Conner and I were at Children's Hospital last month to meet with his geneticist. During the appointment our doctor asked us if we would like to exchange contact information with another family who has a child with Kabuki Syndrome. Of course, we said yes! Their little boy is only 2, and since every child is very different it is hard to compare them, but there are still many similarities. We emailed a few times and then decided to meet and let the kids play at a park. I still cannot believe that they live only 15 minutes away.
While watching the kids play I was reminded of Conner at two years old. Still tube fed, barely started walking, and probably only 5 words. Wow, time sure does fly! Conner's geneticist is very happy with Conner's development, and says that he is by far the highest functioning child with Kabuki Syndrome she has ever seen!
Our new little friend does not have the hearing loss that Conner has, but he does have significant vision issues. I am excited to keep in touch and share stories, and support eachother as our boys grow older.
Allie LOVED these little flowers. She sat and spun all day. She would find someone to spin her, and then try to get out and walk, usually falling over because she was soooo dizzy. She was hysterical.
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