six weeks after J.P. at Florida Hospital in Winter Park.
Family get-togethers forever changed after the births of the three boys. the adult things we enjoyed, like taking naps, reading newspapers or watching sports on TV after dinner became changing diapers, eating in shifts and burping the babies.
It was a new world for all of us, and it actually gave us a gauge to determine where J.P. should be developmentally by seeing what the twins were doing.
Because of J.P.’s holoprosencephaly, the twins quickly surpassed J.P. when it came to making those milestones, and that’s when it started to sink in that the miracle birth we had witnessed on Aug. 30 wasn’t going to mean our son would be a typical child.
We witnessed the twins play with toys, pull themselves up with the help of tables and chairs and begin mimicking the sounds they heard other people make. They reached for things they saw us holding and sometimes got into it with each other.
For Paige and I, seeing the twins doing all these things was fascinating — and, of course, difficult at times.
J.P. could talk, but he wasn’t forming words. We heard him say, “Boo” first, and he said “Mama,” but we weren’t sure if he was just making noises or meant something by it.
J.P. wasn’t sitting up, rolling over, picking things up or crawling. He would bat at toys and really enjoyed this one music box he was given. He was also a big fan of “Sesame Street” and Elmo.
It’s like our family, Paige, J.P. and I, and Paige’s sister’s family had traveled together down pregnancy highway and had now reached a fork in the road, and we wouldn’t be traveling together anymore.
Their journey would include bikes, sports, homework and science projects. Ours would include doctor visits, wheelchairs and service dogs.
While our journeys would be filled with different experiences, it didn’t mean we couldn’t learn from each other. It’s been exciting to watch the twins grow up. J.P. has gone trick-or-treating with them, and they always help him blow out the candles on his birthday cakes.
We’ve taken J.P. to watch their Saturday morning basketball games and enjoyed weekends together poolside.
As the twins continue their journey through school, they’re completing science projects, exams and writing assignments.
One of them had to write a paper on what they would ask for if granted one wish.
What was written is something I’ll never forget. It was about J.P., and the wish would be for healing, because J.P. could then go to school with them and play sports with them on their teams.
Sometimes I think I’m in a bubble with my struggles when it comes to wishing J.P. was healthy, but I’m then reminded that I’m not in this alone, and to find out a 12-year-old feels the same way I do is oddly comforting.
I only wish I could grant that wish for so many reasons.
Who knows. Some day, one of J.P.’s cousins could end up being his guardian if he outlives Paige and I.
But that’s a chapter for a different day.
Everything under the sun
J.P., Paige and I have had a busy year, and things don’t seem to be calming down.
But several people have asked how things are going and whether I’ve stopped blogging.
There are still plenty of stories to tell, and I’m hoping to break through the serious case of writer’s block that seems to have taken hold.
J.P. has a new NovaChat device that has made it much easier for him to communicate during his therapy sessions. He’s becoming much quicker with his switch and has learned the various pages to find what he’s trying to say. He’s also able to go back to his main page and navigate to other places.
During occupational therapy this week, we began the session simply asking J.P. to tell us what he wanted to do. He navigated to his school page, and then chose math and numbers.
I asked him what he wanted to do with numbers, and he went to his school page, then to science and sun.
I said, “Do you want to draw a picture of the sun?” I went to his phrases page, and he said, “Yes.”
His therapist and I allowed him to use the device to choose the colors for his picture. He chose yellow, red, orange and pink. His picture was great.
At the end, to incorporate the math he wanted, we asked him, “How many circles were in the picture?” He said, “One.” We then asked, “How many rectangles?” He said, “10.”
His therapist remarked that his teacher must have been talking to him about the sun, so I later asked the teacher, and she told me they were just talking about the sun and plants.
It makes me realize again how much more J.P. probably knows then even I give him credit for. I was talking to Paige about how we can incorporate this device into his daily life.
I’m so excited that he’s becoming better able to use the device and communicate. Hopefully, we’ll soon have pages with phrases like:
- “Please turn the TV channel.”
- “I’m uncomfortable.”
- “I want to play.”
- “I don’t feel good.”
- “My head hurts.”
- “My tummy hurts.”
- “I want my dog.”
The possibilities are endless, but so important and really exciting.
Think about it: J.P.’s ability to communicate just broke my case of writer’s block. Cool.
Birthday wishes to an amazing sister
Christmas was simply the beginning of birthday season in my family.
When I was younger, there was a multitude of birthdays just after the new year.
My grandfather had a birthday on Jan. 13, followed by my mother on Jan. 15, my sister on Jan. 22, and my birthday on Feb. 1.
