Tuesday, May 13, 2008

Happy Tuesday!

Good morning to all of our family and friends! Mylee is already napping for the day and I think I might join her! Yesterday was such a long day for us, I actually ended the evening early and went to bed with my massive headache! Thankfully, I woke this morning feeling a 100 percent better.

Mylee's appointment yesterday with the nurse practioner in Dr. K's (pediatric physiatrist) office went I guess as well as can be expected (I don't have any high expectations for Mylee's medical professionals anymore)! Sorry I am just a little bitter right now because I want my baby to be normal!! But, I know you are asking yourself what is "normal"...well, I mean I just want her to be walking, talking and eating normally!! We will get there!! They think she will need orthotics to help with her balance and correct her feet/ankles that tend to bend inward when she is standing/walking...However, her physical therapist doesn't think she needs them at this point...so, we wait to see what her therapist and Dr. K and NP will decide. We will be seen again in 2 months. We will hopefully know something before then....stay tuned!

Okay, now on a more positive note Mylee is currently featured as the brave fighter on the brave figthers website. Here is some information regarding this link: "There are so many brave fighters out there, each fighting a difficult battle every single day. This site is to find comfort in the knowledge that we are not alone and to learn from the journeys that each of us walk every single day. It doesn't matter where we are in our journeys or whether we have completed the journey in some way or another, what matters is that we remain an inspiration to all we meet along the way"

Go to: http://bravefighters.synthasite.com/

Have you heard of The Little Heros Project? Mylee is our little hero! Go to: http://www.littlestheroesproject.org/
This is a realy cool idea...The founder of this site is writing a book. Mylee's story is currently featured on this website: www.thethingslifehastaughtme.com

I also got an email from a parent on a forum that I belong to regarding parents of children with Chiari Malformation. There was story broadcasted on the Good Morning America show I believe sometime last week. Fortunately, Mylee doesn't experience this symtom and is able to rest peacefully during naptimes and at night. However, check this interview out. I think it is fantastic that the public is becoming more and more aware of Chiari!

I am really excited to annouce that Mylee's fundraiser is becoming more a reality. We met with our friend Shawna and her family last evening. A radio broadcast of Mylee's fundraiser benefit is going to be aired weekly until the event on June 21st. Shawna and I will be talking on the radio next Monday to add more information, I believe this will be recorded and aired continuously until the event in June! Please view the details of her fundraiser at the links on the right side of Mylee's blog. If you have any questions, please feel free to contact me!

Thanks for all of your love and support!!


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