Showing posts with label hip surgery. Show all posts
Showing posts with label hip surgery. Show all posts

Monday, April 7, 2014

Our Dr. Segal

Hi friends,

This post is one that I didn't think I would have to write.  One that I was hoping never to write.
Our beloved Dr. Lee Segal, Lucy's ortho surgeon, has left Phoenix Children's Hospital.  He is headed to the University of Wisconsin in Madison.
My first response was NO!!!!!!!!!!!!  No way could this happen!  Then, I calmed down a little, and began to realize that God sent Dr. Segal to us when we needed him most.  Dr. Segal was Lucy's angel.  I have no doubt! 

For those who don't remember, let me tell you how we found him.
We had our first meeting with an ortho at PCH. (Not Dr. S) He seemed like a great doctor, but wasn't a great match for us.  I was determined to get a 2nd, 3rd, 4th opinion, whatever it took.  I went home, did some research online, and saw Dr. Segal's picture and bio.  With the 'Director of Orthopedics' title, who wouldn't want him?!  I mean, that must mean he's the best, right?!  So I called.  My heart sank when the receptionist said, 'he doesn't have any appointments until May.'  (It was January.)  Great… I was really hoping to see him.  
She did give me the name of another ortho, and said he could see me in the Mesa clinic location of PCH on an upcoming Wednesday.  
We anticipated this appointment, hoping and praying that this doctor would be the right one.  If this doctor wasn't going to work, we would be heading to California for some other opinions.  Heck- I would have flown to the ends of the earth to find the right surgeon.

We get to the PCH clinic, and upon check-in, the receptionist told us, 'that doctor isn't here today.  He doesn't work here on Wednesdays.'  For those of you who know me, you know that I would have not made a mistake on the appointment day and time.  I even had a voicemail reminder call!  I got teary eyed, and told my husband, 'let's just leave.  This isn't meant to be… we need to start checking out other hospitals and doctors…'  That may not sound reasonable to some, but to very confused and scared parents, overreaction is a daily occurrence.  
Sure enough, the receptionist came to us as we were headed out the door and said, 'Wait.  We have one ortho here today, and he is overbooked.  He just got here, so let me see if he could see you.'  She came back after a few minutes and said, 'yes.  Come on back, he will be right in.'

A few minutes later, the door opened, and it was Dr. Segal.  I recognized his photo from the profiles page on the hospital's website.  I said, 'you're the doctor I have wanted all along.'  He looked at me and said, 'why?!  Why would you want me?!'  and laughed.  I knew right then, this is our doctor.  He was so normal.
He spent close to an hour with us.  He explained things.  He did an exam on Lucy. He got down on Lucy's level and would play with her.  He treated her like a little girl, not just his first patient of the day. He comforted us.  He gave us a 'road map' of what we can expect in the future.  
We left the appointment with our beautiful 12 month old daughter, and I told Aaron, 'As much as I don't want to do this, this is the right doctor.'  He agreed.  It was a strange feeling we had leaving that appointment...strange in a good way.  Like a big, warm feeling of comfort is the only way I can explain it.  
  
Since that day, Dr. Segal has never disappointed us.  

Who knew that when we showed up for an appointment on the wrong day, that we would be so lucky to get him?!  
Prayer, my friends! Prayer.  We prayed and prayed and spent so many nights crying our eyes out, hoping that we would find some comfort in this awful diagnosis.  I remember saying, 'God, please. Just give us a sign.  Give us a sign that Lucy will be okay.'  Dr. Segal was our sign. 
Dr. Segal entered our lives with everything we could ask for, and more.  Expertise, love, kindness, understanding, professionalism… I could go on for days.  He walked this journey with us, as a member of our family, not just a doctor.  He gave my Lucy the opportunity to have a normal life.  
I will never forget when we were just about to send Lucy off with him for her first surgery… Feb. 16, 2012.  I was laying with her in the pre-op bed, and just holding her, and studying her little legs and tummy and thinking about how I am going to miss those things so much!  To say I was upset doesn't quite cover it.  I was a total wreck.  Dr. S said to us in his calm tone, 'Guys.  I will take care of her like she is my own.'  Can you imagine what that meant to us?  Confused, scared, anxious parents in a pre-surgery room with their little baby about to be put in a body cast. 
It meant the world.  It meant the world because we knew that he meant it.
He is our partner through this, not just our doctor.


Having him be Lucy's doctor is probably one of the best things that has happened to us.  Not only did we get the best doctor, we have a member of our family for life. (His beautiful wife, too!)  Truly, the kindest and most caring people I have ever met.

