I'm that mom who likes to match her kids.... and I have no regrets :)
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| Paw Patrol.... 'nuff said :) |
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| Our ornament to remember the year our lives changed forever |
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| Alexis' ornaments from Preschool |
Note to self: Next Christmas pull out actual camera and do not rely on my phone.
Merry Christmas from My Awesome LCHAD Kids!!!
We were able to get about half of the Christmas cards out this year that we wanted to, so for those that didn't get a Christmas card this is what we sent. A generic card with this letter in it...
Abrams Family 2014:
Year in Review
What can I say about 2014, it was
crazy, unexpected and I’m glad it’s almost over. I tried picking out pictures
for our Christmas card but none of them seem to tell the story completely, so I
decided to go another route and write up a summary of our year.
I will start with Hunter since he
decided he wanted to start January out with a bang (aka his first hospital
stay.) He spent 4 days at the University of Maryland with the diagnosis of
Viral Myositis, boy was that wrong. Life continued uneventful till June. We
celebrated Hunter’s first birthday with a nice shindig at our house and then a
week or two later Hunter ended up in the hospital. After spending another week
in the hospital we left with the diagnosis of Fatty Acid Oxidation disorder,
and a few days later got the official diagnosis of LCHAD. Just a refresher, LCHAD (Long-chain
3-hydroxyacyl-coenzyme A dehydrogenase deficiency) means they can’t digest long
chain fats, long chain fats are in EVERYTHING!
If they eat more long chain fats then their body can handle it will
deposit in any of their major organs causing lifelong issues. Another part of this disease is they can’t
turn fat into energy, so they have to eat in order to have energy for everyday
life. The more active they are the more energy they need, the more they need to
eat. Or in case of sickness when your body needs more energy to fight off
infections, fevers etc. However, who wants to eat a ton when they are sick?
Usually the opposite happens. We don’t want to eat at all when we are sick. That’s
when our LCHAD’ers will end up in the hospital. Along with spouts of vomiting,
diarrhea etc. Since his diagnosis, Hunter
has had quite a few doctors’ appointments. Almost all we have left with good
news, with exception of the neurologist (which is a follow up from his hospital
stay) Hunter was diagnosed with a speech delay, so he has been in speech
therapy four times a month since October. Lastly, he was accepted into a trial for the
medicine he gets every month. He is being monitored closely by Children’s
national in Washington DC and will be starting his new medication in January.
Alexis has had an exciting year as
well. She was accepted into Pre-school at Rising Sun elementary school which
started in August. She loves school and is learning so much! In early September we found out Alexis has
LCHAD too. She is handling it like a champ & I’m proud to say that all of
her doctor’s appointments with our specialists we have left with good results
as well! Just a few weeks ago Alexis turned 4 and we celebrated with a birthday
party at That Bouncy Place.
Chris
finished paramedic class and shortly after got a new job with Cecil County
Department of Emergency Services. He is
still working part time at Harford County dispatch and the Harford County EMS
Foundation. With what free time he has
he is trying to spend more time at the firehouse and get back into
volunteering.
Not
much has changed for me, still working for Harford County dispatch full
time. I am still in love with my Scentsy
business! I even went on an all expenses paid trip to St. Louis this year for
Scentsy’s annual Family Reunion. I started a blog that I have been putting my
thoughts in and our adventures with LCHAD. I hope that it helps spread awareness
of LCHAD and when someone similar to myself finds out their child has LCHAD
they come across it and find comfort in what life can still be.
I am glad 2014 is coming to a close
and I am looking forward to making new memories in 2015. Hope you enjoyed our
Christmas Card/Story this year!
Yours
Truly,
Chris, Christy, Alexis & Hunter Abrams
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