Happiness is... thoughtful friends

Arriving just in the nick of time to save us all from the funky week, was a surprise package from our dear friend Hannah, her hubby Vince and their sweet, joyful Viv. Inside, a thoughtful note and the most adorable book Sugar Cookies: Sweet Little Lessons on Love.

This afternoon, the kids and I read it a few times. Then, they sat together and "read" it. Preston said, "Once upon time people make cookies," which is not (in any form whatsoever) how the book reads! Too funny, though! Gracie's favorite page is (quite fittingly for my love bug) about "Expansive Love" and features a little girl dressed in a leotard and tutu with her arms outstretched. (She loves the little girl!)

It is the sweetest (pun intended) book ever and it makes us so very happy. Thank you H+V+v!!! It is just what the Flock needed to brighten our days! You epitomize thoughtfulness.

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On Friday, Gracie saw her orthopedist for a routine follow-up. He kindly signed the prescription for her new wheelchair (fitted and measured the day before) with no questions asked, so that ball is finally rolling in the right direction.
As I do with most appointments, I had a list of hot points to discuss...

- Scoliosis - - has her curve progressed?
- Pelvic rotation - - is there an underlying problem somewhere other than her scoliosis causing this rotation?
- Right knee and ankle turn in when walking - - does she need any sort of bracing?
- Lack of weight bearing on right - - again... bracing? Is there an underlying issue?

There is good news and not-good news...

- Curve appears stable at this point. Good. (Still spine surgery in her future...) No need to brace her spine during the day. Good. (She previously had a brace, but wouldn't move a muscle while wearing it. Her whole team agreed that mobility was the most important thing so long as her curve didn't rapidly deteriorate. For those who don't know, a brace won't correct a curve, rather it helps slow the progression of the curve.)

- Pelvic rotation stems from the scoliosis... no other underlying cause. Good.

- Right knee and ankle don't consistently turn in with all of her steps so she doesn't need orthotics. Doc watched Gracie walk from the front and back without pants, shoes or socks (holding my fingers for balance support... first time she's walked any distance in a doctor's appointment! It was way too stressful in the past!). All good.

- He says her (teeny tiny) feet (size six... baby shoes!) are "beautiful, flexible and need no special attention!" (Eh hem... other than her beloved pedicures from Mommy!) Good.

- Lack of weight bearing likely stems from the rotation caused by the scoliosis. The curve and subsequent pelvic rotation have caused a leg length discrepancy (which we've known for years) and she always has her right knee bent. Clearly, muscle strength and development have been affected. There's not really anything to do about this other than hope, with time, she begins weight bearing more. Unfortunately, until her spine is straight, she likely will have that right knee bent. And, the longer it's bent, the less likely the muscles and knee joint in that leg will function normally. Ugh... wait and see.

- Because of the scoliosis that's caused the pelvic rotation, he is extremely concerned about her hips. After reviewing the additional hip film he ordered, he was pleased that her hips look "okay" given her rotation. However, there is spacing above the joints and his opinion is that if we don't do some preventative body bracing (yes... body... not just back), her hips will eventually come out of socket (painful) and she'll need surgery (very painful). NOT good.

He said he'd like her to wear the brace at night while she sleeps. Um... while she what? I explained her "sleep" pattern and also explained that she doesn't (won't) wear clothes at home, including pajamas. He said the brace won't hurt her skin if she's just in a diaper... so that's "good." I realize that it's a really bad thing, especially for her hips, that my sweet daughter likes to sleep (when she does it!) on her side curled in a ball. I understand that this is something we have to try, regardless of how much she hates it (and regardless of how much we hate making her try).

If we don't make an honest effort to put her in this brace and something does happen with her hips, we won't be able to live with ourselves. If we try (and try and try) and we aren't able to get her to comply, then at least we know we tried. But I'd be a liar if I said I am not dreading this with every fiber of my being. If she hated her old brace that covered "only" her torso, can you even imagine how she's going to react to one that goes from just under her armpits all the way down her legs... one that will force her to lay on her back? (Never mind my concern for my trached child not being able to be on her side at night to cough easily. I guess my lack of sleep (and hers... duh) is about to hit serious overdrive.) As if you can't tell, my "Pollyanna" personality is out the door on this one... say hello to "Realistic Rhonda" - - she knows this won't be pretty.

So, once we get through the heart cath this week, we will be getting Gracie fitted for a full body brace. Stay tuned.


*Crystal... can you please refresh my memory as to what led up to Eva's hip surgery? Thanks!