ONE YEAR Hospital Admission Free!

One year hospital admission free!!! & we couldn't be more thrilled.  We couldn't have made it here without the thoughtfulness of our friends not bringing germs around and/or always giving me a heads up when they were sick or around someone that is sick. So with that THANK YOU!! 

Alexis is still completely hospital admission free! 4.5 years and counting. 

Alexis Finishes Pre-School!!

Alexis had a great year at pre-school! We went to Rising Sun Elementary School and the school was more then accommodating when it came to LCHAD. 

 Here is her Pre-school teacher Mrs. S! 

& side by side picture for comparison from her first day of pre-school to her last day! 

Hunter's 2nd Birthday!

Here are a few pictures from Hunter's second birthday party! We celebrated his birthday on his birthday this year, June 7!! I dont have a picture of it but my friend made a super cute truck cake for Hunter out of angel food cake with fat free cool whip as the icing so it was completely fat free! 

The use of baby jail for a group picture was not a success! 

 & who is the best big sister?! Alexis! Here is her card she made specially for Hunter! 

Thank you to our friends and family who came and celebrated with us! 

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.

Goodbye Forever 2014

Goodbye forever 2014. You will go down in history as the most stressful year of my life.

This past January, one day before I was supposed to leaving for Cancun on a business trip you threw me my first wrench. Hunter had his first hospital stay which they told me "would never happen again." I cry thinking about how gravely different this January or any of Hunters 12 months could have been that he went undiagnosed.

We lived blissfully unaware of his disease for another 6 months until it happened again. Every thing was the same, I was living the same nightmare all over. Luckily for us the doctors at University of Maryland knew there was an underlying issue they needed to find.  After consulting a ton of doctors, the geneticist ordered the test that would give us our answers.

We were discharges from the hospital with the diagnosis of Fatty Acid Oxidation Disorder. That was enough information to read horror stories online and prepare us for the worst and drive us crazy with the unknown till they called 5 days later and said LCHAD. I had done my research and knew what that meant (or I thought I knew what that meant) I had read some worse case scenarios online.

Over the next couple of weeks working with the geneticist and nutritionist I realized this wasn't a worse case scenario LCHAD.

Hallelujah!

I had hit rock bottom of emotions, I had cried every time I was by myself for weeks, I had lost sight of what the future looked like but talking about Hunter's LCHAD gave me comfort and his future... our future was looking up.

Then Alexis got her diagnosis... what can I say, I had a handle on the disease but I NEVER expected she would have it.

We spent the rest of the year seeing specialists making sure they weren't having any complications from being undiagnosed for so long. I'm happy to say everything checks out perfect!

We are lucky and we are the minority of LCHAD'ers who survived undiagnosed and for that I am forever grateful.

This has changed our lives forever but I will not let this disease win.  We appreciate our friends, family and followers that are helping us educate and raise awareness.  We will continue sharing our story in hopes more people learn about LCHAD and we hope those with a new diagnosis of LCHAD find comfort in our story.

You may not be able to see the fight within their bodies but it is there and never going away.