Theo, Anne Marie, Tori...

Yesterday Theo went to see the endocrinologist in Kansas City. Fine, right? I had no one at home to put Ralph and Leroy on the bus so they went with us, too. And of course, Zhen and Ruby. *sigh*

They are my children so I don't mind taking them places. It's not always easy and sometimes it is just downright tough. Yesterday was a tough one. After the 3+ hour drive I did an assembly line diaper change and stroller load-up and headed into the hospital. Ralph wasn't looking so good. He was fine before we left, but he was running a good fever when we arrived.

The waiting room was small, even smaller with my two strollers. We waited 45+ minutes before being called back. The doctor, who was not our doctor, was huffy and busy and bothered. Why bother being a pediatric-anything if you can't be friendly?? The one bright spot were the nurses. They put us in a treatment area with a TV and a movie. They broke out the snacks and even packed us a care package for the trip back home. Very nice!

I spent the whole trip home stewing over the stupid appointment. The doc barely looked at Theo. She never touched him. They took his height and weight, that's all. We could have done that at home. But, what really got me is this: the doc we saw, who we were not supposed to see, wants Theo to have an MRI and doesn't understand why it wasn't done yet. WHAT?!

Theo was supposed to have an MRI when he was an inpatient back in August. In fact, he stayed at least an extra day so that he could have it done. At the last minute the endo decided that an MRI wasn't indicated and so we went home. Now I want to know why. I guess I need something to obsess about, because I'm not going to let it go. Also, the new doc increased Theo's meds...nearly doubled them. I'm feeling suspicious. I can't help it. I don't feel comfortable with these doctors anymore.

By the time I got home last night I was mentally spent. Ralph cried almost the whole way home. It didn't help that he had the sun in his eyes and I couldn't help him. When I got the children settled down and in bed I had the chance to check my email and oh my! Oh my stars.

Anne Marie.

I found out that Anne Marie had died. This beautiful girl had so very many people praying and advocating for her. She had a heart defect that probably would have been easily repaired in the United States. She died. Without knowing the love of a family. Why?

I tried to put some other photos up here so you could see how beautiful she was. Go to THIS BLOG to see Anne Marie through the eyes of a woman who met her, touched her, and loved her just a few months ago.

It just hit me so hard last night. She deserved better. Not because she was beautiful, but because she was a little girl, a human being. I think about the rows and rows of cribs full of babies and children who will never know the love of a mommy and a family. They deserve better. They deserve not to be caged and fed like animals.

Then I think about my Theodore. How on earth did my little 13 pound, four year old boy make it out of there alive? How? And why am I so uptight about the care he's getting. At least he is getting care, right?

Then I think about Tori. She's still alive.

I think.

You should know this: I've been told by people who know that we cannot get updated information about Tori. I've been told that it is not possible. My understanding is that the only way to find out about Tori is for a family to show up on the doorstep of the institution with a referral. Wow. Who is going to do that? Who has that kind of faith?

That is why I'm upping the ante on Tori's fundraiser. I was to afraid to set a goal when I first started. Afraid to hope. I can't be afraid now. I have to tell you that Tori must absolutely have a fully funded grant. That's $20,000. (Since I chickened out when I set up the chip-in, it won't reflect my goal even though I tried to change it.)

It can be done. $5 or $10 at a time even!

It's bad enough that we lost Anne Marie. I don't want to lose Tori, too.