Tuesday, August 31, 2010


Well, I have a ton of 'em. Most significantly are my knee from a canoeing incident and Jake throwing me into a water jump, a pretty good one from the c-section, several oven burns (I'm not sure why I forget it's hot), and two really great ones from the external fixater I had to hold my wrist together. They really don't bother me at all, although once a three year old told me I could cover them up with makeup if I wanted. Thanks. But I have to say, each scar was completely self inflicted, if indirectly. Probably drinking while floating down a river and deciding to 'try the rapids' wasn't super smart. Clearly burning yourself repeatedly on the oven is something only I can manage. You have to imagine that if you ride racehorses for a few years or try jumping horses off of embankments into water, you might come away with a scar or two. And as for the c-section, well, I did get pregnant on purpose, despite the jokes.
But I was looking at James the other day (well, like, every day, but particularly the other day) and I looked at the scars on his arm from the PICC line, and what is going to be a doozey on his stomach someday. It made me a little sad that he'll always carry those scars; I'm not even sure why it made me a little sad, but it just did. I guess cause he didn't have a choice in any of it, and certainly didn't have any fun in the process! I did meet a little girl at the hospital who had cystic fibrosis and she showed me her gtube scar. It totally looked like a bullet scar (or what I suppose one would look like in real life). Her mom told me that when she got it taken out, she walked up to a stranger in the park, lifted her shirt and said, "My daddy SHOT me!!" HA! Think of something to say to that! As long as we all keep our sense of humor...

Saturday, August 14, 2010

You're in a chair. In the sky!!

It's very easy to forget that one month ago, James ate nothing. As in...nothing. Now he eats all sorts of purees, including some pasta with bolognese sauce, chicken dumpling soup, and lots of ice cream. He chooses to munch on Cheerios and cookies. Yet I catch myself getting frustrated sometimes (lots of times) when James gets distracted or takes the world's smallest bites (ever). I mean honestly, he only opens his lips. It takes over a half hour to finish a container of yogurt and could take hours to finish 4 ounces of something new (usually if he eats an ounce or so of something new, I'm pretty happy---and it's not cause he refuses it, it's just that it takes FOREVER). It is still enjoyable and rewarding because he is actually eating. And I spent almost a year making food 3x a day that maybe got poked by a finger. So I love making him something new or making homemade ice cream or adding butter to something and actually feeding it to him. But still, sometimes I do want to scream, "OPEN YOUR MOUTH!" lol It wouldn't work, so I just scream in my head. But then remember----how can I possibly get frustrated with this kid?? He. Is. Eating. And I know I wish it was over, but it's not. And it's not going to be for, you know, a while. So I have to take what comes and enjoy what is happening right now, and remember all those other crappy months and think about how great this one was!
The following link was posted by my cousin a while back. There used to be a better version, but I can't find it. Still, it was recently brought back to my attention and it does put things in perspective!

Wednesday, August 4, 2010

an eclectic post to catch up

Probably no one is even following this anymore, since I blog so infrequently. But it's not that I don't think about it, I just feel mildly guilty (mildly) for letting Mickey Mouse babysit so I can get on the computer. Especially since Mickey Mouse also feeds my child. But really, he's pretty good.
To catch up though, James is doing very well. He is still eating yogurt and pudding, but has started to eat some sweet potatoes with tons of butter and some other Tyler Florence baby foods. He is no longer making awful faces and shuddering when they go in his mouth, so that's great, but it could take hours to get 4 ounces of something new in him. He takes the smallest bites ever. I have discovered the straw bowl so once ice cream melts or yogurt and pudding turns to liquid (which happens in approximately 15 min, just so you know), he can drink through the straw. I think he gets a kick out of it. I know lots of other bystanders do. I carry it with me to restaurants. I don't know why it works better than a cup, it just does. Maybe because he can see exactly what it is and it makes him feel more comfortable.
We had a checkup with the GI doctors 2 weeks ago and it went really well. He is regaining some of the weight he lost at KCRC and the subsequent illness and looks great. He was showing off like crazy. While we were there we went to visit our old nurses. It's an interesting experience to do that. I had a moment where I thought, 'these people see so many kids come through here, I'll kind of feel like a dork if they don't remember us very well.' Non issue. A few of our favorites were there (sadly not all of them) and we spent a long time chatting and catching up. They were pretty happy to see James looking so good and talking about everything, of course. :) I spent most of the time talking to Donna, who was one of our most regular nurses. She's very good at her job and fun to be around. She was saying how they love when kids come back to visit and stay in touch, but some people never want to walk back into that area of the hospital. But you know, I spent every day and night with these people for a loooooong time. I'm sure I drove them crazy at times, but you do form a bond that is very special. I will always be so grateful to each and every person that helped with James and taught me how to care for him. Donna said it right when she said, "You just can't imagine what it is like to have such a sick child until it happens." Even when you are thankful for a healthy kid, you have no idea just HOW thankful until you feel like you could lose them or have to watch them go through all that pain.

When we were at KCRC, the second week we spent time with a mother and a 4 yr old girl who had a heart transplant. Not heart surgery, A. Heart. Transplant. Wow. Talk about putting things in perspective. She was born without working muscles in her left ventricle. I think the actual transplant happened about 6-9 months ago, maybe shorter time than that. So these parents (who have 2 older kids), spent 3 years in and out of hospitals, basically buying time until Lauren was old enough and there was a donor. Amazing. And she was amazing. You'd never know.
As a final thought, I have to post that I have the most amazing husband ever, and incredible friends. The week after we got back from KCRC, my friend Annie and I decided to have a much needed girls night (mostly, a night with no little boy, but our husbands had to babysit to make that happen, so it became girls night). Annie's pretty smart, and she had the very inspired idea to see if the Inn at Little Washington could take us. Well, they squeezed us in last minute and we went for the most fabulous dinner eeeevvveeerrrr and when asked, several times, what the special occasion was....we got to say, "Um, girl's night!" While we were sipping champagne and nibbling (shoveling) caviar and fois gras, our sneaky husbands were planning an incredible double birthday bash for the next weekend. We spent our birthday (my actual, Annie's a few days later) laying by the pool while the boys set up. Then the local, organic caterers came in with all their homegrown food that I ate at least four plates of, plus had it for breakfast and dinner the next day. Then the 2 cakes came out, the case of champagne (yay!), and very cool birthday wine glasses that never seemed to empty, and votive candles hanging from the trees and fenceline. It has to be the best birthday I've ever had, certainly as an adult! Honestly, I just posted that to brag. I'll put some pictures up later so you can be really REALLY jealous!