It sure has been a long week. Kaden is still on oxygen intermittently. His tummy isn't working quite right and we're pretty sure he has a secondary infection. Lot's of wet coughing and suctioning. The amazing thing is.... he's dancing around tonight singing "welcome to the Space Jam". He is wearing a white tank top and has informed us that he "feels" like a real basketball player. He followed that up by saying "oh, wait a minute, I am a basketball player Mommy. Just ask Daddy and Evan." He amazes me.
I'd like to share some great news. We've been very blessed this week in several ways. With the support of a wonderful family I met, I just might be able to start networking and finally creating the advocacy and awareness support group for families like ours! Please friends, spread awareness about autonomic dysfunction. You never know who may need to hear about it.
Music
Sunday, May 20, 2012
Sunday, May 13, 2012
Same old issues this month folks. Intermittent oxygen and lots of observation. Kaden can write his own name now and is still excited about Mondays. He loves having Daddy home more often. He's getting more imaginative every day, but is struggling again with gaining weight. He's stayed the same weight despite our new efforts using olive oil. The whole family helps take care of him and Kylee has become his pre-school teacher. He responds very well to her. It's so nice to have her time with him in addition to the learning pages he completes for Gran and us. Evan's been playing with him outside a little bit more, and he gets to talk to Brandon on Skype. He's so excited Brandon's coming home in just two weeks. Daddy continues to play basketball and several imaginary games with him. He continues to have apnea and some low oxygen saturations so we still monitor him very closely. We are still waiting on the geneticist to help us figure out our tricky little man. Other than that, he's doing well.
P.S. He lost his first tooth!
Love to all, Julie
As for you Kaden- today of all days is a day to celebrate being your mother. You truly are a gift along with your siblings, and I couldn't be more blessed as a mom.
P.S. He lost his first tooth!
Love to all, Julie
As for you Kaden- today of all days is a day to celebrate being your mother. You truly are a gift along with your siblings, and I couldn't be more blessed as a mom.
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