Hi Everyone! I left off with day Kailey came home and that's where my Journal ended so I am going to try to continue the story from my memory. After Kailey came home we enjoyed Christmas with her but it was hard for family to understand that she could not be passed around and hard for me to say it, and even more difficult to ask whoever it was that wanted to hold her if they had washed their hands but I had to do what I had to do to keep her safe. Shortly after Christmas 2006 I came down with a terrible case of bronchitis and tried so hard not give Kailey anything. The heart medication she was on caused her to have a cough. Little did I know that the cough had turned into a cold and not long after pneumonia. We went to the Doctor who sent us straight up to the emergency department to have an x-ray of her chest and her oxygen levels checked. It was not good, the x-ray showed alot of fluid in her lungs and her o2 levels were pretty low, so she was admitted to the hospital for 5 days and again I felt like a failure that I couldn't keep my baby safe. That was the first time, Kailey ended up having pneumonia 4 more times over the course of the next year and many more stays at the hospital and each and every time we came home she had an array of new medications. It killed me to see her that sick yet she was always smiling. It seemed that although she was just a baby she never let the bad stuff in, it was and still is an inspiration to me.
When Kailey was 6 months old we went back to the Doctor who notice that She didn't make eye contact with anyone not even me, so we had to work at everyday so that Kailey could learn how to talk or babble as they say. I would have to hold her head and force her to look at me and make eye contact. It took a few months but Mike and I were persistent and she finally stated to make eye contact and babble. Also at six months we were still having to wake her up every three hours to feed her to ensure she was gaining weight as she was still very small for her age. Along with the all the meds that we had to giver every 8 hours and the feedings we were starting to get worn out and decided we needed help. I was given the phone number of a place here in town called the Lansdown Children Centre to call, they provided free services such as Physio, Occupational Therapy, Speech and Language and all other kinds of things to parents of children with Special needs, even though we didn't have diagnosis they took our referral anyways we went on a waiting list.
It would be a few months later that we started with the services. Right now Kailey has physio and O.T once a week and a few different classes that we attend. She also has a Child development worker that comes to the house every two weeks and a speech and language pathologist.
April 30, 2007 we finally had a Diagnosis for Kailey she was almsot 7 months old. We went to London to the gentetics clinic to see her metabolisist. They told us Kailey had a genetic disorder called 1p36 Chromosone Deletion. The only information they had for us was a small print out from the internet that basically told us nothing. That same day Mike and I were both tested for the "defect". It would be 2 months later that we would find out neither of us were the carriers and Kailey was a Fluke, it happened out of the blue. The day we found out I went home and cried. A little relieved to know what we were dealing with and very scared to know what we were dealing with. I went on the net to look up everything I could on it and all the web sited had little or no information on it. This is what I found:
1p36 deletion syndrome is a chromosome disorder that was described for the first time in the late 1990's and early 2000's. The Diagnosis frequently requires confirmation by FISH test, a technology of molecular analysis that only became widely available in the mid 1990's or array-CGH, an emerging technologyPeople with the syndrome have lost a small but variable amount of genetic material from the end of the short arm of one of their chromosome 1's. Their learning and physical developments are affected in relatively predictable ways. Most of the clinical difficulties are probably caused by the presence of only one copy of a number of genes. However, a child's other genes and personality also help to determine future developments, needs and achievements.There are certainly people with 1p36 deletion syndrome who have not yet been diagnosed. The disorder is now believed to affect one in 5000 newborn babies. If this is correct 1p36 deletion syndrome is one of the most commonly observed chromosome deletion disorders and over 900 babies will be born with it every year in the U.K and the U.S ( Currently no Canadian studies are available) Somewhat more girls appear to be affected then boys by a ratio of 38:23 in the largest study.