“We don’t know what the future holds for Gavin but we are so blessed to have Gavin in our lives.”
Gavin Kowalski, Trisomy 2 & 15, 9/30,2011, Oak Harbor, WA
Update 3/24/2015: Gavin turned 3 in September and started preschool through the school district in a special education classroom for 2 1/2 hours a day. Gavin is now walking and climbing on everything. He just recently broke his right arm with climbing. We are happy to have been seizure free x 9 months. His sleeping has improved overall but he still has days where he wakes up very early. He’s currently receiving therapy services at school but he also has gets additional ST, OT and PT along with seeing the chiropractor 1x a month. The chiropractor has been treating him for his seizures. Gavin is also learning to feed himself with a spoon. He has a very laid back personality but is learning to assert himself when he wants something. He talks jargon all the time and using the PECS system at times but does need more therapy to assist with this. He has poor safety awareness at times and wears AFO’s for toe walking. Gavin is almost always smiling and laughing. Gavin is continuing to show us that he can do whatever he puts his mind to, it just at his pace.
Update 2/2/2014: Gavin continues to amaze us everyday!! He is now able to walk without assistance but he does wear inserts in his shoes and theratogs to assist with his walking. He loses his balance at times but is improving with this everyday. He babbles with some sounds but is mostly non verbal yet. We are just starting the early steps with a communication board. He eats what every two year would eat now. He goes to a birth to 3 program, 2 year preschool two days a week along with weekly physical and speech therapy. He gets occupational therapy at preschool. In early 2014 he had surgery to remove his tonsils, adenoids and bilateral ear tubes were placed. He was diagnosised with sleep apnia and is on night tme oxygen. Since his surgery his breathing is improved along with his snoring. We are hoping the repeat sleep study will prove it in the next couple months. Gavin continues to battle seizures. We average one a week and continue to tweak his medication hoping it will stop the seizures. He is still on the petite side with his weight with weighing abou 24 lbs. He continues to be a very happy and determined little boy which helps him try to keep up with other children his age.
Original Story: Gavin was born on September 30th, 2011 at Madigan Army base near Seattle, Washington weighing 6 lbs, 5 oz. My pregnancy was normal except at 36 weeks when I developed HELLP syndrome and I had to be induced. Gavin developed pneumonia 3 days after birth and spent 8 days in the NICU. Gavin had difficulty with gaining weight at birth and at 8 weeks old started to have vomiting with feeding. At two months, Gavin’s pediatrician noticed an abnormality with Gavin’s head shape. We got referred to genetics and we discovered Gavin’s chromosome abnormality. Gavin’s duplication of chromosome 2q25.1-pter and chromosome 15q11.2-q14. It was also discovered that Gavin had sagittal craniosynostosis and he had surgery in March 2012 at Seattle Children’s.
Gavin was home two weeks from the hospital and he started having seizures. Gavin’s seizures are now controlled with Keppra and Gavin hasn’t had a seizure since he was hospitalized. He has been diagnosed with Psosis (droppy eyelid) and one eye is weaker than the other. Gavin just got his first pair of glasses. Medically Gavin is stable at this point with his weight being the biggest obstacle the doctors are watching.
Gavin started physical therapy in February of 2012 through early intervention for a hour weekly. In July of 2012, he started feeding therapy secondary to his gagging and slow development on his feeding. In August, we finally solved the problem of Gavin’s constant throwing up. Gavin is allergic to dairy and eliminating it has really helped his development. Up until that point, Gavin’s progression had been very slow in physical therapy. Gavin now is receiving physical therapy, occupational therapy, and speech therapy weekly. An early intervention teacher works with him twice a month for his life skills. Gavin has just started four point crawling but does army crawling at times when he wants to get somewhere faster. He is starting to walk in the Parallel bars and is cruising along the furniture. He sits independently and is able to pull himself up to things. His therapists continue to be amazed by his weekly progress.
Gavin is the love of our life and his personality will brighten up your day. He is a laid back child and loves to watch what happens around him. We don’t know what the future holds for Gavin but we are so blessed to have Gavin in our lives.