Wednesday, June 27, 2012

3 weeks post cast

Well, here we are 3 weeks after the spica cast was removed... Hopefully we are half way through wearing this annoying brace full time!  We see Dr. Segal again in 3 weeks from today.  I plan on telling him that we are going to the beach for 2 weeks so if he thinks this brace will be on Lucy full time in August, he has another guess coming.  :-)  The reason I say that is because from what I have read, there is no medical backing on whether this brace works or not.  It's a 'wait and see' type of thing that CAN encourage socket growth.  (What we are waiting for.)  Of course, we have followed the Dr.'s orders to a T, but I am SO ready to see her crawl normally and learn to walk!  
Life isn't totally back to normal.  She still has to be carried a lot, and being pregnant in 115 degree heat, it's been interesting.  But... we are making it!  
One huge benefit is now she can sit up on her own.  We can sit in her play room and she can have some freedom.  Before we were always having to prop her up on bean bags or pillows.  
I can tell she is SO much happier.  Not that she wasn't happy before, but man... she is SO happy to be free!  She laughs, claps and dances almost all day long. (Did I mention she is the best?!  The sweetest?!)  Haha, anyways... 
We have gone back to her weekly Gymboree classes now.  It still is sad to watch all of the other kids her age running around while she is sitting there.  All I keep reminding myself is 'this is all part of it.  She has to heal and gain strength."  
Lucy has been LOVING the pool!  All of our family members have pools, so we are usually swimming 3-4 days out of the week.  I let her have 'brace free time' and she kicks her little legs in delight.  
I have also found the BEST highchair.  This chair would work for babies in spica casts, braces or babies who are in neither!  It's awesome.  I wish I would have known about this months ago.  Yes, it's not cheap, but it has a removable tray that allows the chair to pull up to the table.  It also has adjustable heights, so the chair will grow with her.  An adult can fit in it!  It's called a Keekaroo.  Get one!  Don't wait.  It's awesome.
Another tiny complaint about this brace is that she is still stuck in clothes that I hate.  (haha!)  Because the brace is foam and rivets, I don't want it rubbing her skin.  I have been putting her in a  onesie and then a light pajama pant or yoga pant over the top of that.  I wish she could just go with a onesie, but that darn foam... It's sweaty and it gives her a rash. (Me too I might add!)  
I found a way to clean the brace also.  It was turning a lovely shade of grey, and had a few strawberries smashed in the velcro.  (GROSS)  I ran a sink full of soapy water and added some bleach.  I soaked it for an hour or so, and VOILA.  Bright white and good as new.  My question is WHY WHY WHY would you make an all white brace?  Can't they pretty it up a bit with pink or purple?!  

So all in all, things are going great.  I am so happy she is out of that cast... I hope to NEVER see one again.  
We are slowly returning to 'normal' around here and getting very excited for our vacation to La Jolla, California.  Lucy's first time at the beach. 
Here are a few pics of our last few weeks...

At Gymboree class!  She loves the slide and the rocking horses

Riding on her car

Seriously. How cute is she when she sleeps???

The awesome new high chair!  I called my husband and started the conversation with: 'Ok, don't be mad when you get your credit card bill, ok?"

At the youth museum. She is dressed all weird since for this area you had to have socks on.  Well, I found one random sock in my car and one mitten.  HAHA!  So she is wearing one sock and one mitten.  She still rocks it though. :-)

Enjoying her brace free time.  She could never bend her left leg like this before surgery

Funny faces with daddy at lunch!  These are my 2 favorite people EVER!

Saturday, June 9, 2012

Case of the brace

Well, I promised myself to never complain about the brace, since ANYTHING is better than a spica cast!
Here I am, about to complain. (Just a little!)  Not about the fact that she has to wear it, but the fact that she hasn't even worn it 5 days straight and it's falling apart.  (And we alternate between TWO of them!)
We have already had to take it back to Hanger to have one of the rivets fixed.  We went to pull the velcro and it flew across the room!
The dang velcro edges are splitting and peeling already.  No clue how this is going to last!  All I do know is that our insurance will be coughing up another $200 brace if this one falls apart.
Like I said before, I swear I could make this from items at a craft store.  It's foam, a tad bit of plastic and velcro.  Not very in depth.