With the loss of my grandfather and mother, it’s just my sister and me now, and I think we’ve grown closer as the surviving siblings.
I surprised my sister on her 50th birthday in 2014. Working through my dad and her kids, I was able to fly to Missouri and be sitting at the table when she arrived for her birthday dinner.
The double-take she gave me at the table was unforgettable.
We’ve made it through some difficult times as we’ve taken on adulthood, and when the chips have been down, I’ve greatly appreciated her presence.
Several years ago, we were dealing with Paige’s cancer, and my sister dropped everything to come to Florida and help us take care of J.P. while Paige underwent chemotherapy.
At times when J.P. has been hospitalized, she’s traveled here and spent some nights with him so he wasn’t alone in strange surroundings.
Being an older sibling, she’s guided me in many ways to be selfless and caring when others are experiencing tough times.
I’ve tried to pattern my journey into parenthood after her. She’s raised three amazing children. Two have graduated high school, and one just began driving.
She married an awesome husband who treats her well and stands by her at every turn. (I married an awesome wife.)
I’m glad she’s still in this game we call life with me. I know she’s only a phone call and plane flight away if I need her, and I hope she knows I’m here to do the same for her.
Happy birthday, Catherine!
Rocks and hard places
The past few months have been a roller coaster when it comes to J.P.’s health.
Shortly after Thanksgiving, J.P. started to have issues where he sounds congested and eventually vomits.
For Paige and I, it seemed very similar to what happened while we were in team training at Canine Companions for Independence, and we began to worry about his shunt.
J.P. was taken to Florida Hospital for Children’s emergency room and admitted, but his blood work showed he had a low sodium level, and the focus became that because he has diabetes insipidus.
While we were working to stabilize his sodium, the vomiting stopped, and J.P. was discharged.
But the problem wasn’t resolved, and the vomiting happened again. We tried to manage it as an outpatient, and more tests were done, including an upper-GI series to see if he was having increased reflux.
The study showed some evidence of reflux, but nothing out of the ordinary.
We were back in the hospital for the weekend before Christmas, but the doctors felt that J.P. was constipated from the barium used in the upper GI.
The problem was resolved, and J.P. had not had any further vomiting issues, so we were discharged again.
A few weeks ago, we started to notice J.P. seemed to be retaining more fluid, and the periodic vomiting started again.
This time, it was just before a follow-up appointment with J.P.’s endocrinologist. We had blood work done for him, and we found out his eosinophils were high. Eosinophils are a type of white blood cell.
The endocrinologist felt we should contact J.P.’s primary doctor to have him investigate it further. We immediately saw J.P.’s doctor, who did more blood work. The results showed some abnormalities, but things were trending better.
We decided to watch it and repeat blood work in a couple of weeks, but the vomiting started again, which led to another appointment with the gastroenterologist and some changes in his medications.
We also finally got J.P.’s doctors to check the shunt during an outpatient hospital visit that happened earlier this week.
We were relieved to learn that J.P.’s shunt is working properly, but I think I feel like we’re between a rock and a hard place. While there was relief, I was a bit disappointed to now be left with no clear clue as to what’s causing the periodic vomiting and congestion.
We’ve talked again with J.P.’s doctors, and we may now have a roundtable discussion with his doctors and specialists to see what to do next.
I’m impressed that we even have the chance to get everyone together in one room for something like that. It’s just one more reason why we’re glad to be part of the Coordinated Care for Kids program at Florida Hospital for Children.
Please pray that we can find the path to some answers to get J.P. over these issues.
To mom on her 73rd birthday
My dearest mom,
There’s not a day that goes by that I don’t think about you several times. It’s been almost five years since you left us, and I still miss your almost daily phone calls and chance to get together for a meal or just to chat.
The world has changed so much in five years. I really think you would love the new Keurigs that allow you to make iced tea instantly — and you can record all your favorite shows now without even using a videotape.
But more importantly, of course, is family. Paige has gone five years with no recurrence of breast cancer and J.P. just keeps growing. He’ll be a teenager this year. That’s so hard to believe, but I’m sure you’re making sure the angels keep a close eye on him — and us — every day.
We’re almost becoming victims of our own success. He’s too big now for Paige to pick up by herself, and that limits her ability to go places with him by herself.
We got approval for in-home nursing in December to help Paige while I’m at work, and we’re in the process of getting a lift installed to help get him around the house. It’s something I always figured would happen eventually, but it’s hard to believe the time has come.
