Sunday, July 18, 2010

Tid Bits and what nots

Ashley's (Lulu's donor) family came to see us today as they were in Salt Lake for a baseball tournament. It was so nice to see them and to feel their love for LuLu despite their great loss. This is a really neat family with 3 amazing kids. Its a privilage to know them.

Tappy toes on our piano

Not all childrens markers are washable. Found this out first hand. Didn't come off for days...don't think this is her color.

Love him.

Love her.

"Her" is doing very well. Her EBV levels are under control and all the other markers they look for with her labs all look great. We are proud of her and haven't had to be inpatient for a few MONTHS! She passed clinic last Monday with flying colors. She is still on the wee side when it comes to LB's, only in the 3rd percentile but we are glad she's on the charts.

She is filled with good spirits and lots of energy. She doesn't ever crawl, rarely walks, just usually sprints on her tippy toes to wherever she is headed. I love it. I love her. What a miracle I hold in my arms everyday.

Love you LuLu.



Thursday, July 8, 2010

Live, Laugh, Breathe

My sweet friend Kendra lost her baby to a rare genetic disease several months ago. She is honoring what would have been her FIRST birthday with a carnival to benefit funding to find a cure for SMARD. This will be an amazing event that she has worked her heart out for. Open to all, please come! We all drive up to Farmington for Lagoon...this will be so much better.
This is an amazing Mum showing her love to her baby. Honoring her, helping others. Her Mum is quite wonderful.

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