Lucy has to wear the Wheaton Brace pretty much full time until her next check up in 6 weeks.  It's really not that bad.  She can sit up in it, swim in it, and it doesn't seem to bother her.  I take it off to change her diaper and clothes, and for baths... (We haven't really done very many baths since we have been swimming every single day!)  I take her nude with just the brace on in the pool!  Our dr. said it is fine to do that, since it doesn't compromise the shape of the brace.

The best part is she can sleep on her tummy.  She is in heaven!  She is super light now and super squishy. :-)  I still have yet to pick her up from under her arm pits (you aren't supposed to when they are casted) and I probably never will.  I always pick her up with one hand under the brace.
I was thinking with baby #2, I don't think I could grab both ankles and lift him/her up to change the diaper.  It's set in me not to do that!  I will probably do what I do now, lift up by the bum and slide the diaper under... It's crazy what you get used to.
 On that same topic, when I see parents that hang their kid upside down (playing of course!) by their ankles, or lift them up just by their arms, I want to die!  YIKES!  That's an orthopedic nightmare waiting to happen... 

Anyways, wanted to share our lovely brace with you.  I finally got some good pics... 

Baby girl sitting up on her own the day after cast removal

Loving on Grandma!  

Dang velcro piece of crap!

At least she fits in her stroller again without using pillows!
We have the baby jogger city select

The stupid rivet that popped off and we had to fix

OH, and did I mention I am allergic to it, also?? Every time I pick her up my arms get a red rash that burns.  Lovely.

So cute. 

Here it is... She was being a shy baby

YAY for tummy sleeping!

Loving on daddy! This was taken at our new rental house inspection yesterday!
Lots of work ahead!

Thursday, June 7, 2012

First full day without the cast!

What a GREAT day we had!
I forgot how AWESOME it is to see Lucy's legs.  I forgot what 'normal' feels like!  Not that we are totally back to normal... far from, but WOW.  This feels so good!
Last night was a bit rough.  We slept Lucy in her crib (as always) on her back.  She got so used to back sleeping since in her cast, there wasn't another option.  I thought to keep things 'normal' for her, we would lay her on her pillow in the crib, then prop her feet up with pillows.  WRONG. 
It took her 2 hours to settle down since now that she CAN move, she WANTS to move!  She was kicking her legs, throwing her blanket and having a full on party in her crib!  She finally fell asleep around 10, thank goodness.  Aaron and I were SO tired.
Fast forward, 3:30 am, full on screaming wake up.  We both ran in and got her.  She just wanted to be held.  She had scooted her way off the pillow and was at the bottom of the crib.  
I thought, forget this nonsense.  I took her in the bed with me, gave her a bottle, and layed her on her tummy.  Within seconds, she was OUT.  Now, for those of you who have slept with a baby before, you know how this story goes.  I was ALL the way on the corner of the bed, Lucy was right in the middle.  I honestly didn't even care how tired I was... I was just SO happy to be able to reach over and feel her back!  :-)  
My husband finally came in the room at 9 am!  We were both still asleep.  Lucy just woke up quietly and layed there.  I rubbed her head and played with her hair, and she just spooned with momma for another half hour or so. :)  xx HAPPY xx
We got up, and headed of to the Hanger store where the brace was ordered for us.  We get there, and lucky for them, it's ready.  She needed a size large!  She is no small fry.  Lucy is 30 lbs, and has always been in the 90th percentile!  That's right.  Big ol' babe of love. :-)
We turned in the size small brace, and went on our way.  We did get 2 braces, since they are such hunks of crap that I just know one will break...
Anyway... We went for lunch at Aaron's favorite place.  The Mongolian Grill.  I really don't like it since it's asian style food (not my thing), but him and L love it.  Lucy ate like an adult!  Shoveling noodles and soup in her mouth, and has discovered the art of dipping.  She was dipping wonton chips in sweet and sour sauce.  It was EVERYWHERE.  It even got on her bright white brace!  Did I care?!  Nope.  Make a mess baby girl.  Go for it.  She hasn't gotten to do that in awhile.  (And I didn't have to clean up!)
We then come back home for a nap, and then head out to Grandma's house to go.......
HECK YES.  She wore nothin' but her brace!  I am not going to screw around with swim diapers, then the brace, blah blah blah.  We held her and she was having the time of her life.  Took everything in my power not to break down and cry.  I was so happy to see her happy.  It's so weird, I just can't believe that there are activities like this that we can participate in.  We are so used to going 'oh we can't do that because of her cast...' and now it's like, HELL YES!  Count me in! 
OH, and the chlorine from the pool got rid of the sweet and sour sauce stain on her brace... :-P
Lucy already has tried to sit up, and doesn't seem to be sore at all.  She is doing amazing.  I haven't had to give her tylenol or anything.  She actually laughs when we change her diaper, since it probably tickles her skin!  Her skin already looks better.  
We have gotten a few pair of loose pajama type bottoms and cut up the seam of the bum... That way they go on super easy and are able to spread out to accommodate her brace.  They are loose ones, and cotton... super soft.
Again, (I can't say it enough), I am so lucky to have gotten the most amazing baby in the world.  (I know, I know, you think every mother says that.)  Not true.  I DID!  I really did!  :-)
It's hard to go back to complete 'normal' life since she isn't mobile yet, but I have a feeling it won't take long.  We are just going to go at her pace.  If it takes her months to become mobile, so be it.  We just want to love her and make her happy.  My goal in life! 

