Florida, Here we come!!

Another long break between posts....It just means we are all doing well, enjoying each other AND loving the warm weather here in Iowa...FINALLY!!! It was a long, bitter cold winter and the warmth and sunshine we've had lately has been great for all of us!

We had the 2nd Annual Super Nash Lucky Leg party in November and it was awesome...AGAIN!! We know so many wonderful people that have worked so hard to support us. I'm very proud and excited to have such amazing people in our lives and in our kids' lives. Thank you ALL!!!!!

After the Benefit, we enjoyed our holiday season.  Nash attends Little Lambs Christian Preschool and he had his very first Christmas program!  He did so good and was such a little man. He's also been learning how to spell his name, learn his ABC's and his colors. His teacher told us that he is one of the few kids in his class that is really good about saying "please and thank you".  We're so proud :)

Hattie has learned to talk A LOT more and is quite sassy! She is super cute though and has her daddy wrapped around her little finger...and all the other men in her life.  She's quite the charmer! You would think she's a Princess except she likes to eat strange things...like chalk, play doh, chapstick, dirt and sand. She also likes to sleep like Al Bundy...with one hand in her pants... Goofball!! I'm just so glad that Nash and Hattie are so close.  They Love playing together.  I always ask Nash who he likes to play with at daycare and he always says "Hattie, because she's so funny, mom"  Love it!! One of their favorite things to do is play superhero's together... ADORABLE!

Aidan is growing up way too fast, too. We love when he comes to visit us! Nash got a new bed and he insists that Aidan sleeps with him when he's here.  It's so cute.  Aidan will tell him bedtime stories and Nash sleeps so much better when his big brother is here. He's getting older so that won't always be "cool" but for now, its priceless :) We just had to say goodbye to Aidan yesterday and won't see him again until June 8, when he comes (with Uncle Steve) to see us in Florida! That's almost 2 months away!! 

We are currently less than 2 weeks from leaving for Florida.  We leave on Sunday, May 4 and we will be in Florida until September.  We will be staying at a friend's house for the first week and on May 12, we move into the condo we are renting for the rest of the summer.  I really want to say thank you to my friends Nick and Tiffany Conrey, Courtney Siders, and Dave & Karen Petrus and family.  These amazing people have been wonderful and so very generous for offering their homes to our family to stay in while we are in Florida. Thank you so much!!

I also want to thank our friends Matt and Katy for staying at our house this summer while we are away.  What a weight lifted off of our shoulders to not have to worry about our home while we are gone. Thanks guys!!

We have a busy week the week we arrive in West Palm Beach. Monday, Nash has x-rays and an appointment with Dr. Paley to talk about the surgery. Thursday, we have an appointment in the morning for Pre-op blood work and to sign lots of papers.  In the afternoon we have another appointment with Dr. Paley for a clinic he is holding.  There will be 5 other surgeons there and he will be teaching them about the MRS system (fixator) he uses for bone lengthening. He will show them Nash's case, including a power point of all of his past x-rays and surgeries.  They want Nash to be there to watch him walk and to talk to him. Pretty cool!! He's a SUPERSTAR!

Friday morning, May 9, we have to be at the hospital at 6:30am for the big surgery. It won't be as long as the hip surgery so recovery will be much easier on Nash (and his parents).  We will be in the hospital for 3 days and when he gets out,  we move into our condo!

I will post updates as much as possible while we are there.  I created a page on Facebook as well to post updates. We appreciate all of your love and support and will need lots of prayers, good thoughts and positive vibes coming our way in the next couple weeks, for sure, and the rest of the summer!!


 

Playing superhero's

Snuggles

Christmas program..He's in the front bottom right :)

Priceless

Just fightin Bad Guys!

Goofballs at the Lucky Leg Party

Uncle Chad

Stina and baby Leah

Nash and Gavin's Strong muscles

Family pic

Our amazingly talented face painting artist, Lizzy!

Display of Nash's shoes and cast, pictures and posters

Bags Tournament

Cupcake contest judges
Uncle Bruce, Grandma Donna, Alexis, Rachel and Stella

Me, Hattie, Jovi and Alexis

Annie, Michelle and Amber...The ladies who make this day happen!!
(And Stina!!) 

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

     

Trip to Florida in February

 Our latest trip to Florida was at the end of February.  We went to see Dr. Paley for Nash's 6 month Superhip post-op X-rays.  My sister, Annie, Nash and I went and we had a BLAST!! Chris stayed home with our little Hattie.  She came down with RSV right before we left so he gave her lots of love and snuggle time. She was all better by the time we got home!

