Tuesday, July 31, 2012

First day of physical therapy

Today was the babe's first day of PT.
I am really happy with how it went!  Her therapist's name is Ms. Hilary.  She was very, very nice, and knew not to get too close just yet... (Lucy is skeptical of new people!)  
The place we go to is called Horizon Pediatric Therapy in Mesa, AZ.  It's a home that has been turned into a PT place.  What's nice about that is it doesn't have that sterile, cold feeling like a doctor's office does.  
Hilary was actually very pleased with Lucy as she is!  She said that her range of motion in her leg is really good, and her posture is near perfect!  What we are focusing on is for Lucy to re train herself to trust her leg and hip again.  Hilary said the muscle tightness would/could 'eventually' work itself out, maybe.  BUT, if you start PT right after a surgery, you will teach the baby to walk using the hip first, not their knee and leg.  She said it's a lot harder to correct a gait when a child is older.  It seems we are getting Lucy in at the perfect time.  Hilary also told us that she is impressed that Dr. Segal recommended PT, because most orthopedic doctors don't.  She feels that EVERY child who has been in a spica cast could benefit from PT.  So, if your child has been in a cast, or will be soon... push for PT!  What can it hurt?!  
I asked her how long she thinks it will take Lucy to re train herself and to walk... she said 'very soon!'  She is proud that Lucy has the desire, and tries to walk on her own already.  (She falls flat, but hey... she is trying!)  She said having the desire is half the battle.  
Lucy has only been out of her brace for 2 weeks.  We are so proud of how well she is doing!  I forgot how it feels to have her crawling on me. Smothering me.  Not stopping for a second.  I can't complain ONE bit about it, because I remember her in her cast just sitting there.  I will take EVERY single thing I can, as long as she is moving and happy!  (Please remind me of this when she is running in a million directions and I am carrying a newborn and chasing her at the same time.)
Anyway, I wanted to share some of the things the PT suggested we do.  They aren't 'huge' big things, but I can absolutely see how this will help her.  I will explain as we go...
Remember, these were meant for Lucy at her stage, so don't take this as generic for all babies her age after surgery. Ask your doctor before starting anything! :-)

Sorry it's on it's side, no clue how to fix it. :)
Anywho... have the child on your lap and have them stand on their own to play with magnets on the fridge. This will strengthen the LEG muscles. Don't let them push backwards first.  Always have them shift the weight forward.

I thought this would be cool.  You can use a child sized swimming pool and fill it with balls, toys...whatever. Have them crawl in and out of it.

Kicking. It seems like L will mostly kick with her 'good leg' aka the right one.  We need to work more on her kicking with the left.

This is to stabilize the hips to get them in shape for walking. 
L tends to turn her foot outward, so the PT said to keep forcing it straight. 
(I think this is all I am going to be doing for the next month. Putting her foot straight.)
She said the repetition of doing this, it will train her to put it straight.

Our PT room :-)  Daddy came too!

I have noticed L will usually only re shift weight to her right side, not her left.  This will force her to use that hip!

She said to use a stool and have them practice getting up and down

This was another thing we were supposed to do! (Notice her left foot turning out.  Drives me crazy and I have to keep correcting it.)  Balancing on one leg... 

Pool... instead of just letting her free kick, sway them horizontally.  Let the water flow do it's thing!  It will help loosen the muscles.

Weird picture, huh?!  No clue why the kid is wearing a weird hat, but anyways... 
This is pretty self explanatory...

YAY I am awesome at this!

This is what is going to keep me busy.  I will upload a video of Lucy's crawl.  She goes FAST, but has her left leg extended out straight.  It's like a scoot more than a crawl.  I am supposed to follow behind her, put her legs in line, and give resistance.  Great.  I can see knee pads in my future!

Would you know she had a cast on 8 weeks ago?!  Seriously?  I have a future ROCKETTE on my hands...

This was another big one.  Again, the weight shift.  L doesn't do this yet... we need to work on this one...
She also said don't let her sit in the 'W' position, which is where both legs are almost tucked behind them.  It makes it WAY too easy to not use the hips.  

