I have had a very excuse though. Over the last week or so, I have been functioning in "Mama Bear" mode. We have been waiting for our lackluster neurologist to notify us of Matilda's MRI and vision test results. After relentless pushing, we received an "official" diagnosis for her - Joubert Syndrome - which is more accurate than her Dandy Walker Syndrome working diagnosis. While it seems odd to say, I am so thrilled and relieved to have a name to put with what we have been going through as a family. Now we are able to fully take advantage of the wonderful support systems and information available to the families of Joubert Syndrome children.
I am currently working on a new blog "Matilda Matters" dedicated just to our journey thus far. It will also share her day to day activities. I thought it appropriate to create a separate blog because the nature of it will be so different from this blog. I hope you will visit this other blog, too.
Until then, take care and have a fabulous week!