Here are a few pictures of our first day without a cast.  Hope they bring a smile to your face. :)

Goodnight from the hottest city in America... 

Doesn't this picture say it all?!  Pure happiness.  I love her so much!

ALWAYS kisses for mommy

Playing the iPad with Grandma last night.  She always picks the Bulldog.  (Her brothers are bulldogs!)
That's my girl!

Our sleep!


Waiting to get fitted for the new brace

Wednesday, June 6, 2012

Cast OFF!


Cast is off. 


Today was so stressful... Not to mention, I couldn't sleep a wink last night... I kept thinking, 'what if the hip is out of the socket again?!'  It was possible.  I have learned with hip issues, anything is possible, so it was hard to relax and rest...
We headed for Phoenix Children's today around 10:30 for our 11 am appointment.  Dr. Segal, of course, double booked, running late, etc... always fun with a baby who hasn't napped yet...
FINALLY Karla, his nurse called our name... THE BIG MOMENT!  We went into the cast room and she started cutting it off.  It took about 10 mins.  Lucy was uneasy because of the noise, and whining, but not crying at all.  I expected her to be screaming!  She was very busy listening to me singing 'our song.'  "In the jungle the mighty jungle, the lion sleeps tonight....."
The amount of cotton that was under that cast, holy cow.  Plaster, cotton, fiberglass, you name it.  All in one spica cast package... She got the top part off first, and BAM!  There was that tummy that I have waited 3 months to see!  Then BAM!  Legs!  WHOA!!!  I have missed those sweet little chubby legs SO much!  I was SO happy and Lucy looked at me like, 'where is the rest of me!?'
The nurse told us we needed to go to the x-ray room, and I looked at her like, 'ok, how are we getting there.'  I was scared to death to hold Lucy.  She told me just to pick her up and put her on my hip without letting her legs go together.  OMGOSH.  I have never been so scared in my life!  
We made it over to the x-ray room, and being pregnant, I couldn't take her in, so daddy did.  I could hear her screaming bloody murder down the hall.
We are then directed to Dr. Segal's room, and wait... and wait.  I love him to death, but man.  He is a popular guy.  He doesn't rush, which is great, but the waiting with a baby is hard!
He comes in and has Lucy lay on the table and he rotates her hip in circular motions and my heart is racing!  I am thinking, 'please don't do that!!  You are gonna mess up her hip!'  DUH.  He is the Doctor right?!  The x-ray pops up on the screen and there it is.  Hip is IN!  They took the x-ray with her legs straight too, not in an abducted position.  Poor Goose.  That must have hurt!
He explains that it is 'unlikely' for her hip to re-dislocate at this point.  It is very stable.  Now what we are doing is watching her AI (Acetabular Index) aka the socket growth.  The numbers have to keep going down.  Right now her good hip (right) is at a 19, and her bad hip (left) is at a 33.  He said we just wait and hope the number goes down.  If not, around 3 she will need a pelvic osteotomy. :-(  I sure hope not, but all we can do is pray!
