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

Update on Sadie's Progress

It's been a chaotic few months but Sadie is doing so well!  She has been walking on her own since right before Christmas so in January we were able to stop physical therapy (although we loved working with our buddy Nate at AGM Therapy at Heisley Racquet Club!). 

She and Sienna actually went back to daycare a few weeks ago!  It has been so nice for Sadie to be around her friends and get out of the house for activities again.

All our doctors say that Sadie's hip looks absolutely incredible.  She will have an outpatient surgery soon for fixator removal, start some therapy again as well as wear a hip brace for a while.

From here, we hope for continued success in this adventure we've been on.  As soon as we get back, I will begin fundraising plans for our next adventure: limb lengthening for 4 months in West Palm Beach.  See the link to the right if you would like to read or contribute at this time. 

Thank you to everyone for your support.  We are all stronger because of this situation and blessed to have each other.

Here are some pictures from the past few months:

Article on Dr. Paley

I found this article published in the summer of 2014 and thought it was a very inspirational and impressive summary of Dr. Paley's work and career:

http://mp.floridaweekly.com/node/11117#.VH5319m9K0c

Our whole situation, the healing and the fact that we are working with such a pioneer doctor is absolutely amazing and unbelievable.

Some recent pics of or physical therapy sessions at AGM physical therapy with Nate, who I graduated high school with.  He is helping Sadie with her hip and she is teaching him about all of the disney princesses.  We go 5 days per week, including 2 in the pool.

Lastly, this song is a good one for our situation : 

https://m.youtube.com/watch?v=FlMBcTGJ4YM

(Defying Gravity from Wicked)

Sadie and Family Update

It has been hard for me to post any update because quite honestly it's been the hardest month of our lives.  I've never felt so deflated and overwhelmed and still am very much feeling the effects of a traumatic past few weeks that is still traumatic.  But things are slowly getting better.  The best of all - and most important - is that it seems Sadie is physically healing very well!  

We went into our awesome prosthetist yesterday, who has been seeing Sadie since she was a year old, and he adjusted her orthotic prosthetic (AFO).  By his calculations, her leg is about 4-5cm longer now, post surgery!  Wearing the adjusted prosthetic and using the walker will get Sadie back to being independent and getting around by herself with her walker within a few weeks.  Currently, we still have to carry her around everywhere and if she is walking with her walker we need to hold on to her and walk with her from behind.

I was able to get physical therapy set up at a place close to our house.  We will go 5 days per week and our local orthopedic doctor from Rainbow will coordinate with the therapist.  We will do monthly X-rays and checkups with our local ortho and email to Dr. paley so he can monitor the healing and let us know when we can make the trip back down to West Palm Beach for fixator removal surgery.

We are trying to remain positive.  There is no instruction manual for dealing with this.  Sienna helps us with the positivity though.  She's oblivious to everything going on and Is such a clown, always happy.  She's at such a hard age for dealing with all of this but we don't know what we would do without her constant comic relief!

I'm working on therapy for Sadie as we work through her frustration of wearing this bulky 7 pound external metal fixator attached to her bones going through her skin.  We are going to some Christmas plays, checking into music therapy and a few other ideas and connections I've been able to make with instruction from our pediatrician and the Paley community.

Also on the bright side, some of my best girlfriends, my Kirkbrides girls, and our parents have been helping us get back on our feet.  We were truly in crisis mode and anything anyone offered to help me with over the past week has been graciously appreciated like food, errands, laundry, cleaning, just sitting with Sadie to comfort her, playing with Sienna, sewing custom underwear, spending time with me at our house so I can do bath time and have someone to talk to, etc etc!!  My local BFF Allison told me less than 24 hours after we got home she is coming over whether she's invited or not all day to help me and I DO NOT KNOW what I would have done that day without her support right by our sides.  We even have a singing telegram coming tomorrow night from Elsa courtesy of Allison in CA!!  Also, Sadie's BFF Vera (daughter of my BFF Jenny of course) came for a play date in Sunday and Sadie couldn't have been happier!!!  Sadie loves visitors!!  I am so thankful for our amazing people! Things are not normal but at least getting to the point of being manageable.  It's truly a new life for us.  Our cat Snoopy has been keeping a close eye on Sadie too and always sleeps with her.  I also think I have found a partial childcare solution because unless anyone forgot, I still actually have a job and business to tend to as well, in the midst of all of this insanity!!!  Jimmy also obviously is still working regular weeks (and is quite happy for his "break time" out of the house at this point, lol!!).  Over the past few days I've gotten to the point of laughing at everything - might be a sign of healing, might be a sign of insanity, not sure.  I do know I would not want to be handling this situation with anyone in the world besides Jimmy though!  That's a whole other post!