The holidays this year went by way too fast. For the first time that I can remember, we didn’t even have time to get our Christmas tree put up. We resorted to a small tabletop one for Walmart just so J.P. wouldn’t feel like we totally abandoned the celebration.
J.P. was admitted twice to the hospital for what I still believe is a shunt malfunction, but it has been difficult to get the neurosurgeon to tap his shunt without more obvious symptoms. The first time he was admitted, blood work showed his sodium level was out of whack, and the second was blamed on too few dirty diapers.
Things still aren’t right with J.P., and we’ve been to the doctor several times and had more blood work to try to figure out what’s going on. I’m praying for some answers, and hope they come soon.
While he doesn’t seem to be in obvious pain, he’s not himself, and seems to be having fewer wet diapers and retaining more fluid in his body. Please keep telling those angels to bless our child.
Paige is also recovering from wrist surgery on the day after Christmas. It seemed like a good time to get it done as she was waking up in pain almost every night because of carpal tunnel syndrome. She’s slowly getting better, and I thank God for that.
The crazy times during the holidays and the beginning of the new year are the examples of the times I miss you most. You were a great listener, a confidant and a prayer warrior.
While you couldn’t change difficult circumstances, you were always there with the love that only a caring mother can provide.
The world dimmed a bit when you left this Earth, but I’m sure heaven became a bit brighter at the same time.
I thank you now for the love you provided to me and my family because I don’t think I thanked you or appreciated it nearly enough when you were around.
With love,
Jeff
Giving thanks
It’s officially the holiday season. I know that because I turned the radio in the car on today, and the Christmas carols were playing.
As we sit down to celebrate Thanksgiving, it’s time to reflect on what has happened this year and what I’m thankful for.
Family is always at the top of the list. I’m thankful for my wife, Paige, and the fact that she remains cancer-free for a fourth year.
I’m thankful that our son, J.P., has had a relatively hospital-free year. I can’t believe how much he’s growing and amazing us every day with the things he can do.
While J.P. has managed to be pretty stable when it comes to his health, we’ve had several other family members who have spent time in the hospital for surgical procedures.
I am extremely grateful that all seem to be doing well and healing as we sit down for our feast.
There will be a new guest at Thanksgiving this year: A four-legged friend, Karina, who was trained at Canine Companions for Independence and joined the family in May.
I’m thankful for this amazing organization and the work they do to give those with disabilities the opportunity to be more independent with the help of these amazing animals.
At the Thanksgiving table last year, we were talking about being matched with a skilled companion dog, and this year we’ll likely talk about having another human in the home.
We’ve been approved for nursing through PSA Healthcare, and we met two of the nurses who will begin helping with the heavy-lifting while I’m working. We’re grateful that we’ve been given this assistance to help with the lifting and care of our growing boy.
I’m thankful for another year of employment to pay the bills and provide the insurance. This year marks 25 years at WESH-TV and Hearst Television Inc.
It’s the only place I’ve worked alongside the local McDonald’s in high school. However, part of my career at WESH was under Internet Broadcasting Inc.
Speaking of work, I’ve spent much of this year working out. I’m proud to say my journey to physical fitness as helped me shed 40 pounds.
I’ll run the Turkey Trot at Lake Eola on Thanksgiving morning, and in just over a week, I plan to complete my first half-marathon.
But most of all, I’m thankful for my marriage. In just weeks, Paige and I will celebrate our 20th anniversary together.
I can’t say there’s been a dull moment in those two decades. We’ve navigated plenty of detours and always managed to remain focused despite the roadblocks we’ve faced on life’s highway.
I couldn’t have done it without her help, especially when it comes to raising a son with special needs.
Our families have been a tremendous asset over the years both personally and financially, and we’ve found support through some great local therapists, doctors, schools and Florida Hospital for Children.
It’s not a coincidence. We believe God has really set us up for success and carried us through the difficult times.
We’ll do our best to stay focused on the year ahead, and recognize the upcoming holiday season for it’s true meaning.
We wish everyone out there a terrific holiday season from our home to yours.
Remembering Belle
Dear Belle,
Paige and I were different people when you and Ariel came into our lives.
We were newlyweds, both in school, and I knew two kittens would be just what Paige needed in our new apartment in Lake Mary.
What a birthday present you were! I remember driving on Interstate 4 home after work, and I could see you peering through the wicker basket you were in, anxious to get to your new home and surprise Paige.
Ariel was so excited, she was starting to rip the basket apart and get her paws through the holes.
19 years ago. The world was a different place. The Internet was just being heard about. I was still carrying a pager, Paige was working as an electrical engineer and Claire Metz was anchoring the morning news on WESH-TV.
