As far as days go Id have to say Thursday was a 10... I got a call from our equipment person about Skys wheel chair and it sounds like it will be hear early next week. I cant wait to get it, Ive been thinking for a few weeks now what I could paint on it. And I now know, on the back it will read, "never give up, always believe". I cant wait to see my Sky up and going again....
I also got a call from Senator Mary Haugen, she is coming out to the house in August to meet Skylar and our family. Im tring to get a bill in place to include SMA blood testing with the infant screening test at birth. She should be able to get me headed in the right direction. So many kids are effected by SMA, unfortunately it goes undetected and undiagnosed in allot of kids who die early. I would of liked to know at Skylars birth, even though we didnt see any signs of SMA until he was 8-9 months old it would of allowed me to be very proactive and educate myself better.
And then Skylar and I just had the best day together, I set a goal for him about 4 months ago, that I wanted his up time to be about 8 hours a day, well he is up on average now for 7 to 7 1/2 hours a day, Im so pleased with him. We painted and colored and laughed so much yesterday, he thought it cute to color on Mommy's face, hands, arms and legs. The look on his face was just to cute, and I must say I havent washed any of it off yet.
2 comments:
Oh Skylar you are a great artist, I love all the artwork on your mommies face. Glad you had such a fun day and I can't wait to see you driving your new wheels.
Heidi & Junior
skylar your so wonderful!!! i love the video ! hopefully soon we come up and play with you!! your getting so big!! you have the best smile!!!!
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