Since the last blog...
Ellie had her 6 month re-evaluation with her interventionists. The assessment they gave her is an assessment they give to all children, not just children with disabilities. The normal scoring range is between 90 and 110. Ellie scored a 89. She is one point below the normal scoring range!! They believe the only reason she didn't score in the normal range is because she was laid up for several weeks when she had her open heart surgery and if she would have been able to work on skills during that time she would have scored in the normal range. I was told that the intervention that is offered now for babies with DS is more intense then it used to be and they notice a HUGE impact on the development of children with DS long term. There is no one magic pill but they say some things that can have an impact on her development are fish oil, vitamins, and florestore. Babies with DS tend to stop producing the oily substance in their brain and the fish oil can replace that helping their brain to process quicker. Children with DS tend to become sick more often so taking vitamins and florestore can help prevent many of these sicknesses and help her to stay on track with development instead of being laid up with an illness. We are doing all of these things. She is receiving developmental intervention and physical therapy as well as taking all of these supplements to help her development. Her biggest advantage is the prayers that are with her. There are soo many people praying and loving this little girl. She is definitely in the hands of the father!! Thank you Jesus for my beautiful baby's progress.
We participated in the Down Syndrome of Louisville On the Move Buddy Walk. We weren't sure what it was all about so this year we just went as a family. It was AMAZING to see all of the people there. They had posters of children and adults with DS and pictures of them and their abilities. It was very hopeful to see. Anyway...next year we want to form a team to walk with Ellie. They had all kinds of teams there with really cool themes and names. Names like Susies superheros and Patricks Patrol. We want to come up with a cool theme and team name for Ellie for next year. We also want to have MANY people on our team. How awesome would it be to have all those people walking with Ellie to support a program that is going to be working with Ellie for the rest of her life. The Louisville Metro area has approximately 500 families they serve that have DS that is not to mention the surrounding areas. I have been told that Ellie is in the best place to grow up with DS. She has soo many programs and opportunities for her to be independent and work, and live, and be...like everyone else. God knew the plan to bring us to Lousiville LONG before we Ellie was even a twinkle in my eye. Anyway...We need help coming up with a name for Ellie's team for next year. Any suggestions are welcome.
Also, recently there was an article in the paper about a little 3 year old boy named Brady. He was born with DS and a congenital heart defect that required MULTIPLE surgeries. He passed away during the last surgery he had. The article went on to explain that many people see children with DS as a burden on the family and society because of their health issues and long term care issues. However the family argued that the life of little Brady was valued by all who knew him. In his short years he touched more people with the kind of love we only dream about. The kind of passion that we have never seen and the drive that can not be detoured. So many people hear DS during their pregnancy and the thought of termination crosses their mind. I could not imagine life without Ellie. I pray that no one ever takes the life a child due to a diagnosis of DS. They are not a burden, they are a blessing...I cried when I read Brady's story in the paper beause his story hit home. His final fate was what I had feared for Ellie. That was not God's will and we are still blessed with my little miracle baby. Her smile melts me, her laughter brings me to tears. No matter how tired I am or grumpy I am...one look from her and everything goes away and the world is good again. Thank you Lord for opening my eyes to what is important. I wouldn't change one thing about Ellie...I LOVE her and her extra chomosome. Oh...there was a cool poster up at the DS walk...it said...Friends don't count chomosomes. AWESOME!!
No comments:
Post a Comment