Chromosomal Deletion Abnormality in Baby Gregory; Parents Looking for Those Who Have Been There

October 28, 2013

I’m reaching out as I’m interested to know if there is anyone out there in our shoes!

My son, Gregory, is 13 months old and such a lovable baby. This past year has been hard for me and my family. Everything is a struggle, but everyday gets better. Progress is slow, but that is okay.

Short history: I had a normal pregnancy, fairly easy. Smiles all day, where I couldn’t wait to meet my son. September 3rd,  just three weeks before Gregory’s due date, my water broke. After hours of labor, we had an emergency c section because his heart rate dropped. He was finally in our arms, and we were so happy. Day two in recovery, baby Gregory was taken for his hearing test when he was rushed down to the NICU for fast breathing. From then on, it has been a bad dream. Six weeks of testing, prodding…. Ughhhhhh..

Then we found out that my baby had a rare chromosome abnormality. We finally were able to take him home six weeks later, but he had a g tube because he wasn’t feeding properly. The winter was rough…. He constantly had fevers and his tube constantly popped out. We were in and out of the hospital throughout the winter.

Today, Gregory is great! No fevers, no tube, his VSD is closing… Now our challenge is his development. He is globally delayed. He does not sit up yet (he has hypotonia), has a real hard time during therapy, doesn’t really like to be touched a lot, doesn’t respond to his name yet or communicate, and is having issues with solids. He just got the hang of being spoon fed. With all that said, he loves to laugh and smile, which just warms my heart!

My hopes for his future is that first and foremost he is happy and healthy. I just want to help him be the best he can be…..

Any parents out there in the New York city area that have had good experiences with therapists, speech, ot, pt, aba, etc., please reach out to me. I am currently looking into alternatives and would love to hear from other parents in similar situations in the comments!

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