Sunday, July 27, 2014

Mini vacation-a birthday celebration


We got to escape for the last few days to celebrate Keith's 37th birthday and take a break and just enjoy being a family. We went to the Villas, NJ, right between Wildwood and Cape May, thanks to some awesome friends who let us borrow their home.

We had a great couple of days and enjoyed our time together. Our first day was so overcast and we weren't sure if it was going to rain or not, but we ventured down to the bay anyway. The boys absolutely loved playing in the sand (much to Mommy's dismay).



And what a difference a year makes!! JP was able to walk, no... run, on the beach! It was such an amazing and bittersweet moment to watch!

Before JP was born, I took for granted Aiden's ability to play on the beach. Last year, I had sad moments from time to time that my son couldn't play like his brother or other 18 mo olds. He couldn't explore the beach or ocean like the other kids around him. But this year when we got to the beach and he took off, it took my breath away. 

It was in that moment that I realize the struggles, the PT scheduling complications, the many tears (I) shed, we're not in vain. We had made the right choice!


I just loved watching Jonathan play & follow his brother around and not needing our assistance. I did notice, he got tired, he had to work extra hard and at times was done and decided to crawl, but he never complained and loved ever moment and it made it all worth it!!

It was also JPs first time sleeping in a bed!! The littlest member of our clan got the biggest bed! He did great too! The first morning he woke up early and crying for his bed, but when I came in and laid with him he was fine. The second night he slept 12 hrs!!

Aiden, as always, did great! He was excited to be in a different environment, to be at the beach, and couldn't wait to go on rides!!


After a nice ( birthday) dinner, we went up to the boardwalk and the kids got to explore the rides. JP was older this year and could do more, but Aiden didn't care to have to share the rides with his brother. Keith and I did, however, appreciated the 1 to 1 ratio of parent to child.





On Friday, we headed back to the beach in the morning for some more sand & jumping waves fun. 


The kids even made friends with a dog name Dolly. She was a pretty and very well trained dog. Her owner was throwing a ball out into the ocean and she would go fetch and bring it back. The kids loved watching her. Dolly's owner was nice the let the kids throw the ball and play with her too.

Then after lunch we headed to one of the boardwalk's water parks,  which might have been my favorite part of the trip! When we started out, it seemed like a bad idea. Aiden loves the pool, but hates to get his face wet and all the kiddie attractions were things that sprade or shot water. He also had no interest in doing the kid water slides, but after about 30 mins he got into the attractions and started doing some of the slides. We were so proud of him for going outside his comfort zone and trying! 

JP on the other hand dived (almost literally) right in. It was a bit hard for him on some things because slippery surfaces seems to be a bit of a challenge with his uneven legs. It didn't stop him though! He had us giggling and reminded us yet again he has no fear. JP was going down every water slide, he would then sit down in the water and try to float and he loved every second we were there.

We ended our day with the kids favorite dinner- pizza! We then let them do a few more rides before we packed up and ended back home. All in all it was a great trip and we are looking forward to our real vacation in a few weeks!!






Wednesday, July 2, 2014

So far, yet so close


Last week, Jonathan went for his 4 month orthopedic follow up. He had a few X-rays and was examined by his doctor. Her response was "what a beautiful leg", and we couldn't agree more!! She said his bone had healed wonderfully and we can see that!

What a difference 6 mos makes too! JP now goes through X-rays and visits with no tears, not much  movements, and no problems!  Of course we have the iPad playing which also helps! On top of his current AFO (which we had to have extended because his little foot is growing!!), Jonathan will also be getting a SMO on his left (non FH) leg. He is getting a SMO because his non FH foot tends to roll out due to over compensation, so we are hoping this helps him with it.


We are ready to start thinking about the next phase- legthening. Jonathan's leg is ready at any time, but Mommy and Daddy are not there yet. We are thinking about starting legthening next spring, right after Jonathan turns 3. 

With the next surgery, comes new terrority for us as FH parents- the external Fixator (the pic above). We almost feel "gypped" because his first surgery only dealt with castings. So now we will learn the joys and sorrows of Pin turns, pinsite infections, and altered clothing. Our hope is the gain 5 cm in Jonathan's leg /bone, so it will be 5 months in the ex-fix.

 Jonathan's current leg difference is measuring between 7-8 cm, while it seems like a lot, nothing holds this kid back. He's adventous, curious, and just plain crazy!  And while this Mommy has a lot of anxiety about the next surgery and the "ex-fix", we are loving all the amazing moments of everyday life with our sweet boy for now!