Exciting news and FAQ's

I will start with EXCITING news...We are expecting another baby!!  We're due on May 14, 2012. Obviously this isn't new information, I just haven't put it on the blog yet... so here it is! We are happy to be expecting a baby GIRL!  Nash and Aidan are very excited!!  They will be amazing big brothers and she is already loved soooo much. :)

Our other exciting news is that we have Nash's first surgery scheduled!  It will be August 7, 2012, in West Palm Beach, FL.  Dr. Paley will be performing the Super Hip surgery.  The surgery will be sponsored by the Paley Limb Lenthening Institute as a tutorial, or a teaching surgery.  There will be 10 other surgeons in the adjoining OR observing Dr. Paley perform and narrate the surgery. They chose Nash because his is a "basic" Super hip surgery, so its not as complicated as some are.  We are excited about it because that means the surgery will be documented so if we want to watch it someday, we can.  I'm not sure I could watch it, but if Nash wants to someday, it will be there for him!  It will also be used to teach other orthopedic surgeons how to perform the Super Hip Surgery.  Very Cool!

FAQ's

Does the new baby have PFFD? 

NO. We found out about Nash's leg at our 20 week ultrasound and there were no signs of it with her. We knew there was a very, very slim chance because it is so rare and non-hereditary, so we weren't really surprised.  She is growing great and we are ready to meet her any time!

How long will you be in Florida for this surgery?

Two weeks. 

What surgery is this?

The first surgery is the Super Hip surgery.  It's the first of many in this process.  Dr. Paley will reconsruct his hip and top of the femur to stabilize it for future leg lengthenings.  It is an 8-10 hour surgery. Nash will be in the hospital for 3-4 days and the rest of the time we will stay nearby. He will have a spica cast that will eventually be removable for bathtime.

How long will he have a cast on?

Six weeks after we get home. Hopefully we won't have to go back to Florida to get the cast removed but we will find that out later. 

Does "sponsored" mean the surgery is being paid for?

WE WISH!! But no, It just means that it will be documented for future teaching purposes.  We still feel lucky to be a part of educating other doctors and surgeons.

When is the next surgery?

If all goes well and everything heals correctly, we will go back in a year for our first lengthening!  (That's the one where we will be there for 4 months)

Super Nash Fund

The Super Nash Fund is something I feel very humbled to write about.  Ever since Nash was born, we have had a lot of support from people.  What surprised us was the people who wanted to help financially.  Family members have offered and some friends as well.  I am a hairstylist and I even had clients giving me "extra tips" for Nash.  Chris and I were accumulating money for our little guy and decided we should start a savings account.  So we did!  We named it the 'Super Nash Fund' and it has been growing little by little over the last year or so.  A few months ago, the girls at my salon approached me and asked if they could do a Fundraiser for us.  Honestly, I was surprised and kind of uncomfortable.  I wasn't sure about it and it was just so foreign to have something so generous done for us.  They were all so excited, so we agreed!  All the girls and I had t-shirts made that said "STYLIN' FOR  SUPER NASH" with a picture of him on the front and a Super Nash "N" on the back.  We all wore the shirts once a week between Thanksgiving and Christmas.  I made a flier about Nash describing his condition and what his future holds (as far as surgeries and lengthenings).  We put them at each station so the girls could tell their clients about our little hero.  I actually loved hearing all of the girls tell our story.  I just felt so loved and could tell they truly cared.  The whole fundraiser was such a success and our little account began to grow!  Its a wonderful feeling to know that people care and want to help us. We have a good start to saving the money needed for this long journey.  We are Grateful beyond words.
 

"Styling for Super Nash"
All my salon girls :)
THANK YOU!!!

Since the Fundraiser at the salon, we have had other donations as well.  One significant donation was from the Pella Business Women from Pella, IA.  My mom is currently the president of this group and the members decided to make a donation to Super Nash Fund. What a blessing that was too! 
All of this has shown Chris and I the amazing generosity of people around us and we are truly thankful.  It has been such a great feeling and we hope to be able to pay it forward to others. 
Thank You Everyone!!

Oh yeah....He's walking now!!!

Well, It's been a couple weeks of practice, but Nash is officially walking!!!

  We put the lift on his Jordan's and he just took off! :) He is 15 months old now, so that is pretty good for his length discrepancy.  We have been working with him a lot and he is getting stronger every day.  He even took a few steps without his shoe!  We got some video tonight of both so here it is :)

Meeting Amos and Madi!!

