Sunday, February 17, 2013
Thursday, February 14, 2013
See how she grows....
We've been getting some new faces.......
Some Sad
Still some concern in her brow
Some happy
She's our little snuggle bug
Hosea
He and Shiloh have opened a store. They glue beads together and sale them to us for a cent, "so it will be a good deal". They love to tell us the "store is open for business".
We had a family night and did a fire and hot dogs and mallows out back, they love this!
Hosea's been brushing up on his culinary skills. He loves making scrambled eggs.
When i put Salem on her play mat, he exclaims "yeah I get to snuggle". Here he is snuggling.
He likes to play shoot guns with Aggie. No I do not let him shoot Aggie. He pushes her around on her horse while she says "neigh, neigh, neigh........" then he stops and throws his velcro bullets at her "gently". I guess it's sort of a cowboy and indian variation? They both really like it.
He ran his eye into the corner of the kitchen chair while walking with a shirt over his head. I asked if he was ok and if he needed anything and he replied "my pirate eye" and ran off to fetch it.
I love my little dude!
Tuesday, February 12, 2013
Muscle Biopsy
Aggie had a muscle biopsy today. They called last Thursday and decided it would be better done sooner rather than later. We met the surgeon Monday, had surgery this morning. We won't know the results for several months. God is good and has provided for us in many little detailed ways. We are thankful, and a little tired. Makes me long for the rest that will never end in the life to come, where my heart should be longing for.
Saturday, February 2, 2013
Aggie-Genetics/School
We've heard back from the genetics Dr. this week. The good news is Mike and I are not carriers, which is fortunate for the other children. The location of aggies gene mutation is so rare that there is only one other person reported with the same mutation in that location, but even then the mutation it's self is different. The Dr. wants to do another muscle biopsy so they can test the effect of the mutation on protein, allowing them to possibly project the effect the mutation will have on Aggie at a cellular level. We have an apt. with the surgeon in March. This news is two fold for me, as it is nice to know what is causing Aggies difficulties, but having to put her through additional testing/trauma makes my heart sink. As she grows older and stronger these things become more difficult, as her understanding is minimal.
She is loving school. We like it too. I am told that she is very popular, as teachers pop in to play with her. The only other little girl in the class has become jealous, I'm told. Aggie has no clue. She has started doing a swim class every friday at school. It is an 8 week program where they do therapy in the pool. A neat opportunity for her. It is a perfect amount of time allowing me to get most, if not all of school done with the other children before she returns home.
She is loving school. We like it too. I am told that she is very popular, as teachers pop in to play with her. The only other little girl in the class has become jealous, I'm told. Aggie has no clue. She has started doing a swim class every friday at school. It is an 8 week program where they do therapy in the pool. A neat opportunity for her. It is a perfect amount of time allowing me to get most, if not all of school done with the other children before she returns home.
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