Friday, April 15, 2016

BIRTHDAY MONTH

First off, today, April 15th is International Pompe Day. If any are interested, click HERE for information about making a donation to help AMDA reach their goal of $50,000.00.
Easter dress

best friends

It has been awhile since the last post.  Don't fret, it's because our days and weeks have been "normal"!  JoJo is doing great! Not much change from the last post. She loves going to the dog park and going for walks. Really anytime she is outside she is content. She has been healthy and SUPER happy. She loves to scream and talk to us. This kid has a lot to say about life. To bad I can't understand her because I am sure she has some pretty insightful things to say.

Here is what is coming up for the rest of this month...

****schedule change: surgery is moved to May 11th***Josephine is getting a G-tube (permanent feeding tube) and a new port! These two procedures will happen simultaneously just so we we limit the times she is put under.  Although she is in great shape for surgery there is still a higher risk factor for her than other children given her heart condition (cardiomyopathy). The doctors and Mom and Dad are very confident that she in perfect health and this surgery will be a piece of cake!

Speaking of cake.........

April 27th is JoJo's birthday!! And what a glorious birthday it will be. I believe that if we didn't seek out answers for our concerns about JoJo's health we wouldn't be celebrating her first year of life. My playful happy baby was fading quickly in December... But today, she is a JOYFUL, smart, sweet and sassy spirit who we love so dearly. We will celebrate her first year of life at the hospital while getting her weekly infusion! Its only appropriate. We want to celebrate with her caregivers who put so much time and energy into taking care of her. We celebrate them for giving us the opportunity to celebrate JoJo's birthday.
thanks to our nurses and doctors infusion days are always a blast!

Thank you to those who continue to pray for our family and who continue to reach out to share their support. There is no way we could do this without our community.