3 new inches! and Consolidation Phase

First of all, sorry for the delay in posting!  I should have been posting little updates all summer but things just got a bit overwhelming and emotional.  I wanted to quickly share an update on our amazing progress so far!

We stopped lengthening at the end of July and Sadie gained 7.8 centimeters of new length on her leg.  That is a little over 3 inches and almost the max of what you can get with an external fixator!  The visual difference is incredible!  We are now in the "consolidation phase" which means her bone is actually growing back together from where we separated it all spring and summer (it's called distraction).  I have to say it was the hardest thing we've ever done in so many ways and very emotional seeing her in pain with me being the one inflicting most of it with physical therapy 3 times per day and the knee bar at night.  But she is very happy with her new leg and just happy overall.  We really enjoyed our time in Florida and I feel the girls and I created amazing memories and a bond together going through something like that.  We learned a lot about being brave and having courage.  It's amazing what happens when you set your mind to be a certain way.  Our overall goal was to be as happy and positive as possible.  Our Brave Sadie Spotify playlist helped us a lot!  Here is a link: https://open.spotify.com/user/22nskxshe4suclbto6c6cpfhq/playlist/5bvyWXYWdukGAcN5OOcjRT?si=ehFbioUi

We flew back to Ohio on July 31.  Sadie started 1st grade on August 17.  Sienna and I drive her to school and pick her up every day because we are too nervous about all of the bumps and movement if she rode the bus.  She isn't allowed to play on the playground equipment at school and also is not allowed to run or jump as her bone is now growing in and everything is quite fragile still.  All her friends at school are taking great care of her and sitting with her at recess.  We are still doing physical therapy 3 times per day (attempting to really get those in), wearing the knee bar at night to hold her leg straight and still have the need to tighten it, and also cleaning the pins daily.  It's a lot of work!  The physical therapy is still quite difficult, as her muscles are very tight.  I try to use the heating pad and a mixture of coconut oil with a bunch of essential oils mixed in as a massage rub.  We also still take a lot of ibuprofen (both of us, haha).  Not sure how much anything helps but we keep trying!

We get x-rays monthly and send to Dr. Robbins at the Paley Institute so he can tell us how her leg looks and when we can schedule the surgery to have her fixator removed.  I'll update more as things progress!  We're hoping for November timeframe for fixator removal. 

Sadie doesn't wear her orthotic-prosthetic anymore because her leg is too long for it!  She now wears a shoe lift.  The upside of that is that her leg is longer and she is much less self-conscious about it.  The downside is that we have to pay for that out of pocket each time we want a new pair of shoes with a lift she can wear - about $60 per pair.  I had 3 pairs made for her before school started and she seems happy with those for now!

For the future, Sadie will need 3 more lengthenings in order to finally have her feet on the ground when she stops growing.  Every other summer, we will travel back to West Palm Beach and do this all over again, for about the next 8 years.  Good thing we're in love with Florida!!  The good news is she can do the next 3 with an internal fixator, which we are told by all the other Paley families who have experienced it that the pain and hassle is much much easier than lengthening with the external fixator, which she wears right now.

We're so thankful for the ability to be able to help Sadie get 2 feet on the ground and eventually be shoe lift and prosthetic free with a fully functioning leg and hip!

Here are a few pics from our 4 months in Florida and beyond!  What an adjustment going from living in Palm Beach Gardens and back to Mentor.

Back in Ohio:

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!

Time for Limb Lengthening....Finally!

It's almost time - finally - for limb lengthening on Sadie's leg!  It really does seem like we have been talking about this and planning it forever.  We have arranged our entire lives around this and it's been a long time coming so we are pretty much feeling full steam ahead!  I'm trying to mentally prepare myself and mentally prepare the girls.  Most of the time, it will just be the 3 of us in Florida together, going to physical therapy, doing physical therapy at home, pin turning, x-rays and doctor appointments.  Hopefully we will be able to do lots of swimming in the pool at our condo and even better if we can squeeze in a few trips to Disneyworld as well!  I know that will cheer all of us up if we're having a hard time!

I'll try to keep the blog updated with pictures of our physical and mental progress.  The two go hand in hand as I believe that physical progress in this situation will not be possible without mental growth as well.  I'm expecting both to have their ups and downs but I wouldn't change any of it!  As they say in the movie Dumbo, "the very things that hold you down are gonna give you wings".  And we'll all leave the situation with one longer leg and a lot more spiritual growth.

Updates to come!

Starfish Story

Back to Therapy, Back to WPB

On June 1, Sadie and I traveled down to see Dr. Paley and team for a check up 3 months post fixator removal surgery.  We had been in physical therapy at home since March and Sadie has been walking again since mid April. 

Good news is her bone is all healed.  Bad news is that her hip does not have the range of motion that it needs to have, and upon hearing that it made sense to me because she does have trouble walking still.  Being the first time I've been through this, I didn't know what to expect and just thought she was still recovering from 2 surgeries, one of them major!!  So Dr. Paley says to me, do you work?  How soon can you get back down here to do 2 weeks of aggressive physical therapy?  (His therapists are unique in their practice because the doctor's practice in general is very unique) so I quickly run my wedding schedule in my head and say after July 11.  He says that's fine and that this should do the trick and he wants to "make a physical therapist out of mom"-which means we have a lot of work to do outside of the actual therapy sessions too.

I felt deflated after that appointment because I was expecting we would hear a positive update but instead it's back to the drawing board to sort out our 4th trip to Florida since November and how to juggle work, finances and family (little kids  under 5) once again.

We realized even though an extremely tough decision, it was for the best that Sadie and I go down by ourselves and Sienna stays here, with family (Aunt Kelly and Aunt Jenny!) and daycare helping Jimmy!  It would be very difficult to bring her to all the therapy sessions, fly with the two of them by myself, etc.  so we are leaving right after we celebrate Sienna's 2nd birthday.  I'm so sad to be apart from her and Jimmy for 2 weeks but I am hopeful that we can focus on getting Sadie's hip where it needs to be so she can:

1- walk with the greatest amount of ease possible while wearing her regular orthotic prosthetic 

2- "graduate" to the next step in our process which is her 1st round of limb lengthening in the spring of 2016

Please keep us in your thoughts and prayers as we embark on this new round of therapy and still do our best to remain happy, composed, focused, and filled with love and enjoyment! ❤️. I don't know what to expect but we do have some fun plans to hang with friends who live in WPB as well as some other Paley patients.  And of course swimming every day since that is very good therapy for her hip I'm told!

Here are a few recent pics and as usual, some quotes I've found that inspire and help tremendously.