Jack was born at full term in February 2016. As soon as Jack came into the world, he decided to give his parents a run for their money. He was born with Sagittal Synostosis, a heart murmur, Laryngomalacia, and undescended testicles. In the first year of Jack’s life he had 3 surgeries: a Cranial Vault Reconstruction to fix the Synostosis, a Supraglottoplasty to help with the Laryngomalacia, and a double Orchiopexy, which also resulted in a hernia repair. At that time, we also had a gastronomy tube placed because Jack had stopped eating by mouth around 6 months and was losing weight. Throughout all of this, Jack was a trooper. He was strong and happy and was often found smiling in post-op… the nurses and doctors easily fell in love.
Jack began receiving PT, OT, and Speech Therapy services through Birth to Three at 4 months old. Now 21 months, he continues to receive these services in addition to a private Speech Therapist, who focuses on feeding therapy since Jack is still primarily fed through a g-tube, and an Aquatic Physical Therapist. We are hoping that within the next year and a half Jack will be able to eat solely by mouth and we can remove the g-tube. Jack attends a special needs program for children under the age of 3. He goes 2 days a week for 3 hours a day. He has a one-to-one aide, and it’s the best thing we could have found for him. He’s challenged and content, and we’ve seen major muscular and cognitive developments since he started in September 2017.
Last winter Jack spent more than 23 days in Yale’s PICU for Rhinovirus and Parainfluenza. The first time we brought him to the ER was the most traumatic. He had been sick for a few days after Thanksgiving. We found him in his crib one morning grey and struggling to breathe. He was intubated upon arrival at the hospital and remained so for 9 days. Although Rhinovirus is a common virus for children to contract, Jack struggled overcoming the illness because of his abnormal airway obstruction, which is simply a part of his anatomy. The next 2 hospital stays were for the same reason. Although the doctors discussed putting in a trach to avoid future dangerously low oxygen levels, we decided to hold off to see whether or not Jack can overcome this on his own as he grows bigger and stronger.
In addition to being followed by 12 specialists, Jack works with Dr. Richard Kelley, an expert in metabolic diseases and biochemistry, and Vicki Kobliner, a nutritionist. Dr. Kelley created a mitochondrial ‘cocktail’ for Jack based off of his metabolic abnormalities, and we’ve seen great improvements in Jack’s development since he began taking it. Vicki helped create a blenderized diet for Jack, so he eats a well balanced nutritious meal 3 times a day, all through his g-tube. He probably eats a healthier diet than most people I know!
It has definitely been a journey thus far with our little man. He brings us so much happiness everyday despite all that we’ve been through with him. Watching Jack hit milestones brings tears of joy to our eyes. His most recent accomplishment is sitting up by himself! We can only hope that he’ll continue to develop and thrive, and we can’t wait to see what he achieves next!