Hi everyone! My name is Kayla Brooke I am 31/2 yrs old and on September 3 1997 I was born.  Two days after I was born my Mommy and Daddy found out by Dr. Ho that I had BWS. My mommy and Daddy were scared for they had no clue what that was. I spent 2 weeks in the hospital before I was able to go home. Then after I was home for about 2 weeks I gave my Mommy a real scare.... I stopped breathing on her. (I never saw Mommy work so hard in my life to help me breathe again; she was all by herself) I was rushed to The Medical Center of .... where in the wee hours of  the following Friday morning I did something that REALLY SCARED MY FAMILY  I CODED. The doctors and nurses told my mom and dad to leave the room, I could hear them crying outside my room door praying to the Lord above Please don't take her away from us yet.  Well the doctors and God made me better for a while but I was so sick that I needed to go to a better hospital. I took a 27 day visit at .... Hospital in ...., Ga. Boy did they work on me. I was in PICU the whole time with meds, and needles, and blood going to me and I was only 4 1/2 weeks old. By the time I was six weeks old a doctor called an ENT gave me a trach ( I will tell you about my trach adventure in a little while) and when I was about 5 weeks old I was given a peg tube so I could eat. Well I guess you want to know what all my traits are before I go farther in the story... I have creases on my ear lobe, I have a large tongue, pot belly, one side of my body is larger than the other including organs, I have hypoglycemia, large kidneys, pancreas, my left leg is shorter than my right by 1 inch and 3/4. Now back to the story... After I left the hospital I was able to come home. I was so weak, I would get tired easily. I did not like to be held for I had no muscle tone in my body. My room did not look like a nursery it looked like a hospital. I had 2 large liquid oxygen tanks, humidifier hooked on a pole along with my feeding bag pulse ox mach, abney monitor, suction machine. My mom took me to Dr  Wood in ...., Ga when I was 7 weeks old due to my tongue was getting bigger and had ulcers on it. My mom guessed I was in pain and she was right; So On Dec. 6, 1997 I had my 1st tongue surgery done and came home the next day , 4 days after my tongue split open (no worry said the doctor it would probably happen. I still had my trach at this time, my mom and dad would work with me on making sounds no matter how little I was they were bound to hear me cry. I had nursing come out to my house to help my mom. She was pretty beat with me. I was a full time job and then some.  I was taken to see Dr. Israel due to I was not gaining any weight. I was in a size 1 diaper for along time. He gave me a g-tube. Boy did that make my life better and my Mommy's for it did not hang out of my clothes like the peg tube did and you could clean it every day so I would not get sick (and I did that a lot I was in and out of the hospitals for about 19-20 months)  On my 1st Birthday I weighed 13 lbs. could not sit up , crawl nor walk. Even though my Mommy and Daddy  would work with me every day my body was still too weak. I was taken back to Dr Wood for my 2nd tongue surgery Jan 1999, it went well. Dr Israel put me on pediasure ( I like to call them shakes-shakes) My fav is strawberry... I started to gain weight and to sit up then crawl, and on Easter Sunday 1999 I took my first step!!!! on June 3rd 1999 my trach was taken out (I used the passy muir valve a short while  I would Blow it off and across the room hehehehe) On June 15th 1999 My baby sister was born (no signs of BWS) on September 26, 1999 I pulled my G-Button out and the doctor said leave it out ( I was supposed to have it till I was 7 showed him) I weighed about 25 lbs then. I am doing ok now I started school last fall, The only real problems that my momma has it that I am "Driving her nuts" her words  No really the one thing that my mom is scared about and needs info on is that when it is hot in the house or outside while I am playing I get a Fever of 102.0 or more and last May 00, had a seizure, I was real sick a few weeks ago with a high temp and feeling weak, I was like that when I was a baby also if  the a/c was not on I would run a real high temp. The doctor that I have now says he does not know if that is part of BWS or not.  My mommy is researching but has come up with nothing so far. Any help you can give I thank you. Hi I am Kayla's mom Crystal... It seems that when you are writing about the events that have happened along the way don't seem very hard or heart-breaking but as we all know it is. I live in Georgia and would enjoy meeting someone from the south that either has BWS or their children do. I have so many questions and concerns about my own child.  I would love to hear from anyone who needs someone to talk to. Thanks, Crystal & Kayla Csellars1@juno.com May 2001

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this page last modified: Tuesday March 27, 2007