Thursday, July 1, 2010

It's real.

You know how as a mom you know things, you just KNOW them? I have shared with Oscar, my parents and a couple of friends that I think I am seeing Garrett struggle more physically. My close girlfriend, Kim, Barett's mom, about whom I wrote and CRIED about a week ago, even mentioned last week that she noticed Garrett struggling more than ever trying to climb into her Toyota mini van. But most friends and relatives can't see it. I can see the increased struggles my little guy is having. It's physical, and it's emotional for him. And now we are up in Montana where I do see Garrett much, much more active, but still struggling more, but he is at least feeling less confined by the extreme heat we had in LA. Dr. K, the mito specialist we see in Houston, said in her notes that he has a "waddling gait." I certainly see that. I also see he isn't running much either. He asks me to carry him more. He tells me now, "I tired!" But he doesn't want to nap...he wants to just stop a minute or be picked up and carried. Today he limped a good bit all day and showed me his left knee when I asked what was hurting. . At this stage in his ability to communicate, I cannot tell if it is a joint issue or maybe the lactic acid build-up that burns his quads like Addie has. Hhhmmm. He is having much more fun outside here. At home he will go out for a few minutes, then come in to get milk and rest, screaming, "It HOT, I WANT MILK!!" And bless his heart, he goes back out a few minutes later only to return shortly, very frustrated and screaming for milk and about the heat. Addie seems to have blossomed here. She runs so freely, and just has that zest for the outdoors I can't see when it is so hot.

Today was in the upper 70s with cloud cover and a couple of light showers. The little showers were beautiful moving across the mountains and the valley. We had a fun time joining the local gym, The Wave, where there is are three indoor pools, one a kid pool with a walk-in pool, fountains, those buckets that dump water constantly, and a really nice water slide that Addie and Ainslee wore out!!! Garrett had a BLAST too, but preferred to be attached to me...a new thing for him. We planned to go see Toy Story 3, but then on the way out of the Wave, I noticed the truck we are borrowing from our generous hosts had a very low tire....with a visible nail in it. We then drove to two tire places before someone wanted to fix it, and then they took an hour to do it. Can't just pull and plug anymore, have to take tire off and patch, but it was free!! So we played Frogger across a 4-lane and ate at Pizza Hut and thoroughly enjoyed a leisurely visit to the Army Navy Surplus store....much less primitive, less true surplus than I have seen. The girls enjoyed trying on funky sandals, chukka boots, snow boots, ski hats and such, and we left with a canteen and carrying bag for Ainslee for a total of $6.00, $3 for each item. Yup, NO SALES TAX!!!!!! Gosh, I love this state!!!

Garrett sleeps soundly in a pack n play in the loft with me tonight. Ainslee is in her bunk downstairs curled up with a dog, Katara, a mix who looks like a black and red dachsund with long legs. Ainslee is so in love with her!! Addie has an 80 pound white greyhound, Lilly, curled up with/on her, and couldn't be happier!! Then there is the neighbor's 14 year old, precious black lab named Summit, curled up on the rug on the floor between the girls' bunks. Anyone who knows my kiddos and me knows this is a dreamy night for my girls to have their canine pals IN BED with them!!!

Hugs to each of you tonight, especially our family so far away and our fellow Grizzly-like moms fighting for their kids!!!!

Godspeed,
CL

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