So we knew L was going to have to wear a foam brace for awhile.  We thought it would be there in the room waiting for us.  WRONG.  We were told by Dr. Segal that there are several of these 'locations' and he wants us to go there today and get fitted for a brace. WTF?!  Phoenix Childrens is one of the biggest hospitals in the country.  REALLY?  They couldn't have had a brace there?  I wasn't thrilled, but we went on our way.  We called the Gilbert one (on our way home) and of course, they didn't have any braces in stock. WTF?!  We call the Chandler one, (about 20 mins away.)  He 'thinks' they do.  OMG.  At this point, I am ready to go ape shit on someone.  L is starving, tired, but honestly being SO perfect!  She was happy just drinking her bottle and watching tv in the van.  (I told you she was perfect, right?!)  
We show up to the Chandler one.  Waiting again.  Finally the guy comes in and has this cheap little piece of foam and starts putting it on Lucy.  I swear, I could make this thing in about 10 minutes.  Foam with velcro straps.  He gets it on her and says, 'well, it's too small, so I am going to send you to the other clinic in Mesa.'  (another 1/2 hour away.)  Now the pyscho Karen that you have all grown to know and love comes out.  HELL NO am I going anywhere else.  We went round and round for about 10 mins and finally he told us just to keep her in the small one til tomorrow.  He told me I can pick up TWO braces that he will have ordered tomorrow afternoon in the right size.  So yah, the brace is too small, but she is wearing it.  How much sense does this make?!  
Anyway, I can't talk about the lack of organization of Phoenix Childrens or this Hanger brace place anymore.  Drives me INSANE.  Love our doctor, can't stand the fact that we went sent out to get this done.
We get home around 2:30 and YEP... you guessed it. BATH TIME!  YAY!  I put some shorts and a tank top on and crawled in with her.  It's hard for her to sit up for very long, since her back strength isn't great yet.  She was SO happy!  I bought her the Yo Gabba Gabba character bath set, and she was out of her head!
Her skin has black fuzz on it!  SO cute.  I like her little hairy legs. :)  Her skin is also flaky and scaly.  Bruised in a few spots, but not as bad as I was expecting.  The nurse said her cast was so well cared for and super clean.  DUH!!!  My hour plus bath time routine EVERY NIGHT (yes, you heard it, every night) payed off.
We get out, lotion her up, and dammit.  I forgot how to do this brace.  It looks close enough, I guess.  Gotta get through til tomorrow where I am not all steamed up, I can pay better attention. :-P
All in all, it was a good day.  I am still nervous of holding her up, how to do the brace, etc.  The brace is hilarious to me since it was $200 for the extra one (I got 2).  It cost probably about 5 cents to make.  Total rip off!
All I do know is that things actually may return to semi-normal soon.  
I am exhausted.  Thrilled but exhausted. 
PROUD.  I am SO proud of my baby.  I have heard nightmares of how sore kids are and how they scream for days.  Lucy acts totally normal and even grabbed her foot and tried to eat it!  haha.

Off to nap.  I am (as Lucy says) "all done.'

Walking in to PCH for my cast off!

Rockin' my new Yo Gabba Gabba shirt!

On the way to get fitted for the brace


Her leg that was casted.  Scaly as heck!

The 5 cent (oops I mean $200) brace

YAH BABY.  The moment I have been waiting for!

Can't wait to give this car seat back.  I hate it.

YAY get this thing off me!

Monday, June 4, 2012

One more night!

