13 May 2009

busy bee...

Sorry I have been away from your blogs for so long...I am going to take some "me time" and get caught up soon.

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!

6 comments:

GinSpaghetti said...

Just clicked to follow Tilly's blog! I know you are relieved to find a fabulous support network too! BIG HUGS to Tilly!! Praying for you all.... Gin

Kimberly said...

Thanks, Ginger! You are a super friend. We appreciate your love and support!

Kimberly :)

LeeAnne said...

Yay for an official diagnosis -- I know it feels good, having endured lupus symptoms for over three years before getting the "official" word. I'm sure it feels good to be able to move forward. I can't wait to check out Tilly's blog!

Ann said...

I'm so happy that you can start down a path of healing now that you know exactly what's going on.

You and your family are in my prayers.

Doreen/www.MomGoesGreen.com said...

I wish you and your beautiful Tilly all the best. It must be a relief to receive a diagnosis so you can move ahead with direction. Take care and enjoy both your precious girls!

Chris said...

Hey Kimberly,great post! I would like to touch base with you about your blog. Please contact me directly at chris@greenpress.com

Look forward to hearing from you.

Thanks,
Chris