We landed in Florida on Saturday afternoon and it was sunny and beautiful.  We were on the way to the hotel and Nash had been SO EXCITED to go swimming and he hadn't stopped talking about it for days!! He tried so hard to stay awake, but by the time we finally got to the hotel, he was zonked out.  We let him nap for a little bit but as soon as he got up, we went to the pool.  It was getting kind of late and the sun had started to go down.  We were the only ones in the pool but by golly, he went swimming :) While we were at the pool, we got to meet a little girl named Kaylee.  She had just finished her Superhip surgery a few days before so she was at the pool in her cast. I got to meet her grandma, Sandra, and her mom, Ashley. They were such a wonderful family and it was so nice to talk to them.  It felt good to talk to them because I could finally return the favor of giving advice to someone going through something we had already endured.  Kaylee was such a sweet little girl, I hope we get to see them again sometime!

Sitting with Annie on the Airplane

All ready to go!

Finally got to go SWIMMING!!!

The next day we had the whole day to goof off.  We decided to go to the Zoo first and then the beach.  He was BEYOND excited to go see all the animals. He wanted to see "lions, monkeys, elephants, and a polar bear"! We didn't see any of those, but we DID see turtles, all kinds of birds, alligators, a jaguar, snakes, lizards, a peacock, an owl, deer, and a few other animals. He was thrilled :) He still talks about it!  

 

Next was the beach.  It was PACKED!! It was a beautiful, hot, sunny day. It was absolutely perfect.  Nash had such a blast and so did we.  It was fun just watching him enjoy the beach so much.  He even buried our feet in the sand. It was a little hard for him to walk around in the sand so he fell down a lot.  He didn't care though...we just went to the water and washed off and kept on playing!

 

After the beach we went to meet our friend, Sarah. (Nash's girlfriend) She works at a restaurant near the beach.  It was AMAZING food, a fun visit and Nash got to see his girlfriend :) It was a perfect way to end the day.

 

Looking at some pretty cool birds at the Zoo

 

The Owl

My sweetie

Having so much fun!!



Burying Annie's feet

At the beach getting dirty

The Polar Bear we found at the Zoo!

Eating dinner with Sarah :)



 

Monday was the big day for the appointment.  We were up pretty early so we went to the pool. Then we played some mini golf and spent the rest of the morning 'looking for lizards'. Nash had a new obsession. Those little lizards are everywhere and he was just tickled when he saw them :)

 

We went to Nash's appointment at 1:30pm. From our past experience at the office, we were prepared to be there for a while.  After playing in the waiting room for about 30 minutes, they called his name to go get x-rays.  We all went into the x-ray room and took a couple pictures.  When we went to go sit back in the waiting room, we could hardly sit down and they called us back. We sat in a room for about 10 minutes. A woman named Jennifer Scott came and introduced herself as the "Family  Care Coordinator".  The funny thing was, I recognized her because she was one of the VERY first people to reach out to me after I joined the PFFD.org page.  It was a "support group" for other PFFD families.  Her daughter is a couple years older than Nash and she just finished her first lengthening.  Jennifer said she just decided to move to Florida so she could help Dr. Paley and other families like hers. She was very helpful and super nice!  She will be a wonderful person to contact in the future for planning and support. 

 

Shortly after we were talking, Dr Paley walked in! He had 2 other doctors following him that day and a PA.  They were looking at the x-rays and talking to each other.  I couldn't hear what they were saying but what I did catch was "Amazing Recovery"!! Dr. Paley was extremely happy with how Nash had healed and his Range of motion was really good.  The doctors were even joking because one of the positions he compared to Nash's other leg, and his "superhip" side had better ROM!  It seemed like he was pretty proud of that :) He let me ask a lot of questions and he answered them all.  He is a man of few words so you have to have your questions ready.  The main question was "Is he ready for lengthening"? The answer is, yes. He will be ready in August, 2013. He also said it is our decision when we begin the process.  He said it would be best to do it between his 3rd and 4th birthday. All of this was wonderful news!! We couldn't have gotten a better report. We left the appointment and I gave a sigh of relief.  We got the news that we were hoping for and Nash can just be a kid for another year. 

 

The rest of the trip went fast.  I was so thankful my sister could come and share this time with Nash and me. She got to see where we go in Florida and meet Dr. Paley. I really loved having her there for support and for fun!! 

 

Chris and I are pretty sure we are going to wait until the beginning of 2014 to begin Nash's lengthening process. That gives us a better part of a year to save and prepare for our big 4 month stay in Florida.  Its going to be tough but we are so thankful for the support we have now and the new friends we've made through out this journey so far!!  

 

 

 



Nash and Dr. Paley

6 Month Super hip Post-op X-ray

Dr. Paley Checking his Range of Motion

Playing in the waiting room

 

West Palm 'Beach'

Passed out on the last flight home :)