Monday, March 18, 2013

Preview: The Big Day

My brother is getting married soon.  

The girls CAN'T WAIT!!!

Flower girls


We got a ton of snow two weeks ago, it was awesome.

Eleven inches of heavy, wet snow was too deep to sled and walk in, but it was PERFECT for building!

One sore back and two sore arms later, the masterpiece!

My stupid finger got in the way

Pic taken from inside--four people could actually get in there

Hot Chocolate time inside the igloo!

SLEDDING VIDS (too tired!)

Discussion of Night Splints

I had this great idea to write a nice post regarding the arguments for and against night splints (some immobilization contraption that involves stretching during sleeping hours), complete with peer-reviewed literature and references.  I still think this is the way to go, but every time I think about putting it together, I run out of time.  So, I'm hoping to publish this post and edit when I magically have the time and mental energy.  Here goes.

I've heard for many years (going on five now) that Elena could benefit from wearing some sort of brace at night.  Note, I've never heard this from her orthopaedic doctor.  But her orthotist, her regular physical therapist, loads of other therapists and tons of parents support the idea of wearing them.

When the idea was first introduced to me, I absolutely refused.  Not because I didn't think it was worth trying, but because we were deep in our Nighttime Issues already--in case you're new to this blog, we had screaming problems with Elena for two whole years (average four hours per night) before we got professional help--and I wasn't about to mess with her bedtime progress by throwing a leg cage in there.

Elena has contractures and tone issues. She has had surgeries to address both.  She still has problems in both of these areas, but they are less than they used to be.  Her high tone is how her CP manifests--that isn't going to go away, or fade.  It's here to stay, it's how her body operates.  I understand that.  My goal is to have her try to tame her tone when she can, and to work around it (or with it) to move in the best way possible.

High tone often causes contractures (shortened tendons and muscles).  Surgery helps with this in a major way.  Unfortunately surgery is not always an option, as it creates scar tissue and net muscle weakness with every incision.  I do think E will have another lengthening surgery, but I want to wait until she's older, to try to ensure her muscle strength and stability.

Stretching is a great non-invasive option, but it is slow, time consuming, uncomfortable, and results are not obvious.  I have a daughter that likes being active; all of the professionals advocating stretching are talking about hours of stretching, not minutes.  There simply is not time in Elena's day for an adequate stretch, nor do I want her sitting or lying for hours at a time when she could be playing.  Cue the night stretching idea.

Logically, I can't imagine how stretching for 8+ hours every night can NOT help a person prone to contractures.  At minimum, it seems it couldn't hurt.  Elena sleeps on her side with her legs curled in,  she sits with her legs bent, and she walks all day with her legs slightly bent.  Her legs are bent all the time.  Her hamstrings and achilles tendons are not long enough for her body to stand up tall, even if her tone was normal.  How would her legs look/move/operate if they had the chance to straighten all the way?

Elena's orthotist prefers a sleeping stretch to an awake stretch b/c it's the only time her tone is essentially "turned off", where her body is at rest and relaxed.  When Elena is awake, every movement recruits extra muscles--making a stretch more difficult.  Her orthopaedic doctor actually counters this, stating the  night bracing is controversial since the muscles are relaxed (I don't understand this, I'm going to have to follow up on that).  He is absolutely correct that the efficacy of night stretching is questionable.  It does not address tone, which is the primary issue when it comes to Elena's movements and stance.  I think his opinion is that stretching to attend contractures without addressing high tone is useless.

He may be right.  I can't find a single peer-reviewed reference that regards night stretching (alone) for children with cerebral palsy that improves their gait, or range of motion (ROM), or stability in the long term.  I see publications about stretching in conjuction with Botox injections, or surgical lengthening.  I have read about serial casting, but the subjects return to their ROM baseline within six months (after spending nearly two months in casts).

Part of the problem is there simply isn't enough patients that are similar enough to warrant a study.  Another issue is the extreme changes in patients due to growth; any benefit to prolonged stretching is quickly thwarted by growth with high tone--stretching simply can't keep up.  Or, as they grow older, kids simply won't tolerate wearing splints long enough to see any positive changes.  Who can blame them?  It's certainly not comfortable, and what child is mature enough to see through a lengthy nighttime trial--which might be worthless?

Hopefully mine.

We've been at this for three weeks, nearly 1/5 of the way through our trial (to end mid-June).  I do believe I have seen a change in the way she stands--at "rest", holding on to something (not all the time, just some of the time).  The only other difference is it is slightly easier to do one hamstring stretch (we do nightly stretches, for ~30 seconds each, every night).   She was very reluctant to bear weight on her right leg (she did not realize she was limping) for a two days last week.  Other than that, no news to report.

Friday, March 15, 2013

Super 8

I'm just starting to plan Elena's Great 8 birthday party.

If you've been reading this blog, than you know that we tend to go a little crazy at birthday parties.

Elena chose her theme as "The Octothon".  There will be 8 silly games, played in teams.  If you have any game ideas, preferably that do not require amazing balance or athletic ability, please leave a comment!

If you'd like to send E a letter (snailmail)--SHE LOVES MAIL and it would be such a nice surprise!

Please email me at cpmom2009 AT yahoo DOT com if you're interested.

To our regular pen pals, thank you so much for your cards and letters.  We'd love more exchanges!