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Kayla was born, one of twins, on March 5, 1997. I have created this page to let you in on her story.
We knew that she would be born with Turners Syndrome prior to birth thru amnio. See Kayla, is one of twins, and the doctors were trying to determine why she was so much smaller than her sister. I believe I was given every other possible test imaginable but the results would not come up with any concrete diagnoses, hence the amnio (something that they were trying to avoid as they didn't want to put the girls at risk). I was naturally given all the horror stories regarding what might go wrong with the pregancy, delivery, yadda, yadda, yadda. Its no wonder I was kept in the hopital for my last trimester, the emotional rollercoaster was quite the ride. I wasn't allowed to go into labour(the stress would have been too much for the girls to survive) but the doctors did want my water to break naturally. Exact timing for the event was very important. It could have all been a life or death situation for one or both of them. This little girl literally had an army of doctors before she was born and two operating rooms on standby for the blessed day. The girls where born by C-Section, Kayla being the first to be popped out and immediately rushed away....I was only to take a quick peek and poof she was gone. As it turns out she did not need any additional medical attention. She was put into the Special Care Nursery at B.C. Children's Hospital and her sister, Kelsey, was rushed up to Natal Care. Kayla then spent the first 6 weeks of her life in SCN to just.....grow and gain wait. She was a joy to the nursing staff in this environment as she was one of the only babies in care that could actually be handled. Her birth weight was 1.15 pounds. To give an example of her size, the hospital pacifiers were about the same size has her head and her arms about the same size has an adult index finger. Yes, small, by every definition. When she was finally able to come home, she still only weighed 3.9 lbs and her fingers were still quite transparent. Rather creepy when you think of it, but she was as healthy as a horse. She does have quite a few of the TS traits but so far todate we have been very lucky that they have been nothing medically major. She is presently on Growth Hormone treatment and has been since just February of this year. All is good in that department and she is responding very well to this treatment. Her next endocrinology appointment is on November 18, 2004. We are both looking forward to it very much. She can now turn on a light switch without the use of aides!!!!
Kayla is now 7 and in Grade 2. Yes, she does have some learning disabilities but we are trying to work around them. Her school this year has been right on board with our efforts and it seems to be working quite well. She will be tested in the Spring to find out exactly where she stands. I see many signs of NLD within her and have myself done much research on this subject. I have a link to a great website regarding Nonverbal Learning Disabilities/Disorders. Hopefully with the aid of the school and doctors, she will not find to many struggles to overcome.
Kayla is a very active child. She Tap Dances, rides her bike, skooter, roller blades, loves baseball. She is just a regular kid in every sense of the word. As I write this entry she is dancing with her sisters to the song "Barbie Girl"
I am going to try to keep up this journal for Kayla to look at later. It may also turn into a journal for myself and my worries in dealing with TS and all of its avenues.
Please sign the guest book and come back often. One of the most important things that she needs to know in life is......she is not alone.
Kayla, like others with Turner Syndrome, is a ray of sunshine in so many ways!!!!
Journal
Monday, February 13, 2006 8:54 AM CST A friend from one of the Turner Syndrome Sites wrote this little message for her daughter and it also describes my hpes and dreams you and your sisters.
"May you continue to always see the glass half full. May you never lose
your smile and cheer. May you always stay so excited over the simple
things in life. May you always continue to never give up no matter how
hard things get. May you never lose your unwavering confidence in
yourself. May you always know the love your family has for you. If
these hold true then, no matter where life leads you, you will always
be happy. Who could ask for more?"
It's actually very funny that I would come across something like this today....since today is the day that I meet with Dr. Sharon Arnold. She is the pyschologist that will be assessing your educational needs this coming weekend. I'm a little aprehensive to find out what your needs are, if I was correct to think that there are issues we need to address or if I have been making too much out of nothing. I guess I'm doubting myself here just a wee bit.
I will let you know how it went and what my thoughts are on this later on. Just know that regardless of how this all turns out, you are loved very very much.
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