So, for those of you who are in the Wisconsin area and needing an ortho, don't hesitate. You will write me and thank me for the referral. :)
For those who are doctors and need to learn from someone, don't wait.  He will lead by example, and anyone who becomes half the doctor he is, consider yourself lucky.
For those who want the best, Dr. Segal is the one.  He WILL take care of your child like he/she is his own.  

Be sure to tell him, 'Lucy says hi.'

Where do we go now?  I don't know.  Honestly… our next appointment isn't until January 2014, so I have plenty of time to interview some recommended orthos and pray for someone as amazing as Dr. Segal.  (Although I don't think anyone will ever compare.) 
Would we travel to see him?  Absolutely.  It won't be November-March, but after that… heck yes.  Only the BEST for my baby!



(here he is with M & M on his cap. Long story, but Lucy's first pelvic osteotomy was actually cancelled due to her sneaking an M & M.  So at her 2nd appointment, he showed up in pre-op with this on.  We were cracking up.)


Thank-you God for leading us to our angel.  

"People pay the doctor for his trouble; for his kindness they still remain in his debt." - Seneca









Wednesday, January 29, 2014

Dear Dr. OZ...

I got the idea from a friend…
I couldn't wait to start!
What are we doing. you ask?

We are starting a petition to hopefully get the attention of the national media!

THE DOCTORS show and DR. OZ!

I have started a petition on change.org that is asking (begging, really) for these doctors to do a segment on DDH.
The numbers of infants born with hip instability is astounding.  1 in 1000!
So why isn't there more awareness and info out there?  Good question… BUT… we are standing up and going to do something!  Being in the DDH world for the last 2 years, I have heard some pretty scary stuff… I have also seen some amazing things.  It's time to stand up and do this…

As you know, I have been asked to be the parent/child advocate for One Hip World.
I am so thrilled to be a small part of something SO big and so great.  I am truly honored.

So Dr. Oz…. if you are reading. WE NEED YOU.  WE NEED YOUR HELP.
Pediatricians are missing hip dysplasia left and right.
Parents are confused on what to do.  Parents are scared out of their minds.
There is very little info out there.
Our children are suffering and us parents are overwhelmed.

My daughter, Lucy, had surgery and a body cast at 13 months.  She was in her body cast for 4 months, totally immobile.  After that, she was in a brace for 6 months!
Recently, in May of 2013, she had a pelvic osteotomy.  Wheelchair for 6 more weeks.

When DDH is picked up via ultrasound at birth-6 weeks, a pavlik harness can be used, therefore possibly not needing any surgery… We can only wonder 'what could have been…'  Maybe our lives wouldn't have been surgeries, casts, tears, and heartache… Maybe… just maybe, by doing a show on DDH, we can help prevent this from happening to more children.

Parents like us have started online support groups via Facebook, and One Hip World.
We need more.
We need national attention to DDH.

Please help us!


Love,

Karen
onehipworldkaren@gmail.com

Lucy's mom

:)

LINK to our petition:
(Please sign and share!!!)
DDH PETITION FOR DR. OZ and THE DOCTORS




Monday, May 6, 2013

Entertainment Extraordinaire

Well- 1 week away from surgery day.  YIKES!
Yes, I am freaking out, but trying to keep it together so I can take care of these 2 beauties of mine.

This surgery is our 2nd round of hip surgeries... I remember her first surgery like it was yesterday... I remember how badly I wanted to get her out of the hospital.  I remember her waking up for about a week with muscle spasms... jumping up screaming in the night.  I remember the look on her face when she woke up and was stuck in a cast.  She looked at me with fear in her eyes... total panic, and screamed and screamed until she threw up.  It was awful.

Am I expecting this again?  Yep.

The point to this is that I feel a little better knowing what to expect.  I know the first 10 days is going to be difficult aka a living hell.  I know I will wonder every day how we are going to make it through.  I know before bed every night I will cry and cry, and pray to God that her hip is healing... I know all this because I have been there before.

Today on the way home from her gym class, I caught myself looking in my rear view mirror at each stop light.  I tilted it down so I could see her perfect little face... smiling once in awhile and giggling when Dora did something funny.  (Yes, we have a tv in the car!)  She caught me looking at her and got the biggest smile on her face, and said, 'MOMMY! LOVE YOU!'  I just thought, how in the world am I going to do this?  How am I going to feel when that smile is taken off her face, and she wakes up with the look of pain and fear?  I am terrified.  Terrified of that first dreaded 10 days.

