Sunday, May 30, 2010

Summertime Goals

We had the pleasure of enjoying a sunny Memorial Day weekend with Nana and PopPop in town. We spent a lot of it outside, which is a new thing for us.

Last year, Elena could NOT navigate grass. At this time, E can navigate most surfaces (grass, gravel, large stones, wet surfaces, dirt, small roots, mulch) using her loftstrands, depending on her energy level for a given amount of time/distance. She can travel all these surfaces, on a mild incline or decline, about 100 ft before she needs a break.

That's a big improvement from last year, which is super fantastic!

This past weekend, though...we found another obstacle to being outside.

HEAT.

Since E's exposure outside was limited due to terrain, we never thought about how the summer heat would sap her energy. We even signed her up for a week-long day camp right when school lets out--thinking how she'd LOVE being outside, and would love to be around friends. Then we went to visit. The staff was great, the terrain very difficult--but the biggest issue out there for her endurance isn't just terrain. It wasn't even hot out yet, and she was d-o-n-e after 45 minutes (the camp isn't air-conditioned). We went to a park today, where she was in a stroller most of the afternoon, used her crutches for 50 paces, and walked maybe another hundred feet in total--and she looked terrible. Her gait was distorted, she dragged, her limbs heavy from exhaustion. The temperature high was 88°F, and we were out for no more than 4 hours, half of it in shade, and E was well-hydrated. As a comparison, Vivian (18 months) ran all over the place, the entire time, red-faced but energetic.

This is good information. I don't feel disappointed--but I DO feel like I've learned something very important (besides the fact that E isn't ready for day camp).

Our Summertime Goal (in a nutshell): For E to spend more time 1) playing outside, 2) playing with other kids WHILE building confidence and strength.

6 comments:

Anonymous said...

HI AMY
MOM AND I WERE READING YOUR POST AND ALOT OF WHAT YOU SAID WE EXPERIENCED WHEN I WAS YOUNG AND STILL DO..

IT MUST BE A PART OF THE CP BEECAUSE I HAVE HAD THOSE CHALLENGES TIRING EASILY AND NOT ABLE TO TORERATE THE HEAT.. I HAVE BEEN THAT WAY SINCE I WAS LITTLE.. I HAVE DISCOVERED FOR MYSELF(MAYBE THIS MAY WORK FOR YOU) ALOT OF THE TINE WHEN I WAS E'S AGE MOM WOULD LET MY SISTER AND I OUT FIST THING IN THE MORNING(BEFORE IT GOT TOO HOT) THEN AGAIN IN THE EVENING.. I STILL DO IT THAT WAY NOW BECAUSE IF I DON'T I LIKE E AM DONE!!!

MELISSA

Anonymous said...

Very interesting - will have to watch for this in my DD

Denise
mm to Ashlyn (fmr 24 wkr)

GingerB said...

And my Hannah is the opposite right now - she goes incomptent when cold. We keep trying to meet her PT at playgrounds and she can't wok in the fifties for more than ten minutes. I thought it was just her lack of body fat but maybe it is CP related.

caryanne said...

I love those goals! They sound pretty great to me. I hadn't thought about the heat thing...but Ben (the twin with CP) definitely struggles more with heat than Daniel (the twin without CP). Interesting...

Anonymous said...

I HAD FORGOTTEN SOMETHING ELSE I HAD WANTED SAY.. DAD HAS SAID LOTS OF TIMES THAT WHEN I CAME ALONG THEY DIDN'T KNOW WHAT TO EXPECT BUT THEN WHEN MY SISTER CAME ALONG 2 1/2 YEARS LATER THEY WERE SURPRISED AT WHAT SHE COULD DO PHYSICALLY/MENTALLY..

MY SISTER IS NOT PHYSICALLY CHALLENGED.. MOM HAS A PICTURE OF ME (I WAS PROBABLY ABOUT 6) AND I AM SITTING UNDER A TREE PROBABLY ON A SCHOOL TRIP JUST DONE!!

I AM CURIOUS TO CHECK OUT MOEW INFO ON THIS TOPIC! I THINK I WILL SEACH THE NET AND IF I FIND ANYTHING THAT WILL BE OF HELP I WILL POST IT HERE

MELISSA

twinmama said...

I have definitely noticed that temperature extremes on either end of the spectrum are really hard for our Hannah. Maybe we should all move our families to San Diego, a nice stable 70 degrees:)

Seriously though, it reinforces for me, hearing about E, that it's so important to keep these things in mind when we're out and about with Hannah. In general, she just does not have the same "hardiness" as other kids her age. She also has little tolerance for going long without food. She'll be having a total meltdown and then we realize she's probably hungry and once she eats, she's a different kid.

Not sure what it is...metabolism, using more calories, low body fat...whatever it is, it's a reality...