Kennedy Christine was born July 28, 1999, a scheduled c-section. The day before we took her home she diagnosed with Hemi-Hypertraphy, Harliquins Hallo and Miller-Dieker Syndrome. With the MDS diagnosis we were told she would live three months to less then two years. At a month and half we found out that the diagnosis was incorrect. What she does have is a brain malformation called Polymicrogyra. According to the leading specialist in the country, Dr. Dobyns, who is with the University of Chicago, this means she will have moderate developemental delay. We recently attended the 2003 Liss Get-Together were her diagnosis was changed to non-a-typical polymicrogyria. Her MRI films are just not like anyone elses. She started having seizures at seven weeks and takes Phenobarbital & Carbitrol to control them. The biggest things that bothers her seizures are colds, cutting teeth and large weight gain. Otherwise, the medication controls them very well. She also gets a once a month shot for her hormones because she has a high estrogen level.
She is 10 years old and weights around 65lbs and is getting taller everyday. She has a wheelchair which helps her to strengthen her trunk muscles. She cooes, laughs, smiles, rolls over on her side and reachs and holds toys. She is shaking her head "Yes and No". She is sitting up unassisted with no hands on. She spoon feeds very well, all kinds of table food , she drinks from a sippy cup. She also drinks from a straw. She attends school five days a week all day. Where she has pt, ot, speech, gym and swimming. She use's a Rifton Pacer Gait Trainer to help her learn to walk. My hope is that someday she will be able to turn her cooing and noise's into real words as many kids with this disorder do not talk.
She is taking steps every day to prove the doctors wrong. I hope that her story will give encouragement to other family's dealing with children with special needs.
|
