2017 update!

We are long overdue for an update! Alexis has been doing amazing, she just wrapped up Kindergarten and has still has no issues with her LCHAD.  Hunter finished up a 2 day a week preschool program and will be going into Pre-K next year. Hunter had a few issues this year and ended up with 2 short hospital stays. Overall, we are very lucky. I just wanted to take a second to thank all our friends and family who support us day in and day out. I know its not always easy to figure out what they can and can't eat but we appreciate it so much! 

If this is your first time here make sure to check out how Hunter's diagnosis came about. Quickly followed by Alexis' diagnosis.

Last day of preschool with our favorite teacher!

Hunter & Wyatt's birthday party!

We love sports!

Have I mentioned we love sports! One of the major things you worry about when your baby gets diagnosed is if they will ever be able to play sports?!? It's a legitimate question, will they have enough energy? Will the aftermath of a hot day be too much for them? I'm happy to report both Hunter & Alexis have been doing great with every sport they have tried.  The only thing that has come up is when Hunter goes swimming, one day last summer he swam all day long (was acting fine) and had routine blood work the next day. That blood work came back slightly elevated (ck was in the 800s) not a huge deal but we had to get his blood work done the next day to make sure his CK was trending down, which it was. Last week Hunter needed to get blood work drawn, the day before he had gone swimming for a few hours so I decided to get his CK checked.  It came back around 250, which most LCHAD families know that is nothing on the scheme of CK's but it's elevated for Hunter. Right now this isn't a concern for us at all, if Hunter decides to become an Olympic swimmer this might become a concern and something we watch more closely.

Winter 2017 Basketball!

Spring Lacrosse! {May 2017}

Rising Sun Little League- Softball & Tball Spring 2017

All Star Cheer! (Year round! We just started season 3!)

Swim Lessons! Session 1 June 2017

Happy birthday Hunter & Wyatt!

Hunter turned 4 on June 7th & Wyatt turned 1 on June 11th! I love the bond these two have already, cant wait to see them grow up as best buddies.

 

 

 

Welcome Wyatt Allen Abrams!

We couldnt be happier to introduce Wyatt Allen Abrams. Wyatt was born June 11, 2016 weighing 9lbs 13oz! Big brother and big sister were so excited to meet him, although Hunter didn't want to get to close. Wyatt had some issues regulating his blood sugar when he was first born and was taken to the nursery to be put on d10, at this point we didn't know if he had LCHAD or not.  I was so scared and heartbroken to not have my baby with me but it was a short stay. He ended up losing his IV sooner then they wanted him to and his blood sugar did fine so they let him break out early! It took almost two weeks to get the call that Wyatt did NOT have LCHAD. I first got the good news from our pediatrician over a voicemail, I cried tears of joy my husband didn't know what to think.  I had to call our genetic counselor right after that just to hear her say he didn't have LCHAD too!  

We love you so much Wyatt!!

 

Wyatt & Big sister, Alexis

Dad, Hunter & Wyatt

Mom & Wyatt, getting snuggles in the nursery

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.