Sunday, March 10, 2013

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 :)





Sunday, January 13, 2013

2012...What a year!!

 Its been a while since I posted an update so here it is!

We had a wonderful holiday season.  Thanksgiving was here and gone. We got to spend time with almost everyone in our families. It was great! The weather was beautiful and we ate too much. Christmas was fantastic as well. We had a lot of family time and it was the first year Nash understood 'Santa and presents'. He didn't care whose present it was, he wanted to open them all! Hattie just wanted to eat the wrapping paper :)

In the last couple months, Nash has gone from better to BEST! He has been healing so well and feeling so good that he runs faster and faster every day. He even JUMPS off the furniture! Literally!! It makes our hearts stop every time...crazy kid! We have continued PT but he has been doing so well we only go once every other week. Dr. Paley said he wanted to continue it for 6 months and its been 5 already. It will be bitter sweet to stop going because Nash really enjoys it!

Speaking of the 6 month mark, its time for a follow-up! We scheduled it for February 25 in West Palm Beach. Nash will get an x-ray and we will meet with Dr. Paley. He will evaluate Nash and decide when he would like to begin the lengthening process. As I understand it, August would be the soonest we could start. On the other hand, he might want Nash to be a little older so his bones are a little bigger before we do it. It also depends on what Chris and I decide works best for our family. We will know a lot more after this appointment. Lots of decisions to think about!  I was going to take Nash by myself to this appointment, but I convinced my sister, Annie, to come with us!! (It didn't take much convincing to leave Iowa for Florida in February :))

Hattie update: She has learned to not only crawl faster but she walks along furniture and climbs the stairs....all at 7 months old! She is definitely growing too fast! She's 8 months old now and has 6 teeth and just started saying "dada" and sometimes "mama". Nash said "mama" first so Daddy is very proud she said "dada" first :)   She also gives 'kisses' every once in a while, too. (Which absolutely melts her daddy's heart)

Looking back on 2012, we definitely had more highs than lows. The birth of our Daughter, the success of Nash's surgery, and the Awesome Fundraiser so graciously thrown for us...just to name a few. We have so many things to be thankful for in 2012. Hopefully 2013 is just as good for us and our loved ones. We have an amazing army of people around us and we LOVE YOU ALL!!!!




We hope you have a HAPPY, HEALTHY, and BLESSED YEAR!!! 

Tuesday, November 27, 2012

Thankful beyond words

Its been a few weeks since the last post so I wanted to give an update on everything that's happened.  First of all, we had the "Lucky Leg" Party and Benefit and it was AMAZING!!  It was a beautiful fall day at the Park.  There were tons of people who came to support our little Super Nash.  There were 20 teams that played in the bean bag tournament and 10 entries in the chili cook-off.  HOW AWESOME!?!? We had a silent and live auction which were both very successful.  The face-painting, glitter tattoos, colored hair pieces and super hero pictures were all a BIG hit.  I'm pretty sure everyone had a great time.  Nash had the best day EVER!! He had non-stop attention and played with his friends on the playground all day long.  He got glitter tattoos and his face painted like a pirate (his choice) and he wore his Super Nash cape all day too :) When we left to go home around 5:30pm, he fell asleep in the car. We put him in his bed around 6pm and he slept all night long.
Family pic


silent auction

Chili Cook-off

Bean bags

Hattie and me

Nash's aunt Annie
Nash's Grandma Donna :)




Happy little Pirate

Friends!

Nash the "ladies man"

glitter tattoos

Hangin with cousin Wyatt and big brother, Aidan

Live auction

My friend Holly flew here from Arizona and surprised us!!

Grandpa Stew and Aunt Annie


Aunt Teresa, Aunt Annie, Uncle Gary

Ready to party!!

We couldn't be happier with the turnout from the Benefit.  It was a huge success and we are so thankful.  All of the donations raised will greatly ease our financial burden for Nash's first leg lengthening.  This brings me to the next bit of news....  We had Nash's 3 month post-op visit with our local doctor, Dr. Lindaman, in Des Moines.  We went to see him a week after the benefit.  He took x-rays and we got to visit with him for a little bit.  He thought the x-rays looked great and he said the bone was healing nicely!  We really liked him and we are so glad we have him closer to home. We are also happy we have another great person to help guide us in this crazy, scary and exciting journey. 
Dr. Lindaman and Nash

A couple days ago I received an email from Dr. Paley ( I always get really excited when I see his name in my inbox)  He said he got the x-rays and Nash's bone is healing PERFECTLY!  He said we are on the right track to have his first lengthening a year or more after the hip surgery, which will be August of next year.  I know that we will have a choice if we do it then or wait a little longer. We will find out more when we go to Florida for his 6 month post-op in February.

In other news: Hattie is crawling!!! She is growing so fast and gets cuter every day :) She got 4 new teeth on top last weekend! That was a little rough since it was Thanksgiving weekend.  We had a fun time though!  We got to celebrate with my family on Thursday, Hattie and I went shopping with the girls on Friday and we hung out with Chris's family on Saturday. It was a great weekend.  We have so much to be thankful for...we have such sweet little blessings in our life...we are so LUCKY!! 
Happy Girl :))

First time in a shopping cart sitting like a big girl!

Shopping with the girls :)