2010 Dinner Dance

In Honor of

Jackson

Jackson Iallonardi

Our son Jackson is a beautiful 8 year old boy who has many challenges.  When I was pregnant with Jackson, my doctor discovered that he had a problem with his kidneys called bilateral hydronephrosis.  Jackson's kidneys were not draining properly, and they needed to be closely monitored.  We were told that he would probably need surgery when he was born.  We were also told that there was a possibility that he might not survive the pregnancy.  I can distinctly remember saying to myself-  'whatever it is, just let him get here.  We will deal with whatever it is.  I just want my little boy to be born, to see his face, and to hold him in my arms.'  I have always remembered thinking that and feeling that way.  I know that Jackson is a gift.

Jackson was born on October 31st, 2001.  He was a beautiful baby!  He struggled early on.  Jackson had severe acid reflux and would vomit after every feeding.  He had difficulty sleeping more than 20 minutes at a time.  And he had to endure many different tests to evaluate his kidney function.  His kidneys were not draining properly and they became more and more dilated. Jackson had kidney surgery when he was just three months old.  At the time, it seemed like the most difficult thing in the world.  We had no idea all that was to come.

Jackson's surgery was difficult, but he was a trooper.  As time went on, he still had difficulty eating and he had some developmental delays.  He continued to go through evaluations and medical testing.  He started receiving early intervention when he was about 14 months old.  In addition to his developmental delays, Jackson's immune system was weak, and he was sick very often.  Jackson started to develop chronic diarrhea when he was 18 months old.  He started to exhibit some unusual behaviors, and we became more concerned about his development as time went on.

A week before Jackson turned 2, his twin brothers Bennett and Luca were born.  Jackson would not even look at them.  It was as if he didn't even know they were there.  We were extremely worried about his behavior and his lack of speech.  Jackson was diagnosed with autism 3 months after his 2nd birthday.  His health problems also continued.

We spent the next year researching whatever we could to help Jackson.  He was in intensive therapy in our home, which included speech therapy, feeding therapy, occupational therapy, physical therapy, and applied behavior analysis.  His health was still compromised and he had chronic medical issues. The winter brought several trips to the ER for very bad croup that made it difficult for him to breathe.  Even though he was 3, he still ate only baby food.  It was a full time job just figuring out how to treat it all. 

Just a year after learning Jackson had autism, Bennett and Luca were diagnosed too.  It was devastating.

Our house became a full time therapy center.  We took out a loan to create a therapeutic environment for the boys, to buy teaching materials, therapy equipment, speech supplies and more.  Whatever we could do to help them, we did.  It was a tremendous strain, both emotionally and financially.

As time went on, Bennett and Luca made great progress.  But Jackson still struggled. A year went by, and Bennett and Luca said their first words.  Jackson didn't.  It was a roller coaster of joy and pain, of happy and sad.  It was very difficult. Another year went by, and Bennett and Luca were toilet trained.   Jackson was not.  The twins flew past their big brother in all developmental areas.

Over time, Jackson made slow progress.  He continued to eat only baby food until he was 4 and a half years old.  It took 4 years and 4 different feeding therapists to finally help Jackson eat a piece of chicken.  When he was 5 and a half, he said his first word.  It was the word apple, and it was the most beautiful sound in the world.  Just before his 8th birthday, Jackson was finally toilet trained.  All three of those things are miracles that we thought might never happen.

Over the years, we have learned the cause of many of Jackson's medical issues, while some still remain a mystery.  Jackson has both food and environmental allergies.  He cannot eat wheat, dairy, soy, corn, peanuts, or tree nuts.  Jackson suffers from chronic upper respiratory infections, and we now have equipment at home to treat him. He had antibiotic resistant urinary tract infections for almost a year. When Jackson was 4 years old, he had a colonoscopy and endoscopy to try to find the cause of his chronic diarrhea.  We learned then that Jackson had colitis caused by chronic inflammation in his body.  That same year, we learned that Jackson had Chiari Malformation, a brain disorder, also caused by inflammation.   Jackson's brain was too big for his skull, and his cerebellum was being compressed.  This could be causing him pain and headaches, as well as many other problems.  Unfortunately, Jackson had no way to tell us that he had a headache, and the thought that he could be suffering head pain on a daily basis was heartbreaking.  In August 2007, Jackson had neurosurgery at Columbia Presbyterian to help relieve the pressure in his brain caused by the inflammation and Chiari.   Two months later, he spent 2 weeks in ankle/foot casts because he had tightened heel cords.  Four months after that, Jackson had a retropharyngeal abscess and was hospitalized for 4 more days. We also learned that Jackson has low human growth hormone, and should be treated with growth hormone shots.  But he has always had so many other medical issues going on, that we still have not been able to pursue this kind of treatment.  After some additional medical testing this summer, we learned that Jackson has Bartonella, which is similar to Lyme disease. 

Developmentally, Jackson still struggles.  He can speak enough to meet his basic needs, saying things like "I want chicken" or "bathroom."  He is usually understood by those who know him well.  He is still unable to have a conversation or answer a simple question such as "how are you?"  Jackson does not know how to play with his brothers and he requires one to one care at all times.

Just a few months ago, Jackson went through one of his worst medical issues ever.   He had a seizure that lasted 2 hours long.  Doctors were unable to stop it and it required three different medications.   He had difficulty breathing and was intubated.  We stayed in the pediatric intensive care unit for 4 days and came home with no answers.  Jackson was definitely traumatized by the entire ordeal. He is still undergoing testing now and has a hospital stay coming up next week.  No one knows yet what caused the seizure but they do know that he is at a greater risk to have another.  He has slept in our bed every night since he came home from the hospital because we fear what would happen if he had a seizure in the night and we didn't know it.

Despite all of that, Jackson is a happy boy.  He loves the alphabet, and loves any toys with letters on them.  Jackson likes to run, climb, and play.  He loves the water.  And Jackson loves when the whole family is together.

His brothers have made incredible progress.  They are 6 now, and Luca no longer needs special help of any kind.  Bennett has done great too.  He still requires support at school and home, and we are doing whatever we can to help him, including occupational and speech therapy, and some alternative treatments.  Both boys are fortunate that they have not suffered any of the medical problems that Jackson has.  They both love their brother very much, and understand that Jackson needs extra special help.

No matter what challenges he has faced, and no matter what lies ahead, we know that Jackson is a gift.  He makes every day brighter, and every milestone is amazing.  He has taught us more than we can ever teach him, and we are blessed to be his parents. 

We love you beautiful Jackson!