Saturday, March 16, 2013

Trisomy Awareness Day 15

Trisomy Awareness day 15, featuring Gavin Paul!

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. He will probably require glasses in the future. 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. He has discovered toys and is just starting to learn to army crawl. He can sit without support for short periods of time. He uses a stander for an hour daily. He is currently transitioning to a sippy cup and working on holding finger foods. 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.
Christine, Ted and Gavin Kowalski

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