Alisha just turned five years old and has Cornelia de Lange Syndrome (CdLS). She does very well and she has greatly benefited from having many wonderful therapists, doctors, nurses, family and friends. Alisha, like all children, is so much more then her diagnosis. She is very smart and has always loved therapy. Alisha has always thought that it was a lot of fun to climb an obstacle course more than three times her height to get one puzzle piece and then climb back over the whole thing again to put the piece in the puzzle and then climb back over to get the next puzzle piece. She worked up to a 24-piece puzzle and then moved on to the next exercise!! She has tons of personality and loves to make people laugh. Alisha also loves to tease her brother and sister.
Alisha is missing fingers on both hands and uses her hands as different tools depending on what it is she needs to do. She is also very small for her age but is very healthy. CdLS kids are typically small so they have a different growth chart than the typically one used at a doctor's office. Alisha weighs 28 pounds and stands 37 inches tall. She had a LADD surgery along with a feeding tube placed when she was just 11 months old. She was walking at 13 months old with her feeding tube and we are very proud of her. Alisha's mom and grandfather made her a "push toy" that held her pump and food bag and allowed her to push/pull it around because she was too small to carry the pump and bag and nothing was going to tie her down. At the time she weighed just nine pounds. Now she carries her pump in a small back pack everywhere she goes.
I have always connected her tubing to her stomach no matter where we were -- even if it was sometimes uncomfortable for me because I wanted her to know that there was nothing wrong or bad about her pump -- we don't need to treat it like a secret. Alisha had always been mostly fine with it considering that she is carrying a backpack every where, which has some really annoying aspects to it. Just think about the reality of that for a minute, in California on the playground in the summer, etc. Anyway, I consider her to be quite the trooper and she doesn't complain much even though I know how much she just wants to be free of it all. A couple of months ago we had a late morning and she started to cry when I connected her tube in front of some of her classmates. That was a first. I picked her up and walked away and when I asked what was wrong she said "I don't want them to look at my belly." So, I don't do that anymore. At home or with family I hook her up wherever but we always do it before school.
Alisha is so ready to learn to eat she has even started to swallow her own medicine and eat more food around the house but still not nearly the amount to even change her pump feedings but she really wants it!! To me that is already half the battle. I know that it will be hard but I also know that she is a very happy energetic determined little big girl!
For more information about CdLS go to http://www.cdlsusa.org/
