Saturday, June 27, 2009
Aubreys party was great. She had friends from school join us, and we celebrated with noise makers, silly string, bubbles, leis, and lots of other messy things. It was great! It's so hard to believe she's 4 already! She was so amazing today. Very helpful. We cleaned house ALL day! So we rewarded her with a trip to Baskin Robbins. She loved it!
The hospital visits, rash pics, and bump on the head pics all come from Bailey. Our most recent hospital visit was last week when her temp reached 105.1. I've NEVER seen our thermometer get that high. We were able to get her temp under control and we were sent home. We're doing breathing treatments and giving her meds to hopefully get this gunk cleared up. She's been sick since the first week in May! The rash pics are from today, that's a new symptom she decided to add recently. And the bump on the head is from our Down syndrome picnic. I was sitting in front of her on the picnic table and she decided to lean to the side and fall off onto the concrete floor beneath us. Thankfully, I reacted quickly and caught her before she made hard impact. So, the result was a bruised and scratched head.
Like Bailey, I have been sick for a few months. I have an appointment next week with ENT, and hopefully we can come up with a treatment plan and get this bug out of our house. We'll also continue to work with Bailey's doctor to see if we can relieve some of her symptoms and determine a cause.
Friday, June 19, 2009
Then she asked if Bailey's friends have Down syndrome, so I named all of Bailey's friends who have Down syndrome. Then she asked if the people on TV have Down syndrome, so I explained about the little girls and boys we see on the Baby Signing Times DVD who have Down syndrome. Then she asked if she has friends who have Down syndrome, and that's where I made a mistake. I said "yes, Taylor has Down syndrome". Then Aubrey started crying, and saying she wants to have Down syndrome.
I tried to explain to her that it's something you're born with, and that those who are born with Down syndrome need people like her to help them advocate for their needs. Then I had to explain what advocate means, and finally it was time for her to go to daycare! Whew!
I want her to understand what Down syndrome is, and I also want her to feel free to ask questions. But, I'm not sure how to handle it. I've wondered for the past two years what these conversations would be like. Now that I've had one, I wonder what future conversations will be like, and how to handle them.
Wednesday, June 10, 2009
How can I tell you now,
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These past few years have been very difficult for everyone involved, especially for my dad. Nobody deserves this, especially someone who hasn't even reached the age of 60. I know as each day passes he will continue to face challenges brought before him. He will continue to be the great man he has always been. I can only hope he realizes just how much he is loved and needed.