Lengthening!

We are just finishing up our first week of lengthening and physical therapy 3 times per day.  Sadie is doing extremely well!  After leaving the hospital last Thursday, Sienna came back from Grandma and Papa's house in Naples and Jimmy went back to Ohio.  We are trying to settle into a routine here and are very busy with all of our lengthening work and schoolwork!

Each day, we go to physical therapy at the hospital with our favorite therapist, Vanessa.  We know Vanessa from the past few years of coming to therapy for Sadie's hip at the Paley Institute.  She has taught me how to do the exercises and stretches so I am doing them with Sadie myself 2 times at home per day.  I also put an allen wrench they gave me into her fixator and turn it 4 times per day.  We also have to take a shower every day and wash the pins on the fixator out with the shower wand and antibacterial soap.  Lastly, at night before she goes to bed, we have to put a knee bar into her fixator that keeps her knee straight all night long.  This is very uncomfortable for her and the nights have been our roughest time for sure.  She wakes up a few times per night whimpering in pain. :(

At the end of the month, we will have an x-ray done and appointment with our doctor and they will be able to tell how much bone we have gained so far.  The max we can get is 8 centimeters, so that is our goal!  They tell me that it gets hardest between 5 and 8 cm. 

A few mishaps: one day Sadie unscrewed her knee bar herself while she was on the toilet and one of the bolts fell into the toilet!  Thankfully she didn't flush it and I was able to fish it out with some tongs.  Another day, I was trying to get some work done and Sienna got into my purse and LOST the allen wrench we need to turn Sadie's fixator.  Of all things to lose!  I eventually found it after about 20 minutes of searching high and low but it was a hectic 20 minutes, lol! 

A highlight of our time here is that our friend Lauren lives here and has visited and helped us out so much!  The girls love her little boys who are the same ages and we are so happy to be able to spend time with them while we live here!

We are looking forward to a special Easter egg hunt we found at a church in West Palm Beach tomorrow that has a separate hunt for kids who have trouble getting around.  We are trying to go up to Disneyworld for Sadie's birthday and then our friend Steph will visit us! 

More updates and pictures to come but here are a few from the past week.

Recovery

Look at that brave smile!! Surgery went well and as expected, but Sadie has been in quite a bit of pain ever since.  Morphine helped last night a few times.  She is very happy with her new dolls that Jimmy got her!  She also got out of bed today with a physical therapist.  One day at a time💕 #sadiesshow

 It is quite the piece of hardware on her leg!  It goes from her hip down to below her knee.  I will post pics once she is up and walking.  Sadie is requesting mail though so anyone who would like to send get well wishes, she would love to hear from you!

In pre-op

Florida Sun Makes Everyone Happy

We've all arrived to Florida and have been enjoying our time so much over the past few days!  I lost count of how many people have asked us since we started our journey at Cleveland airport if the girls are twins!  We've done lots of swimming at our beautiful pool already and even an ice cream date with our West Palm Beach friends, Lauren, Dylan and Brody.  Sadie and Dylan have known each other since they were babies and I planned his parents' wedding back in 2010!  So thankful we have stayed friends all these years and that they live here!



Sadie is in extremely good spirits.  The girls just love Florida so much, staying in our condo, and she is truly excited for the surgery.  Yes, you read that right!  She's squealing with excitement about all of it.  She is really happy about making her leg longer.  I think that all of our going away parties, cards and gifts over the past week helped build her up.

We had all of our pre-op appointments today and it only took 4 hours!  That is good timing since Mondays are very busy days at the Paley Institute since it is the only day he schedules regular clinic check-up appointments as he is in surgery on all of the other days.  Surgery is tomorrow morning and should last about 4 hours.  In the limb lengthening process, the surgery can be considered the "easy part" because the real work comes over the next 4 months, as we do physical therapy 3 times per day and turn the pins on her external fixator 4 times per day.  We should be in the hospital for 2 nights depending on how she is doing.  She will get a new walker, a wheelchair and maybe crutches.  Sadie has named all of these items:
"Peyton" will be the external fixator they are putting on her leg tomorrow
"Sabrina" will be the wheelchair
"Summer" will be the walker.  Or crutches.  I'm not quite sure as she keeps changing those names but we'll find out soon enough.  We plan to decorate them all with colorful duct tape and being the shopper she is, she is so excited to get all of these new things.

Dr. Paley looked at her hip x-rays and measured the movement and abduction of her hip and had a huge smile on his face saying how impressed he is with her hip.  I told him thanks to you!  Then he had Sadie walk and run down the hallway with her brace on and he took a video of her with his phone.  She loved that!

The Paley PA we met with today and the patient coordinator both gave me words of advice for our time ahead.  I was a bit concerned after talking to him since HE was concerned I will be here by myself with the girls without someone here to help for the duration (he doesn't even know I have to work too!) dealing with all of this.  We will see how it goes and I'm prepared for the worst (but expecting the best) so anything should be easier than that, right?  

Here are some pictures of our going away celebrations and our time in Florida so far.  I'll write another update after surgery from the hospital at some point when I can get to it.
A huge thank you to all of our supporters!  It means so much to Sadie and to our family.

 

Everyone's fave, Katie, driving us to the airport!

  
Doritos and froyo for a dinnertime snack during our layover:)





     Sienna had a bit of a meltdown as we boarded our 2nd flight of the day and I had to dig out an old pacifier (foofer as she calls it) from my purse.   LOL!

Our "Brave Sadie" playlist we've been listening to!