Did I ever think that I would be saying ONE more night?!  Nope.
Well, technically, it's TWO more nights, but since today is almost over, I am going to go with ONE more night! :-)
It's so weird... a total roller coaster of emotions right now.  Of course, I am BEYOND thrilled to get this cast off of my baby!  On the other hand, I am nervous for what is to come... how sore will she be?  How long will she be sore for?  Will her hip socket continue to grow?  blah blah blah... the worry doesn't end with the cast removal.
Like I said in my previous posts, Lucy is going to have to wear a foam brace that is removable around her thighs to help wean her off the cast, and keep her legs in the correct position to encourage proper growth. We are expecting about 6 weeks full time.  Of course, it can come off for baths and diaper changes.  I have requested two of them since we want to go in the pool! Heck, we pay enough every month for insurance, they can cough up another brace for us.
13 weeks.  2 days.  PLUS a 12 day 'practice run' where the hip slipped out while in the cast... total of 16 weeks.  The longest 16 weeks of my life.
I am not going to lie.  Each day feels like a week.  Each week feels like a month.  I don't know how in the heck we have survived it, but somehow, we have.  Yes, I feel totally robbed of the 'toddler' phase of my baby.  To some, that may sound like a treat, but really... like I have said, I would give anything in the world for this to have been ME, not her!  I would have given ANYTHING just to see her walk when she turned one, to see her run through sprinklers once it got hot, to see her be 'normal.'  I was robbed of that.  No doubt.  That's neither here nor there at this point, but these emotions never truly go away.  I will forever remember these experiences and never EVER forget how this feels.
I remember vividly Feb. 17th, handing Lucy off to the nurse to go back for surgery.  I don't think I will ever forget that feeling of total helplessness.  Handing MY baby girl to complete strangers.  Running into the bathroom at the hospital afterwards and bawling my eyes out like a baby.  Waiting in the waiting room for Dr. Segal to come tell us how our baby is. We had to do this THREE times during the last few months, and I swear, it NEVER gets easier.  We have sat by her bed three times now in a recovery room, watching our little girl come out of anesthesia.  Laying there like a perfect angel, breathing in scented oxygen.  We have watched her wake up with her legs bound by a cast three times.  I hate that this has become 'normal' for her.  I hate it... We have just kept busy to keep our minds off it, but in the back of my mind, every single day, it KILLS me.
How did we pass the time?  Honestly, it feels like such a blur now.  We did something EVERY single day.  Aquariums, zoos, museum, walk the mall, visiting family, etc...We are so lucky to have some wonderful friends who gave up many days of hitting the splash pad or pool to join us at our indoor activities.  You know who you are, we love you!
My sister.  I can't say enough good things about her.  She has been our lifesaver, and has come to help us out SO much.  She has been our shining star through this whole experience.... HUGS to you Mel!
I also want to say thank you to our amazing Facebook group.  There are moms and dads from all over the world that have been the most amazing support group ever.  I have made some great friends on there, and I feel like all of our kids have gone through this together, even though we have never met!  Let me tell ya, if I ever go back to England, or decide to visit Australia or New Zealand, I am going to party it up with these women!  Of course, the 'amazing Americans' on there have been a God send as well.  You ladies are DA BOMB!
I remember sitting here somedays thinking, 'it's only 7 am... I have 62 days left of this. OMG.  How am I going to do this?'  Yes, the countdown always begins the minute the surgery is over!  
There were some days where I cried all day.  Actually, there were weeks like that.  Many, many weeks.  There were days that I looked at Lucy... at her perfect smiling happy face and just thanked God that he gave me the most wonderful, well adjusted, happy, trusting baby in the world.   I don't know if I could have made it through this well if it wasn't for her amazing personality.  I am beyond proud to be her mom, and she has taught me more about life than anyone or anything.  Even in a spica cast, only 1 years old, just learning to say words... she has taught me unconditional love.  Thank you God for giving the best to me!  
Well friends, my next post will be with pictures of the cutest legs you have ever seen.  (NO, not mine!) LOL~
Wish us luck on Wednesday... We are so excited... yet scared... yet thrilled... I don't even know what I am right now!  (On top of this, being pregnant has me all crazy in the head.....)
Over and out from sunny Arizona.  

Lucy's brother SLIM checking out her new outside toys!

Our last casted carousel ride today!

Yes. Shoot me now please...

Aquarium day!

Even though she is in a cast, that doesn't mean we don't dance.  DANCE PARTY!!!!
This was taken at the museum a few weeks ago :-)  

Bye Bye Fishies.  Next time you see me I will have legs again!