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



Trying this walking thing...

We've been practicing walking a lot lately and he's getting really good at it.  He even let go a couple times today and was standing alone!!  He seems to like the shoe lift better, and walks around more, when I don't put his left shoe on so whatever works!?!  He's doing great!!! He even put a few dance moves in there for ya! :)

X-Rays

PFFD
Type 1b

These are the X-rays of Nash's femur.  You can tell that the right side is definitely shorter than the left.  The top of his right femur is almost at a right angle and his left one is normal.  The hip joint on the right is flat as opposed to the left, which is rounded.  That will also have to be corrected.  That is what the Superhip surgery will do.  (That's the first surgery we will be doing next fall and the reason we're going to Dr. Paley)  I hope this gives a better idea as to what is going on.


Nash is doing great with his shoe!  He's walking along the funiture already so we're very happy he's getting used to it.  I'll try to get some video of it and post it...its super cute :)

Shoe Lift

We got the shoe lift today!  The ankle brace came in last week so we practiced wearing that all week.  It fit perfect and didn't seem to bother him at all! We found some shoes that fit over the brace and brought them in to Travis.  He made the lift today while we waited.  Its exciting having both feet on the ground, he just has to get used to it.  The shoe lift is pretty bulky so our goal is to get him to stand on it first, then when he gets used to it, we can narrow it a little.  Hopefully within a couple weeks he'll start taking a few steps?!  Don't worry, I will let everyone know because I will be SO EXCITED.  :)



Superman Brace





This is fun!



Close to letting go







Nash and Daddy