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.

Tiara is off! And other thoughts...

On March 5, we traveled down to West Palm Beach once again and Sadie had outpatient surgery to have her "tiara" (the external fixator on her hip) taken off on March 9.  Dr. Paley said she has great movement in her hip and we are now back to physical therapy sessions 3 times a week with our buddy Nate at AGM Physical Therapy.

Once again there were "signs" pointing to positivity and I believe that are telling us we are doing the right thing.  There was another little girl at the surgery center the morning we went, also to have her fixator taken off, and do you want to guess what her name was?? Sienna!!  Her parents are wonderful and amazing people who we will keep in touch with now.  They are both attorneys just like jimmy!  She is exactly 4 months older than Sadie and completed her lengthening.  Our anesthesiologist was wearing a Pittsburgh Steelers lanyard around his neck with his ID badge in it (in Florida, remember?).  When we got to baggage claim in the CLE airport, "Home" by Philip Phillips was playing.  If you scroll through my past posts, you'll see back in 2012 I said this was Sadie's song and we still say that!

I felt so much more confident walking Sadie into the operating room this time since I know the doctor is FABULOUS and all of his PAs are too.  They are an amazing team performing life changing surgeries and life plans for children and adults every day.  They all work so hard and put so much of their personal dedication into it.  They give you hugs when you see them.  Going to the Paley clinic feels like we are at the "mother ship".  All kinds of kids wearing fixators, wheelchairs, going through these same medical situations.

We had to be at the Surgery Center at 5:30am, this was the first day after daylight savings time sprung ahead too, so you can imagine what time we had to wake up, basically the middle of the night.  It was a crazy day - imagine your daughter being madder than the meanest monster on TV when she wakes up from anesthesia, complaining about the bandages so much that the nurses change them, but then call when we're finally on our way back to the hotel to tell us the Paley team said she can't wear the new bandages they put on and I had to change them when we got back to the hotel.  Sadie was screaming so loud I am surprised no one came to our hotel room!  Geez.

We did have a sweet moment the day after her surgery. Sadie and I went downstairs to the Embassy Suites "Manager's Reception" they have every night because she heard me talking about it and wanted to put on a dress and go down to the "party". :)  So we went down and they gave her ice cream for free beacuse I was carrying her (she can't walk again yet) and I got a glass of red wine and got her cranberry juice.  Then we sat by this pretty fountain and made wishes and threw coins in it.  It was fun, and when I started wishing she would heal quickly she stopped me and said no mama -- wish for something that you want (all her wishes were books and costumes) so I switched mine to material things too, like a new bathing suit and a big real vacation to Disneyworld. 

Every day is a struggle, to remain positive, to be a good role model for Sadie, to remind her of positive vision for the future, and to try to keep doing fun things although it is pretty difficult getting both of them out of the house and in any public place.  And I'm still working too, and of course we have our sweet 20 month old Sienna with us every step of the way.  But we will not give up.  

The sweet side of our West Palm Beach doctor location is that it is only 2.5 hours from the happiest and most magical play on earth, Disneyworld!!!  We are all Disney obsessed and were able to make a quick trip since we were over the weekend, to the Magic Kingdom!

Sadie is not walking yet and the therapy sessions have been challenging so far.  She does not want to wear her brace, which we also had our awesome prosthetist Dean Frazier of Orthotic and Prosthetic Specialties update since we've been home from Florida to a 10cm difference/lift.  She tells me that princesses do not wear braces and she doesn't want to walk.  I think she just needs a little time and will walk when she's ready.  I tried to stop pushing her too much.  I think it was too much too fast for her first week of PT.  I am so thankful we found Dr. Paley and he and his team offer the services they do.  I will try to post more updates in the near future to keep everyone who checks the blog posted!  Our next step is to do a check-up with Dr. Paley in June so he can see x-rays of how her hip has healed.  This will make our tentative plans for limb lengthening in March - June 2016 definite if all goes as planned!

I am in the beginning stages of planning a few fundraisers to help fund our stay in West Palm Beach with some help from our friends.  In the meantime, enjoy some pictures from our trip, the past few months and some quotes that help get us through our days.  Thank you for your support!!!

"When life gets you down you know what you gotta do?  Just keep swimming!  Just keep swimming!  Just keep swimming!" - Dory, Finding Nemo

"All our dreams can come true if we have the courage to pursue them." - Walt Disney

 "All the adversity I've had in my life, all my troubles and obstacles, have strengthened me... You may not realize it when it happens, but a kick in the teeth may be the best thing in the world for you." - Walt Disney

"A Dream that you don't fight for can haunt you for the rest of your life." - Robots movie