Lunch after!  YAH!

This one sounds fun.  She said if they are crawling up hill, or over pillows, they can't scoot.  They will be forced to use their hip.
Her Gymboree class has inclined mats, so those are going to be great! 

So all in all, it went really well.
We have tons of new things to do with her... 
I am also glad that she feels Lucy will be able to walk really well and really soon!  YAH!

Over and out from SUNNY Arizona... home of the 110 degree daily weather...

Monday, July 23, 2012

Spread the Love. Donate.

Hello again friends...
Today's post is going to be about giving back.
Giving back to the 'hip' community of parents.
I have decided to start an online fundraiser.  This is how it will work.
I am donating a $250 Visa Gift card to the winner of the raffle drawing.
How do you get entered in the raffle??  Well, for each $25 donation, you will be entered in the drawing one time.  For a $50 donation, 2 times... etc...
The money I am going to raise is going to go a few places.
As many of you know, we bought Lucy a special table to accommodate her cast.  It was made by
Ivy Rose Spica Chairs.  Stephanie, the owner and creator of the company has 2 beautiful girls that were born with hip dysplasia.  She started making these chairs knowing how much her girls enjoyed them while they were casted.  Honestly, Lucy lived in this chair!  She played, ate and was able to sit up so she felt like a big kid.  I want to donate at least 2 of these chairs to families in need.
The rest of the monies raised will go to One Hip World, which is supporting the research and advancement of the International Hip Dysplasia Institute.
It breaks my heart and infuriates me at the same time that there have been almost NO advances in treating Hip Dysplasia in almost 40 years!  Yet, 1 in every 1000 first born female has some form of DDH. (Developmental Dysplasia of the hip.)
I remember walking into a store with Lucy a few months ago, and a lady ran over to me and said, 'hip cast, huh?!'  I said, 'how do you know?!'  (Most people have no idea, and think it's a broken leg.)  She told me her daughter was in the same cast 30 years ago.  She also went on to tell me how mad that makes her that there isn't better options for kids.  With all the medical advances, they are still put in a body cast??  Really??
So, my goal is set at $1500 to raise.  I want to be realistic, but I would also LOVE to fly right past that number and raise even more.  I hope and pray in 20 plus years that my little Lucy's babies don't have DDH.  Yes, it's a possibility.  God forbid, if they do, I want to be able to tell her that mommy did her part in helping raise $$ and awareness.
SO many pediatricians, (including Lucy's FORMER one) totally had NO clue how to check hips.  I pointed out that 'the hospital pediatrician said that there is a click in her left hip.'  Our pediatrician said, 'oh no, her hips are fine!'  So basically, we are where we are due to her lack of knowledge and care.  Makes me SICK.  This happens EVERY day.  Children are walking around with major hip issues, and the older they get, the harder the treatment gets.
With our new baby on the way, you better believe that we will be doing an ultrasound and x-ray.  I don't care what the pediatrician says, I am going to do it on my own!  No messing around this time.

So, with that said, PLEASE consider making a $25 donation.  It will be put to great use, and as you know, I am the FIRST to donate and help others when they need it.
This time, I need it.  Lucy needs it.  Babies/kids with DDH all over need it.
Thanks for your help. :-)

I can't wait to do a post on the families that receive these chairs!!! YAH!

Here is a video of our story thus far:


Wednesday, July 18, 2012

6 week check up

Holy COW.  I can't even believe I am still awake to write this post!  My nerves and adrenaline (and diet coke) are working overtime!
Today was our 6 week post cast removal check up.  A big, huge day.  
As you know, Lucy has been in the brace full time for the last 6 weeks.  She gets about 15 minutes out of it a day to have a bath... that's it.  She has learned to move around, stand and even do a headstand in it!  Crazy!  
We show up for our 9:15 appointment, thinking 'hey! We are the second appt of the day... we should be right on time.'  Not so.  We wait to get into the x ray room until 10:10!  Are you kidding me?!  Lucy was getting bored, and heck... so was I.  Finally they call us back for x-rays, and Aaron takes her in, since I am preggo and can't... I hear my baby screaming down the hall, and I just lose it.  I cried like a baby too... In the middle of my sobbing, I closed my eyes and said, 'Dear God, please.... please please please have this x-ray be good.'  The same prayer I have prayed every night before bed, every morning when I wake up... 'Please keep your hand on my baby's hip.'  My biggest fear is that the bone has moved again, or that there has been damage to the blood supply of the bone. (AVN they call it.)  I couldn't fall asleep last night, and when I did, it was only for about an hour... I had horrible thoughts/nightmares of Lucy not being able to walk, and her never being able to stand... HORRIBLE. 
I try not to think such awful things, but again, I am not as trusting of things as most people.  With having our setback with the hip re-dislocating in the cast after 2 weeks, my trust is gone.  
Anyway- on to the good news...
So we get into the room, and Dr. Segal is in minutes later. He says hello and looks at me and says, 'how are you doing?'  Like a freaking loon, I lose it.  Crying like he stabbed me.  I said, 'I am so worried and nervous that something is wrong.'  He seriously just stands there staring at me.  My husband looks at him as if to say, 'you should try living with her!'  haha... It was the weirdest awkward silence in the room as he stood there, wide eyed, watching my meltdown.  After the shock wore off, he puts his hand on my shoulder and says, 'her x-ray looks great.'  WHAT!?!?!?!?!?  Is he serious???? 
He puts Lucy on the exam table and puts her knees together and manipulates the hip.  Her left leg (the one that was dislocated) seems a tad longer now and he explained why.  Her muscles are super tight around the hip area, which is to be expected.  Once they 'loosen up' the length discrepancy should even out.  He suggested we begin physical therapy to help with that.  He said it's normal for kids that have been casted.  WHEW again.  
Lucy let Dr. Segal carry her to his computer and he showed her the x-rays.  All the way there he said, 'I will carry you, Lucy, because your mom is... well.... your mom is different, and she is freaking out.'  LMAO!  Haha!  
Her left femur is still smaller than the right (to be expected) and the socket looks better formed (to me). Dr. S says it's too early to tell anything yet, but if the socket doesn't grow, expect a future surgery around 3.  :-(  Let's just keep praying for growth.  
We get back into the room and Dr. S says to me, 'Karen, I need a favor from you.'  I am thinking, 'holy cow, don't ask too much of me right now, I am one step away from a freak out.'  "SURE" I said.  He said he has another patient diagnosed with a dislocated hip, and he wants to know if he can give my information to this family for help/support.  What an honor.  I told him I would be thrilled to help another family out.  I know how horrible this is, and the fear of the unknown... I am so glad he thought of me to help.  
He then told us to continue with the brace, but ONLY for night time sleeping.  WOOHOO!  That is so awesome, since my beautiful girl and our family are headed to LA JOLLA, CALIFORNIA for 2 weeks soon!  My dream is about to come true.  To see my beautiful nugget on the sand playing... no cast, no brace... just pure happiness.  
Let me tell you... If you are reading this and just about to start a journey with hip issues, don't be afraid to be pushy!  Get x-rays when you feel you should.  Ask questions.  E-mail the doctor.  If a pediatrician tells you 'the hips are fine' and you feel otherwise, demand x-rays.  There are WAY too many hip dysplasia cases out there being MISSED by pediatricians.  My next post is going to be about doing a hip check yourself.  May sound crazy, but I have seen it done enough times now, and I do it every day to Lucy!  (CRRRAZY I know...)  Just go with it.. :)

Well, the babe is off to nap, and I am off to watch Teen Mom and eat french fries.  (HA!)  

We go back in 3 months for another check.  Will keep you posted on the PT.

Lucy was so excited from her good news that she threw her lunch all over the floor

This is what her and daddy do (when she was in her brace!)

DYING!!!  I am SO excited to put her in normal clothes and shorts!  We got this at Gymboree the other day.  She's gonna be adorable in this...

Mom is a total sucker at the Disney store