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.

Happy Halloween!

This week has been a whirlwind.  Packing for 3 high maintenance females is no joke, while trying to wrap up business matters at the same time.  We had a fun Halloween though and worked in both sets of costumes.  The marathon has started.  Can't believe it. #sadiestands

Impending Doom

8 days and counting until the surgery!  It's a very anxious feeling and Jimmy and I can barely sleep.  I spend my life being calm and controlling everything on major wedding days as a wedding planner, but the days leading up to and the day of the actual surgery are out of my control, which I am not sure how well I do with.  I think I will handle all of this much better once the surgery is actually over with and I have more control over things and Sadie is healing.

I'm trying to focus on the long term purpose of this surgery.  It will make her life so much better.  We are so lucky to have Dr. Paley.  He's a godsend doctor!  However, being a parent is an emotional roller coaster and my entire heart is so fragile right now waiting for this major operation.

I've been asking on my PFFD and Dr. Paley support Facebook groups what parents who have gone through this surgery recommend to help their child be comfortable after surgery.  By far the most popular answer was an ipad.  Then, today on facebook I see someone posted this article:
http://www.themirrorpost.com/2014/10/heres-why-steve-jobs-didnt-let-his-kids.html
(Why Steve Jobs didn't let his kids use an ipad) ---
Well isn't that a nice article to notified about right before I'm trying to be the best mom possible and bring anything I can think of to help her recover and keep her happy.  I'm going to ignore it and use the ipad anyway in the hospital while we are there for 3 days while Sadie has her epidural and basically can't move.

Poor Sienna has to have fillings in her front 2 teeth this afternoon!  As if things weren't crazy enough.  I am going to be a mess sitting in that room watching her cry while they have her strapped in doing the procedure.

On top of all of that, I am having recurring dreams of my best friend Bernie, who had a major stroke on Sept. 10 and has been in the hospital/nursing home ever since.  I am going to visit him one more time tomorrow before I leave just to hold his hand and talk to him even though he can't really talk back to me yet.  All of my dreams about him are that he is all better, back to normal, and we talk about how sick he was but that he's better now.  I hope these dreams come true!  I miss him so much.  I know how much he cares about Sadie and Sienna, and mostly me - and let's be honest, who doesn't feel good having someone who cares about them unconditionally the way my friendship with Bernie was/is?!

Halloween is this Friday so I'll post pics of the girls adorable costumes!

2 weeks to go!

Today is the girls last day at daycare!  I can't believe it!  I was feeling bad about the fact that I drop them off at the morning and don't see them until late at night because of evening meetings, but then I remembered that I am going to be with them non-stop for the foreseeable future and felt better.

I sent out letters to our friends and family that our friend, the amazing designer, Maria made for Sadie complete with fancy printed addressed envelopes too!  I have bought tons of antibacterial hand sanitizer, disinfectant spray, antibac wipes, airplane seat covers and toilet seat covers for our trip down to Florida.  Sadie cannot get sick, so I'm going to quarantine the girls until we leave.

It's been a long time!

It's been so long since I posted and the reason for that is because we really haven't had many updates in Sadie's medical situation.  We've been enjoying life with very little happening in regards to her legs and hip.  It's been really nice!

Sadie is a big sister!!!!  Sienna Reese was born on 7/14/13 at 11:52pm and is a beautiful, happy, angel baby.  We love her so much and she is the perfect addition to our family!

We are going to Disneyworld!  Sadie loves all things Disney so we decided to go so she can experience the "magic" before her hip surgery.
 

Sadie will be having “Superhip 2” surgery this fall by Dr. Paley in West Palm Beach, Florida.  The purpose of this surgery is to reconstruct her hip in order to prevent future issues as she grows as well as stabilize it so she can have limb lengthening done in the future (about 1.5 years after this surgery). 

More regular updates to come!  Pictures from Disneyworld,  surgery updates, etc.  If you want to get frequent updates on all things Sadie, follow vnicolek1 on Instagram!