Sunday, October 20, 2013

Let's get ready to LENGTHEN!!!

It has been a Looooong time since I posted....however, no news is GOOD news! Right?!

We have had a great year with the kids, watching them grow and learn new things.  Nash has mastered riding a trike, scooter and his 4-wheeler.  He's really good at T-ball, soccer, and loves running and jumping off of EVERYTHING! (which scares us half to death).   He started pre-school this fall and LOVES it!  He's learning so much and becoming a very sweet little man.  He is very helpful when we clean up, he goes potty and washes his hands all by himself.  He wants to do lots of things all by himself now but he still runs into my arms and yells "MOMMY"! when I go pick him up from school.  He's been a mama's boy lately and I LOVE it!!!

A couple months ago at Nash's 3 year check up, his Doctor found a small hernia in his groin.  He ended up having surgery for it and it went very well.  He is such a good patient...thankfully! Our sweet little Super Nash gets stronger all the time. He's such an inspiration...Love him!

RUNNING!!!

Vacation at the Ozarks


Going into hernia surgery

First day of Pre School




Helping her big brother






My LOVES




Hattie is growing so fast, too.  She walked at 9months and started climbing about the same time!  She climbs whatever she can and stands on top of everything!! Thankfully she doesn't jump off like her brother...YET!  She is a tough little girl who likes her dolly's but plays with cars and trains too :) She loves her big brothers and they adore her.  She is definitely a Daddy's girl right now...and he LOVES it as well :)  She has been talking a lot lately and will repeat anything you say.  My favorite is when we go get her out of bed in the morning and as soon as we walk in her room she says "Morning"!! Then immediately asks for Nash :)  We go wake him up and she crawls right into bed with him and they giggle and snuggle <3 SO SWEET!!
Lil Climber!

Daddy's girl


 
 
 

Aidan just turned 10 and is so smart! We get to see him as much as his busy schedule allows.  He plays football and is in school now so living 5 hours away from him is hard!! We miss him but enjoy him so much when he is here :) He loves riding his bike, hanging out with his friends, and playing video games these days.  Pretty typical for a 10 year old. Nash and Hattie LOVE having him around. He's such a good big brother!! :)
Catching fish at the Ozarks

Best Buds

Father's day 2013

NASH UPDATE:
We had Nash's one year post-op x-ray with Dr. Lindaman in Des Moines the second week in September.  He said "The new bone looks rock solid" WONDERFUL news! We sent the x-rays to Dr. Paley and he responded with "X-rays look great. Have you scheduled his lengthening"?
After lots of research, Chris and I decided on the time of year that would be the best time for us to go, and we DID get the surgery scheduled!!

Nash's first lengthening surgery will be May 8, 2014

Dr. Paley responded, "Perfect Timing". Phew!! Now we have a solid plan.  He said we should plan on being in Florida for 4 months.  Chris and I and both kids will be going the whole time.  Hopefully we will get Aidan there once, maybe twice.  ANYONE else who wants to come visit/help will be more than welcome and we even have a place for you to stay :)
1 year Super hip/Super knee post-op

What we know for sure: Nash will have an external fixator on his right femur. He will have at least 11 metal pins in his bone attached to the external fixator. Eight in the femur and 3 in the lower leg. He will have intense Physical Therapy every day at the Paley Institute and other stretches at home along with extensive pin care to keep the pins clean and hopefully no infections. It's pretty common to have pin site infections but they are painful so we will try very hard to prevent them!  We will be turning the external screw a few times a day to separate the bone and new bone will grow in between... 1mm at a time. Our goal is 8cm which is about 3 1/2 inches.  That will put both of his feet on the ground!! We will get x-rays every 2 weeks so they can keep a close eye on everything and make sure new bone is actually growing.

As of right now, they suggest to stop reading up on other peoples' blogs and experiences, etc. Its just better to go in knowing what you need to know and not worry about other complications that may or may not happen to you.  For me, this is good advice because I'm a worry wart!! (understatement) So we are just going to do what we need to do to get ready for our trip and ask questions when things come up :) We have such an awesome support group on Facebook and we even know our friend, Jake, will be there having his lengthening at the same time!!

 My sister, Annie, is planning our second annual "Lucky Leg" benefit this year and it will be November 9th at Thomas Park in Marion, IA. We are excited to have another fun day to see our family and friends and hopefully raise some money to help with our next big trip and surgery.  We can't even begin to express how grateful we are for all of the support we have been given already! We are also getting new t-shirts this year too! They are Black with Chrome writing. I will attach some pictures and if you want to order one for our little man, let me know :)

cosmocaroline@yahoo.com
Our online fundraiser is: Nash's Lucky Leg Fundraiser www.Giveforward.com