What fun we had together. You were so playful. Anything that moved was fair game. We tossed those paper coasters you get in restaurants around the apartment and you would catch them as if they were your prey.
It was hard to sleep at night because you had so much energy all the time. Sometimes you would hide and couldn’t be found. I would then realize you had leaped on top of the highest kitchen cabinets and were staring at us from above.
We knew we had outgrown the apartment shortly after y’all arrived and found a new home in Lake Mary. The extra space just gave you more room to run.
Ariel and you provided us much comfort through the years, especially when we learned J.P. was coming and had no idea if he would survive birth. You cuddled with us to help us calm our fears. We shared our worries with you in confidence, and you never betrayed our trust.
When J.P. was born, you treated him just like family and knew that from then on he would have to be our top priority.
Luckily, by then your energy level had fallen significantly, and just being able to have that time with us after J.P. went to bed made you purr with delight.
We still loved you though, and you knew it. Eventually, we had to start making accommodations for you as you aged. We fashioned steps for you so you would no longer have to leap from the floor to our bed, but you always wanted to be right there with us from night to dawn.
It’s been sad in the last few weeks to see you having such trouble getting around, especially when I can still remember you so vividly as a vivacious kitten.
So that’s how I’ll always remember you, and I thank you for the many wonderful memories you’ve left me with.
We will always love you, Belle, and you’ll be missed more than you’ll ever know.
With love,
Jeff, Paige, J.P., Ariel and Karina
To hospital or not to hospital?
It’s that time of year, and J.P. appears to be battling something just as cold and flu season arrives.
Just before I was supposed to wake up and run Wednesday morning, J.P. could be heard over his monitor, and he just didn’t sound right.
I went to check on him, and he sounded congested, so I got him comfortable again and continued to do my stretches, brush my teeth, etc.
But he just didn’t seem to be settling back down, so I got him up, Paige got the suction machine out, and the general alarm bells started ringing in our heads.
It’s always about this time when the mind starts anticipating a hospital visit. I generally begin asking myself several questions: Does he have a fever? Is he keeping food down? Is he having trouble breathing?
Initially, the answers to all those questions were no, so we simply canceled all of his appointments and gave him time to chill and see which way this was going to go.
Karina was simply incredible today. I think she knew J.P. wasn’t feeling well and spent most of the morning right next to him on the couch.
It wasn’t until Wednesday night when J.P. spiked a temperature, and our minds really began anticipating at least a visit to the doctor, which because J.P. is part of the Florida Hospital for Children Coordinated Care for Kids program does mean at least a visit to the Pediatric Outpatient Procedure and Sedation Unit.
While I’m still hopeful that we can manage this with pain relievers and over-the-counter cold medicines, I know my son, and what happens overnight will likely determine what our plans for Thursday will be.
I also know my wife quite well, and I’m sure she’s already packed her hospital bag just in case J.P. is admitted.
Stay tuned for the latest.
Wanted: Dog-loving walkers to support CCI
In just over a month, Canine Companions for Independence will hold its annual DogFest Walk ‘n Roll in Orlando, and more people are needed to support this vital organization.
Six months ago, J.P. was matched with his skilled companion dog, Karina, at team training at the Southeast Regional Center for CCI in Orlando.
Paige and I were amazed at the dedication shown by the staff at the center, and the amount of work they put into every dog that enters the program.
There’s a ton of work involved to turn a puppy into a service dog. and the organization estimates the cost of training each dog at about $60,000.
Beyond the training, there’s plenty of paperwork involved. It took about a year for us to go through the application process and interviews before the right dog was found for J.P.’s needs.
It’s a nonprofit organization that began in California in 1975 and has placed more than 4,000 service dogs to disabled individuals across the country at no cost to them.
The organization is funded entirely through private contributions from the public, gifts from businesses, civic groups and service clubs.
That’s where you come in: I would deeply appreciate your support of Team J.P. at the DogFest Walk ‘n Roll at the University of Central Florida on Nov. 9.
Lace up your walking shoes and join us for a fun-filled afternoon. You can even bring your own dog to walk at the event — at least those who are well-behaved.
Please take time to register for the walk and let me know. I’ll add you to our team.
If you can’t join us for the event, there is a big need to help our Southeast Regional Center to train and place more Canine Companions. Please consider a donation to Team J.P.
I can’t thank you enough for even considering joining us and supporting this worthy organization.
Karina, J.P. and Paige thank you, as well.
If you have questions, just leave them as a comment to this post, and I’ll do my best to get answers.
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Navigating Life's Detours 