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Monday, August 31, 2009

I asked for it...

Have you ever been precariously perched with one foot on a (rolling) tool chest and the other on a pile of camp chairs? Of course you would be reaching well over your head for a bucket of softballs, high on a shelf above you. And then of course, you would tip over the bucket of balls and have thirty (not!)softballs cascade onto your head. And perhaps then you'd fall off of said tool chest and land on your (luckily, well-padded) petunia on the pile of camp chairs. Only damage was to my pride. As about nine teenagers where walking by my garage at that exact moment. Perfect.

Sunday, August 30, 2009

First Sleep(less) Over

Brooke had her friend Adrienne over for the Wizards of Waverly Place- The MOVIE!!! premiere.(Like, super neat mom!) and for her first sleep over. Ever. Luckily Adrianne is a sweetie and so is Brooke, so it looks like it won't be her last...

We started the festivities with homemade pizza...
Oops. I was totally paying attention. How did Sam hijack the cheese?
Bedtime.
Or at least "STAY in the bedroom" time.
Breakfast was waffles with strawberries, whip cream and maple syrup.
(it's easy to be the "fun mom" for one weekend...)
Oh. And the movie was really cute as well.

Wednesday, August 26, 2009

Sam

On Thursday Sam had her appointment with the specialist at Seattle Children's Hospital. It looks as though she does have some form of mitochondrial disorder. This is not great news. But, her dr. says that because she has gained some ground, her outcome is better than most of the kids he treats. I don't really know a lot at this point, but will try to fill you in... Your mitochondria are the powerhouses of your body. They have (apparently) their own DNA and there are around 200 diseases that can be caused by faulty DNA. We don't know what specific disorder Sam has, just that she falls into this category. It is reassuring on one hand, to have a dr. agree that there is something there, but all of a sudden, it real. I have an ache in my heart when I look at Sam, that wasn't there before. A sadness at what we could lose. Mitochondrial disorders are usually progressive and that's a scary thought. When I looked it up online at http://umdf.org (this is the website that her dr. gave us and he says is accurate. But super confusing...) a lot of the signs and symptoms just fit what Sam has going on. She is still really mild and seems normal, no seizures or anything, but the list just fits. Not much has really changed in the last week, just our perceptions. They did some genetic testing to rule out Spinal Muscular Atrophy and a couple of other things. He doesn't think she has this, but would like to be 100% sure. The next step is a muscle biopsy and he thinks we have a good chance of getting a specific diagnosis with that. I don't want this to be a sad post, Sam is doing great and we feel so blessed to have her. She has had some wonderful blessings and we have faith that the Lord is watching over her and our family. Never have we felt so surrounded by His love. It's like our Heavenly Father's arms are wrapped around our family. To any who doubt our Savior's love, I say to you, "He lives. He knows us. He loves us. He is involved in every aspect of our lives. He has felt our pain and knows our sorrow. He can also give us joy and peace." Which is what we feel, even with the pain and questions. Life is good and our family is well. We love you all and want to keep you updated. I'll let you know when we hear about the genetic testing...

Sorry this is long, and a little heavy...

Monday, August 24, 2009

Quote of the Day...

Alix - "Here mom, try this. It's super yummy!"
"What is it?"
Alix - "Watermelon dunked in salsa!"
Nice. Maybe next time. Not.

Wednesday, August 19, 2009

More pictures than you want to see...

Unless you are my mother... We went on our annual pilgrimage to Mack's Inn, ID and stayed at our (and by our, I mean Tom's family...) cabins. Rather than bore you details, I thought I'd bore you with pictures instead. I would just like to start by saying NO LEECHES this year. Made all the vomiting okay. I'll take flu over leeches every summer...

The girls at the end of the dock... (my favorite picture of our whole vacation...)
Brian and Brad took us boating in IF. Here is the safe boat... Here is the fun boat... (video to be posted later!)
Feeding the fish at Big Springs
Riding the quads
Erin and Alix learning how to cast. This was their first year with their own fishing poles
All the kids loaded for the float trip
Seriously involved in snow cone eating
Filling up our water bottles out of the rock at Howard Springs. Best water in the world...
Spent an afternoon in West Yellowstone
Look at all the fish they caught! All the kids caught their own fish
That's a lot of loose hooks flying around...
Panning for gold in Virginia City.
Sam wanted in on the action
I got to see my little bro. Ben and his new baby. And his older baby as well. Cute family they have over there in Rexburg!
All tired out. Time to go home...

Wednesday, August 05, 2009

Sam Update...

Sam was re-tested yesterday at therapy since she had her birthday. When we started OT/PT six months ago, Sam tested at a -4 (which is really delayed). Yesterday she tested at a -1. Which is awesome! She wouldn't even qualify for state benefits at this point, if she wasn't already in until she turns three. She used to be about 50% of her age, developmentally. At six months she was like a three month old, etc. This time she "should" have tested at around six months old, but she didn't... She tested at nine months. Which means she's only 25% delayed! (You can celebrate the strangest things...) She's catching up, and I don't think that anyone just looking at her would guess that something is wrong. It helps that she is little and looks like she's nine months old... She still has some big appointments coming up, but we are so happy right now. It's an amazing thing to hear her laugh, to watch her do things that we've been practicing for months and now she can finally do on her own. It's amazing what you can learn from a one year old...