Countdown to Rare Disease Day 2015!!

 

 

Rare Disease Day is always the last day in February each year & we are excited to participate and help raise awareness!  Check out Rarediseaseday.org for more information about it!

 

I want to do something special for this day, does anyone have any ideas? 

 

 

 



Our Facebook page!

Just wanted to let everyone know we changed our facebook page name from "Hunter's Heroes- Lchadd Awareness" to "My Awesome LCHAD Kids." We changed it to include Alexis in this LCHAD journey and now the name matches up with my blog. Here is the facebook link, go "like" our page!

Hope everyone is having a great thursday, kids are doing great so far this winter. Hunter started his new medicine a couple weeks ago and in the next couple of months Hunter has a neurolgy appointment and both kids have genetics and eye doctors appointments. Thank you for all of your continued support!

2015!!!

Well, Hello there 2015! 2014 was a mess for my family and I have been anxiously waiting for a new year, "new beginning" so to speak for a couple months now.

Obviously, we cant change the cards we were dealt but in 2015 we know what we are dealing with and we are ready to move past out diagnosis and go back to normal life.

Our hopes are to keep out kids healthy and out of the hospital, learn to eat healthy 100% of the time so they enjoy healthy food and don't care for the foods they cant have and combine as many doctor appointments as possible so our doctor days are few and far between.

In 2015, we are looking forward to Hunter turning 2, Alexis starting pre-K and then her 5th birthday.  We also want to set aside time from our everyday hustle and take day trips to kid friendly spots.

2015, I think you may be my favorite year yet.