I am really trying to focus, and get prepared.  I didn't quite know how to prepare last time, and actually this time- I don't either!  We don't know if she going to have a cast, or an abduction pillow.  'Pillow' sounds like a half way decent option, until you see that its a huge, thick piece of foam strapped to her legs to keep her immobile.  Honestly, both options suck in my opinion, but at least with this pillow thing (and I use the term pillow very loosely) she can sit up on her bottom and play.  She won't have to be propped up with blankets and pillows.  AND- it's not hot for her.  I also have to admit, I am (unfortunately) a spica cast pro.  I can waterproof a cast and maneuver it around like nobody's business... 16 weeks of that will do that to ya... :)

I had a few hours alone yesterday, and decided to hit up our local craft store, Hobby Lobby, to find things for Lucy and I to do together while she is immobile.  Most of these were super cheap!  (Don't let the price tags on them fool you, they were 30-50% off that price.)  It's going to be a whole new ballgame entertaining a child that can communicate and has her own ideas... and knows what she is missing by not walking.  I am hiding all of these toys/crafts and going to bring 1 or 2 out each day to keep us busy.

OH WAIT!  I forgot to post this, but Dr. Segal told us that it may not be 6 weeks.  It could be FOUR!  SAY WHAT!?!?  We will re-evaluate after 4 weeks and pray that we get that lucky.  Four weeks is 28 days!  3 of them will be in the hospital... the following 7 will be hell so those don't count when you first get home... then the last week is the countdown... SO- really 2 weeks that we need to worry about.  (Yes, I am getting my hopes up, and I am CLAIMING this for Lucy.)  FOUR WEEKS FOUR WEEKS!  If it's 6, it's 6, but I feel like God is going to cut us some slack here, since we did a 2 week 'for fun' cast time the first time.  (Her hip re dislocated in the cast after surgery and we did close to 2 weeks for nothing!)  This is hopefully my good juju coming back... :)

Here are pics of what we have so far... There are more things coming also.  Total for all the crafts and supplies (including scooter board) were about $150... not too bad.  Sanity has no price tag. :-)
Hope some of these ideas help!

This is amazing. It should be here Thursday. I ordered it from Flaghouse. It's an extra long scooter board that she can lay on her tummy and zip around. (hopefully) My friend and fellow mom of 2 girls, Lindsay at Two Bobbins Later, is going to make a padded vinyl covering that's wipeable for it.  She's also going to make 2 pillowcases that velcro on.  She's uber talented, so this is going to look amazing.  AND- I am going to donate it to someone after we are done.  I have a weird thing with keeping anything that reminds me of this.  I got rid of all of Lucy's clothes that she wore during her cast last year.  Every single thing that reminded me of it... (sigh)



A lap tray.  This will work with a cast or pillow.  Perfect for a snack or a game...


A must!  PAINT!  We love to paint, so this will be something Lucy will enjoy...


We are going to make her and Lily matching shirts!  We got iron on transfers, and fabric markers and we are going to go to town!  I will let her decorate them however she chooses... Lucy will LOVE to see sister wearing something she has made...


Lucy is a HAT and SUNGLASSES freak!  We rarely go anywhere without her having to grab a hat... so we will decorate these with glitter and stickers...


Pom Poms and Feathers for sensory bins... I am going to do rice and beans also


These were kinda cute... Masks on a stick... Her cousins that will visit will have fun making these with her


Since Lucy is into accessories (LOL) she can decorate her very own purse. There are 3 in the pack


Stamps and ink pads... as long as she doesn't stamp her sister, we will be ok


So cute. We are going to do these for Grandmas for Mother's Day also!
We bought glitter to put inside the water.
ONLY .87 cents!


Re-usable coloring pages that turn colors when you add water. Pretty neat.


She will love this! Super good for fine motor skills also.


This was cheap, so we got it!  Looks fun...


This seemed to be a must... IF she isn't sleeping in bed with me, that is... 


Lucy LOVES LOVES LOVES the Nick Jr show, BUBBLE GUPPIES.   So, these will be her friends to sleep with for awhile to make her smile


Thomas the train re-usable ice pack.  She has no clue who Thomas the train is... She thinks its Chugginton, her other fave show, so I didn't tell her any different.  She touches it and says, 'I cold!'


Gift box from Grandma!  Pumbaa (from the Lion King) stuffed toy, Chuggington carry case and trains, Beauty and the beast figurines, matching games, puzzles...


Nick Jr's website has TONS of free printables!  This is for when she is DONE! YAY!
Also, there are TONS of free games, tv episodes and cool stuff!  It's a super website...


Another FREE printable. Matching game of Yo Gabba Gabba


FREE printable crown


FREE printable coloring pages


Free printable


Just a little quote that gets me through the day...


New Ipad cover.  It actually has a stand so we don't have to prop it up... She officially has her own play list of music too! (Don't judge)  :-)  We bought her headphones too, but those aren't here yet.


PERFECTION.


These two are the reason for living!
Thank you God for them and my wonderful family.  Couldn't make it without them. :)