(Larkin Feb. 2006 4wks old, just had her feeding tube surgery. Still in NICU)
Today I read a blog about a newly diagnosed little girl with SMA. It brought back memories of when we found out our little lady had SMA, Spinal Muscular Atrophy type 1, the #1 genetic killer of children 2yrs and younger). I felt compelled to write about how we went from hopeless to HOPEFUL over the years. (yes I said "years"...she has beat the odds)
(just home from the NICU...june 2006, 5 months old)
When we got the startling news that Larkin had SMA we were in complete shock. We just thought that her Down Syndrome was the reason for her floppiness. We were told Larkin would not survive to see her 2nd birthday. I googled SMA before we had the positive confirmation and I did read that SMA was the #1 genetic killer of children under 2 years of age. I also went numb when I read that they will loose their muscles to breathe and swallow. They do not have head and neck control, etc and will be dependant on others for their every need.
Even after all of the HORRIBLE things that I had read, the one thing I knew was I WAS NOT GOING TO LET MY BABY DIE!! I said that to the doctors to the nurses and to anyone else that was listening to me. I WAS IN FIGHTING MODE...MY HUSBAND RIGHT BY MY SIDE! The first thing we did was have the Tracheostomy so we could get her extubated. The doctors looked shocked when my husband and I decided to trach her. Infact...it wasn't even an option for us to just extubate her and watch her pass away. I could not bear to watch something like that and besides I gave this baby life and I was going to fight tooth and nail to help make her live and to give her the best life possible. She was two and half months old at the time of this descision and had been intubated for over 2 weeks. She made it through the surgery well and it was such a blessing.
We were unstoppable learning how to take care of Larkin and all of her life saving needs. We learned how to take care of her G-tube (feeding tube) we learned how to do trach care and also how to change the trach as it needs to be changed every week and sometimes more than that. We learned CPR and how to bag her if she was in respritory distress. All these things we were learning were scary but Larkin was worth all this new knowledge that I thought I'd never in a MILLION, BILLION years ever need to know or want to know. Because of course I was not ever going to have a disabled kid, I had four healthy ones at home! Yeah right!
I'm not going to lie...I thought about Larkin dying lots of times....like everyday for two years...it made me sad and I would cry. I think it was after we hit that two year milestone that I started to relax a little bit. Now we just take one day at a time.
(Colton, Tatum, Larkin, Skylar & Stratton)
So the point of this post in the first place. After reading the blog of the newly diagonosed little girl I was kinda taken aback that her family thought kids on vents were not happy. I was really shocked because I can tell you that that isn't the truth at all!! Larkin is SO happy and brings so much joy to everyone that knows her and I have the pictures to prove it! LOL She's on a ventilator but so what! She can breath and doesn't struggle....that makes us all happy!! So here they are.....sit back and enjoy because I have about 20 pic's to share.
It was hard to just pick 20...I had over 10,000 to choose from...oh my!
We called this the Hershey's Kiss hair do! Isn't she just edible?
Though Larkin has never been swimming we wanted her to have a bathing suit. She sure is pretty and looks happy to be showing her sweet BIG little belly! Strike a pose sista!
In her bean bag hanging out with the mom. We love spending time playing, singing and just loving on one another.
Could she smile any bigger? She doesn't look sleepy....
With Great Aunt Betty....She makes all of Larkin's blankets, sheets and burpees that we LOVE so much. Aunt Betty lives in Arkansas so visits are few and far between but we love it when she's here.
I'm wondering what she was laughing at? She is so funny....I'm sure she thinks mommy is weird and was laughing at me:)
Sitting on brother Skylar's dirt bike! That was one proud brother and they both loved the photo shoot so much.
Notice she is in her dirt bike gear....also in the picture below. Sky buys all of her riding attire:)
She has to wear a
bow of course.
I'm a little bumblebee...buzz buzz
My second Halloween
Mommy and Larkin photo shoot. We LOVE photo shoots!!
(she still is trached but it's under her outfit...we are sly)
Christmas card photo
My Grammy and Buddy on my 5th birthday. I share a birthday with my Bud and we think that's really cool!
This is what I love to do most....hold my wonderful daughter. She is so amazing...we are looking out her bedroom window.
Okay....This is our signature pose! I love her little pug nose.
This is the picture that we submitted to a cutest Valentine contest and guess what? WE WON...boo ya! Or should I say Larkin won....but those are my lips on the side of her face so technically I won too:) hahaha
Larkin loves to be outside looking at HER tree.
AND FINALLY.....HERE IS THE BIGGEST REASON THAT LARKIN AND OUR FAMILY IS SO HAPPY....scroll down and take a look.
<3 LOVE <3
Skylar just scooped her up.
Tatum giving Lark a kiss before she heads out to Prom
Stratton and his wittle sissy! XOXO
LOVE this one.....she squints her eyes...Is she afraid of Colton? haha
NO....She loves her some Colton.
What would we have been like without Larkin? What would we be doing today? Would I still be working? Would I still be sad? Would I be depressed? What? Well, thankfully I don't have to wonder about those things because Greg and I fought for Larkin as we would fight for any of our other kids. We are enjoying the precious time we get to love Larkin. Only God knows how long each and every one of us will be on this earth and I'm just happy that he is allowing us to still have her.
I count my blessings each and every day for my husband and for each one of my children.
WE ARE HAPPY!!
.JPG)
.JPG)
.JPG)
