Hello Everyone,
It has been a very long time since we last updated about Samantha. I am very happy to report that she is doing wonderful. She is going to be 7years old in October and is enjoying 1st grade very much. She has learned to walk and to run! She also has QUITE a vocabulary. She amazes me everyday, she learns new words all the time and is able to finally communicate with us pretty well.
We still are struggling with eating/drinking. Its almost as if her brain just doesn’t “get it.” I am still having to puree most of her food and basically feed her all of her meals. We could’ve gotten her a feeding tube, but decided against it, because she has not been aspirating or having trouble with pneumonia. (KNOCK ON WOOD!!!)
Of all the things we have done, and tried with Samantha, the one thing that I feel has helped her the most is the drug, Vigabatrin. She started taking it at just a few months of age and is still taking it today. We do have our share of seizures, but they are very manageable. We have also found that music has really helped her tremendously. She learns words from singing songs. She even knows words to 80s music!
Samantha did get a new baby sister in March of this year, and that as proved a bit challenging for her. She is not used to sharing her mommy and daddy with anyone, but her sister LOVES HER. The baby just smiles and giggles at Sam. I am hopeful that Samantha will watch her sister learn things and that they can help each other. I am just glad that Sam has someone else in our family besides me and her dad.
We are considering getting the VNS for her, possibly next year. We will keep you all updated as to what we decide with that.
Love,
The Ihrig Family