Saturday, June 27, 2009

Sisterly love

Wow, I guess I didn't realize how long it had been since I last updated. We have a lot of updates to catch up on. We have been back and forth from Colorado now twice. Our last trip to Colorado proved to be worthwhile and even if we didn't get any answers regarding Mylee's feeding troubles, we always enjoy spending time with our relatives in Colorado.

We have started feeding Mylee food trials a little each day. We have Mylee's respite nurse almost on a daily basis and she closely monitors Mylee respiratory. So far so good! We received some bad news a couple of weeks ago from Mylee's neurologist stating that he thinks Mylee may be experiencing some atrophy to her cerebellum. She was scheduled for a high resolution MRI of her brain, specifically the region surrounding the cerebellum and spine. We have not heard back from her neurologist. Please keep us in your thoughts and prayers, especially Mylee. We feel no news is good news. We will keep everyone posted as we get the results!

Khloe is growing like a weed. She had her 4 month appointment a couple of weeks ago. She is in the 95th percentile in height and 90th percentile in weight (15 pounds)!! Just yesterday, she started sitting up on her own, she can't quite pull herself to a sitting position - I imagine she will be doing this in a couple of weeks....she amazes us more and more.

Both girls seem to really enjoy each others company. It is so much fun to watch them together. We have already had a busy summer. We continue to keep ourselves busy with Mylee's schedule. She continues her therapy treatments several times a week. We have finished her individual education plan for the upcoming school year. Mylee will start special education preschool through our local school district. Although she has been tested to be severely delayed, we believe she will thrive in this new environment and surprise us all!!

Here is a current video of the girls. They really seem to love each other. It will be a lot of fun to watch them grow together and become best of friends!

As a part of Mylee's 3rd Birthday celebration, we have purchased her tickets to see The Wiggles again this year. We will take both girls to the event towards the end of July. We are also getting ready for Mylee's 2nd Annual Miracle Race for Mylee Grace. Her fundraiser event will take place on Sunday, September 20th. Also scheduled in September to raise money for Mylee to attend Chiari Camp will be her Pizza Extravaganza at our local Peter Piper Pizza. For more details on both events please visit her website at Contact us if you have any questions about donating to either one of these fundraisers :

We will be attending Chiari Camp with Mylee in November. Miracle Wish for Chiari along with CSF have put together a family weekend for familes affected by Chiari Malformation and it related disorders at Victory Junction in North Carolina. To learn more about Miracle Wish for Chiari or Victory Junction, visit these websites: