Tuesday, May 18, 2010

A Meeting with Genetics

We are so lucky to live in Houston and so close to Texas Children's Hospital. When Elle was diagnosed with CHARGE Syndrome we were blessed to meet one of the fabulous doctors that leads research on the syndrome - and thankfully, she is a Texas Children's doctor. I believe there are 2 doctors in the United States that do extensive research on CHARGE Syndrome and Dr. L is one of them. We are so blessed! Monday we had an appointment with Dr. L so she could see Elle's progress. As soon as Dr. L walked in to the room, Miss Elle hammed it up. She was crawling all around the room, pulling herself up on Dr. L's skirt and trying talking the whole time. Dr. L was so impressed by all Elle's activity. I was telling her about sign language and how Elle has really excelled with it. She asked to see some of Elle's signs so I sat Elle on my lap and we went through some of her signs. Elle had done around 10 signs when I looked over at Dr. L and saw her wiping tears away. She was laughing and clapping and was so impressed by our little Elle. I absolutely love that she is as thrilled with Elle's progress as we are. Elle is like a little sponge. She has sign language every Friday and seems to learn something new every week. I get so tickled spending the days with her - I think I laugh most of the day at her and her little expressions and things she does. Everything we do - she mimics. This weekend, I had a sneezing fit and I looked up to see Elle mimicking me. Oh My - she is one very smart little girl!


Lindsey said...

I wonder if you could work on some nursery rhymes or songs with her, in sign language? I remember learning "Jesus Loves Me" in sign when I was very little... Also performed "Silent Night" in sign (SOLO- I was terrified) when I was in first grade. Just a thought. You might enjoy the memories as much as I have enjoyed them. :)

On the other hand- I'm thrilled that Elle is doing so fabulously!! Thanks for posting an update on that sweet girl. :)

-Lindsey in AZ

Erin said...

what a blessing that you have such wonderful doctors who truly care and celebrate all the little victories with you! i am so happy for y'all! i can't wait to see elle this weekend!

Amanda Hoyt said...

Hi Lisha,
My name is Amanda & my parents know Elle's great grandparents Ronnie & Bonnie from Harvest Bible. My parents are Ron & Melinda Sralla. I have followed your blog for some time but have not commented (or at least I don't think I have :))
You are such a great mom and I am so blessed by your positiveness and faith in our Lord! Thank you for sharing your story with us!
I wondered if you could email me and/or if you would be willing to talk to my friend Lauren who has a special needs baby who just came home from TCH Level III NICU on May 8. Baby Lillian has had ECMO, diaphragmatic hernia surgery, has Turner Syndrome and has Agenesis of the Corpus Callosum. Lauren is currently struggling with a decision on whether to have the G-Button put in the place of the nasal feeding tube. The pediatrician says Lillian is not growing as she should and Lauren knows that Lillian is pretty much throwing all of her feedings up. She doesn't want her tiny sick baby to go through another surgery so soon, but if it will help her gain weight and not throw up so much, she's willing to make the decision. She asked me if I knew anyone who had gone from nasal to G-button and I thought Elle had...please, if you don't mind, let me know if you could call Lauren with any advice on this subject. We both live in Cypress. Thank you for your time.
P.S. Lauren's blog is here: http://laurenandlillian.blogspot.com/