Abrams, Party Of 5?!

No I'm not pregnant but I wish I was.  For as long as I can remember I've wanted a big family and Chris & I have always been on the same page with that. Don't worry, we don't want to be the next Duggar family but more than 2 was defiantly something we imagined for our family. Hunter was diagnosed and I found out my chance of having another LCHAD  baby was 1 in 4, one in FOUR! How could I ever have more kids? One sick kid was more then I ever thought I could handle.... then Alexis was diagnosed. How could I ever handle TWO kids with this disease.  At one of our appointments with our geneticist she talked about "family planning" and I found out IVF was an option.  To me at the time IVF was our only option. Going the IVF route would mean they would test our embyros for LCHAD prior to the transfer. I had good insurance that covered IVF 100% for infertility, I thought getting insurance to cover this for me would be a walk in the park.  BOY, WAS I WRONG.  We have been going Shady Grove since March to have a ton of tests and blood work done to find out everything is in working order and I should be able to get pregnant no problem. Great, I knew that already. So here we are at that point where we can actually get started.... and insurance still hasn't approved it! Or is it that shady grove hasn't submitted for pre-authorization? Depends on the day and who I talk to which is the case...  I am heartbroken to put it lightly.

I was pretty vocal about doing IVF in the future but haven't been vocal about the process already being started so I felt like I should update everyone. We don't know what we will do from here, I'm not against having another baby with the 1 in 4 chance but I'm also scared.  I have 2 healthy LCHAD kids, I might not be so luck with my 3rd LCHAD'er. It is a very personal decision. What's next for us? Will we ever be Abrams, party of 5? We honestly don't know.

I didn't make this post for a pity party it was simply to let those that care know what's been going on.

Children's National 5k

I will be participating in a 5k called Race For Every Child, benefits go to Children's National for all the things insurance doesn't cover. Please consider donating if you can or joining our team, My Awesome LCHAD Kids. Here is the link

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.