Tuesday, November 12, 2013

Week 11 Complete

Chugging along...
Yes, it's definitely been a while since I've written an update on Kate's hip situation.  The reason?  Until recently there's been nothing to say!  We knew from the moment we found out Kate had hip dysplasia that it's something would take time.  It's a whole lot of waiting...waiting on her to grow to see if the harness would correct her hip.  She really had no problems over the last month...it was easy.  She even figured out how to get her legs out of her harness.  Which meant I had to start keeping socks pulled over her feet at all times...

October 29th doctor appointment
You may or may not remember this, but Kate's doctor told us at her last appointment that if Kate's x-rays looked good, she may be able to start only sleeping in a brace.

This made Brian and I ecstatic!  We watched the calendar anxiously awaiting October 29th.  We just couldn't wait for her to be free of that harness.  Our thoughts?  No more binding chest and shoulder straps to rub her skin or annoy her during tummy time, no more little indentions on her legs from the harness straps, no more socks 24-7, no more "policing" her legs during her baths, no more "bulk" and extra material when snuggling our sweet girl.  We were excited to feel her little body when he old her close.  We were excited to watch her play unrestricted...to watch her learn to roll over.  I was excited to not have to consider her harness when choosing her clothing.  No more looking at that dirty-looking dingy harness.  I mean, the list continues.

You can call it whatever you want: negativism, realism, or just plain mother's intuition...but somehow, I knew I shouldn't get my hopes up.  It's just that...it's a lot easier said than done.  I said to my mom and Brian on many occasions that month, "I know I shouldn't get my hopes up, but they're already there and there's not much I can do about it."

Our doctor came into the appointment with her latest x-rays (that morning) and her old x-rays.  Guess what?  Good news!  The hip is in socket and is growing in the direction we want it to!  Praise the Lord!  So then he proceeds to tell us he's ordering her a new brace that would only be the bottom half of her body, and that in a few more months' time, she could only sleep it in.  WHAT?!?!

Long story short (and trust me, you want to be spared...), our doctor "spaced" last appointment.  (His word, not mine.)  Although he found in his notes where he told us if Kate's hip had good progress, we'd move to only sleeping in a brace.  He just doesn't know why he told us that.  He assumes he did the math wrong and thought we were further along in her hip journey than we really are.  All he could do was apologize, but to me completely honestly...at the time, I didn't care that he was "sorry."  I was really, really sad and mad at him for making a careless mistake.  That's a horrible thing for a doctor to do to parents.  If he was not known to be THE BEST at what he does, we'd have another doctor already.  His bedside manner stinks.  But Kate's hip is getting better.  So we press on.

Rockin' in the Rhino Cruiser
Fast forward through all the emotional mess of getting used to a new brace again...and this is it.

It's a Rhino "Cruiser."  It's called a cruiser because it's supposed to allow older babies more mobility.  Problem is, Kate's muscles are on the weaker side for her age because her mobility has been restricted since 2 months old.  So, whereas some babies can scoot and walk in this brace...I don't see that happening for Kate.  Her doctor did say she could do a little tummy time without it every day, so we really make the most out of that playtime.

What we like about the new brace:
1.  It comes off!  We have to take it off for every diaper change and to change her clothes.  She can't wear it in her carseat because her legs are too wide.  So occasionally, we do get to hold our sweet baby without it.

2.  She can wear pants.  In fact, she has to wear pants or tights because she has to have something between her skin and the brace.

3.  There are no straps around her shoulders and chest, so it's easier to do her physical therapy and stretches for her torticollis.

4.  It's a bit easier for her to do tummy time in the brace as far as lifting the upper part of her body since there are no straps up there.

What we dislike about the new brace:
1.  It comes off.  (haha)  Changing diapers takes a long time....lol.  All day it's on, off, on, off, on, off.

2.  She is extremely limited in what she can do to play.  There's no rolling or much movement of her legs at all.  She just kinda lays there on her back if I'm not holding her up, which is bad for her head.

3.  It's bad for her head.  Kate's torticollis caused some "flat-ish" spots on her head early on.  Her pediatrician assured us that as she began to roll and sit up that she'd even it out and that she wouldn't need a helmet.  However, we have another 6 weeks of not really being able to roll during the day.  Even then, she'll still be sleeping in it at night, which will keep her on her back for about 11 hours at a time.  Needless to say, if we have to go the helmet route eventually, we'll be torn up about it.  We are truly tired of forcing our sweet, healthy, perfect baby to wear a corrective device.  We just want to let her be a baby already!

4.  It's hard and bulky.  It's plastic and foam as opposed to fabric like her harness, so she can be a bit of a challenge to hold and carry.  You have to get creative and change positions frequently.

The outlook
Christmas day is the plan to let Kate start only sleeping in her brace.  We are in prayer that we would not look SO forward to that day that we forget to savor the moments we have now.  She is a much, much happier baby out of her brace, so that makes it hard to put it back on when the time comes.  Right now Brian and I spend our time wearing ourselves out trying to think of new, creative ways to stimulate and entertain her and make her laugh.

I am fully aware that the honesty of our feelings can come across as whining.  Sorry if it does.  But really, we just need support through prayer.  And I feel that giving people the false picture that everything is peachy going through this journey is just plain dishonest and fake.  I could paint the picture that we don't struggle and have no problem staying positive, but it's not true.  That takes serious energy and work...and we're human.  You probably don't understand it, and that is completely fine.  We have good days and then we have days where the human emotions just get to us.  All I can say is...thank goodness we have a Savior to lean on!

To say that we need prayer can be vague.  So, I'm going to be more specific.
Prayer requests:
Please pray...
1.  for continued progress in the growth of Kate's hip socket
2.  for continued progress with her torticollis and muscle development
3.  that the sad, frustrated, weary emotions we feel on weak days stay few and far between
4.  that the Lord would provide us with lots of energy...physical and mental...to keep her as happy as possible in the midst of her challenges

Thank you from the bottom of our hearts for your prayers and your support.  Thank you for the fact that so many of you care even though you may not understand.

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