Nash, Amos, and Madi
Iowa PFFD kids

When I first contacted Dr. Paley's office to schedule an appointment, they told me they had been treating two other kids from Iowa with PFFD.  I was surprised and kind of excited to know there were other kids and families nearby going through the same thing we were!  The said both families lived in Des Moines and the kids had both just finished the Superhip procedure.  We exchanged information and I got in contact with the moms, Heather and Lori.  I was so excited to talk to them and ask A LOT of questions. Thankfully, they have both been absolutely wonderful families and very willing to share their experiences with us. We have kept in contact through Facebook over the last year so I have been able to follow their journeys as well. 

We all decided to meet a couple weeks ago in Des Moines. We were SO EXCITED!!  The kids' names are Amos and Madi and they are absolutely amazing.  They are now both finished with their second surgeries.  Amos had his first leg lengthening this summer. He was in Florida for about 2 months for the lengthening and is very close to getting his fixator removed!  Madi had another hip surgery this summer because Dr. Paley wasn't satisfied with the bone growth from the first surgery so he added a little more.  She will have her first lengthening a year from now!

It was so nice to hear about all of their experiences and how they have gotten through it all.  To say the least...its not gonna be easy.  But now we have a better idea of what to expect.  From the surgeries and after care to where we can stay and which people to talk to about certain questions we have while we're there (insurance or medical).  Not to mention all of the "things" we will need... like a special car seat, a very tiny wheel chair, and special pants that are easy to put on and take off (in Amos' case, they just use a kilt :).  The kilt is actually a great idea when you have a large fixator you have to work around! 

The best part for me was to watch them play with the other kids.  Amos has 2 brothers and Madi has a sister.  We also had Aidan and Nash with us so there were a lot of kids!  You would have never known Amos had all those pins in his leg (I think there were 11 to be exact).  He was playing right along with everyone and so was Madi.  It was nice to see a glimpse into our future.  Especially since it was an encouraging one.  I'm so thankful for meeting these kids and their families and I hope we get to be each other's cheerleaders for a long time. :)

Getting closer to walking alone!

Well, its been a couple months since the birthday party and we have been practicing walking every day!  He's getting much better with the walker and is SO CLOSE to taking his first steps alone. I got a little walking on video tonight while we watched daddy mow the lawn.  He was kind of distracted with the mower but at least you can see a few steps  :)  Enjoy!

Birthday Boy

This last weekend we celebrated Nash's very first birthday!!  We had a party at our house and invited all of our family and a bunch of friends. We had about 45 people who came to help us celebrate our sweet baby boy :)  We had a Barnyard Theme with cake, balloons, and a big sign in the front yard!  It was  probably a little over the top but he only has his first birthday once...RIGHT??  He was pretty overwhelmed with all the people in his house, but he had fun with his friends and all of his new toys.  I'm pretty sure we could start a day care with all of the toys we have....holy moly! 



Party cake and cake pops









Aunt Annie and Aunt Teresa

Great Grandma Van Zante

Messy kid :)

Nash had so much fun smashing his cake at his party, we got him another one to smash on his actual birthday, too.  What a lucky guy! :) 

Birthday smash cake



I'm ONE!



Who's the birthday boy?



Can I please have my cake?!?!



SO BIG!!





Grandma Laura and Nash saying "I'm ONE"







This last year has gone so fast.  I feel like the hours and days flew by like seconds.  The sleepless nights and long days are overshadowed by all of the smiles, giggles, and hugs and kisses.  Chris and I have been blessed with a very sweet, mild-tempered, strong, and determined little man.  We can't wait to watch him grow and learn and show us more of his fun little personality.  Here's to another year Baby Nash!!!!! We Love you Buddy!!!   Forever, For always, No matter what!!  XOXO





Standing alone!!

Just wanted to show some new pictures we took today of Nash standing all by himself!! He has been doing it a lot and I finally caught it on camera :) We're so proud!!!  



Way to go buddy!!



Showin off his baseball  :)



He looks so tall here!

  It was a HOT night tonight but we went to watch Chris play softball anyway.  Nash took a break from showing off his new 'standing' skills and sat with his grandpa Stew for a little bit.  By the end of the game they were both making monkey noises...oooh oooh  aaahh aaahh!!! Couple of goofballs :)


Watching Daddy play softball with Grandpa Stew