It's in my plans at some point to write a detailed post about the actual day of the surgery, and our entire Florida stay in general.  We couldn't script the trip more dramatic if we tried; you truly won't believe some of these stories.  Stay tuned and please keep praying for Sadie!  Thank you for your support!!

Before X-ray on left/after X-ray on right:

 

Recovery

Sadie's doing great considering all that she's been through!  We are in the hospital recovering.

She's been doing ok, pretty good some times and others just on a lot of meds, irritable, tired.  I was able to take her for a walk around the hospital in a wheelchair today so that was nice to get out.  As soon as we sat outside in the 80 degree weather she fell asleep.  

Our moms/"grandmas" have been at the condo with Sienna, Jimmy has been the chief chauffeur/food delivery person and I've been at the hospital since Wednesday.  Think we will leave sat or sun.

Waiting to see Dr. Paley today.  We have wonderful nurses here though and we are making slow but steady progress toward recovery.  We hear she will be able to bear weight on her leg with a walker shortly and can ride in the stroller!  

Also big news is that Sienna got to visit today!  She's a big clown and Sadie was super excited to see her but by the time she got here Sadie was pretty irritable.  Sadie did say to me (before Sisi got here): mama I miss sienna.  I hope she's ok!  

Also last night I told Sadie I was going to the bathroom really quick and Sadie asked me if I needed any help.  So sweet:). Then she told me I was her best friend.  It may have been the meds talking but I'll take it!!!

We did it!!!

Ill write a longer more detailed post later, but we did it!!!

Superhip 2 complete.

Dr. Paley said it "went beautifully".

We spent the night in PICU because of the complexity of the surgery but Sadie is truly in good spirits.  I slept in the bed with her with lots of cuddle requests.  I am not a medical person and could never be a nurse but it's amazing what you can do when it's your own child.

She's a soldier, a survivor, she has a new hip, and today is a new day and we can only recover from here.

She has a fixator on her hip that she will wear for 3 months, then we will come back down for a minor surgery to remove it.  She has an epidural right now and will keep it through tomorrow we think.  Moving to a regular room today.

Have you comprehended yet that this amazing superhuman doctor created this surgery, is the only person in the world to do it, and has now CORRECTED her hip that was not formed correctly at birth????  If that doesn't blow your mind....

Anyway more updates to come.

Go Sadie go!!!

I hope we can never go through a day as rough as yesterday again.

Thank you for all the love and support!!

Signs and Sea Turtles

We are here in WPB and just gettingn closer to the surgery date!  

We were at dr. Paleys office all morning/hospital for preop yesterday.  It went well.  Dr paley looked at her MRI again and apparently can now do a modified version of the superhip procedure that is more similar to superhip 1 than superhip 2.  That means less difficult.  He has a way, based on how her hip is formed, to join the femoral head and the cartilage that is present and insert BMR to harden it.  Estimate is now 5-8 hours surgery.

I feel like we are getting signs that we are being taken care of and guided.

Yesterday out of the blue Sadie said to me and Nana: I love you with God.  (We have never said that exact phrase to her)

On our way to the condo from the airport, we saw fireworks from the freeway.  On a Saturday night at 9:30pm, November 1.  I asked our driver if that was normal and he said he had no idea why there were fireworks, and it looked like it was coming from exactly where we were going!  We never did figure out where and why, but when we walked into the condo for the first time, (as if we had any doubt), there was a tablecloth on the table with fireworks on it!

The PA we met with at Paleys office was from Bangor, Maine, and that's the area my Grandma was born and raised.

We just went to the Loggerhead sea turtle exhibit.  They rescue sea turtles and nurse them back to health, then release them back to the ocean.  We even saw a turtle getting surgery at the hospital there!!!  It was a tranquil and relaxing time.  We even found a cold pressed juice bar on the way and all drank delicious juice on the way there!

I let Sadie wear whatever she wanted and she chose Cinderella, also with her hair up.

Just trying to focus on positivity, strength and prayers.