Leohelp

Leonie's story

Posted on 04/27/08, 02:33 pm

We found out through an amnio which led to further testing once she was born. Leonie was a 13 week Preemie, so that was the least of our concerns, so much so that the doctor's even failed to tell us. I feel that if Leonie hadn't been transfered to a hospital closer to home, we may not have ever found out. The told us about the Mosaic Turner Syndrome the day before she transfered. Leonie is now 2 and a half and doing just fine. As of yet we have not had any complications. We see her Geneticist every year and her Endocrinologist every 6 months to do the tests for the thyroid and to check her growth hormone. So far we have opted out of the growth hormone, but we will see in another 6 months how she is doing. She still fits into 12-18 month clothing, sometimes even smaller. We are currently in the process of potty training. It is starting to be successful so far.

That is her story in a nutshell. We are mostly here to find others like her and/or with full TS to see what they have overcome.

• Reply #1 04/29/08  11:51pm
  
  AlyV
  Thank you so much to sharing Leonie's story. It is so helpful for me to find moms out there who are having the same issues or questions that I have. Good luck on potty training. It will happen when she is ready!
  My baby is 13 months old and she had heart surgery at 6 mo. old. She is doing great from that - still on blood pressure meds. and seeing a cardio every 6 mo. We are now seeing an endocrinologist, audiologist, and having her eyes checked - sorry I couldn't spell that one - it is too late in the day for me to try that one! She is not crawling on her knees yet - she comando crawls, and is sitting up , but not showing any readiness for pulling up or walking. I know it will come - but sometimes I feel so impatient. Thank you again for sharing your story.
• Reply #2 05/01/08  12:41am
  
  Leohelp
  Little girls can be so stubborn when they want to be =) Glad to here she is doing well. That had to be a scary time in your lives. Have you looked into your Area Education Agency in you area. They can do wonders! Leonie started seeing one when she was 3(chronological)6(chronological) months old. I believe they helped her out a lot. My agency, which I am sure yours does too, has a share toy system that if your child needs say a push toy to practice standing and/or walking they can loan the toy out to you for how ever long you want it. Just an idea. Take care =)

Mothers who have daughters of all ages that have Turner Syndrome. All are welcome - it doesn't matter if she has been diagnosed for 50 years or 1 day. Turner girls are also welcome to share stories about their mothers.