Saturday, January 30, 2010
Farewell for now, Flagyl
Sunday, January 24, 2010
Getting back on track
Our friend Flagyl seems to be doing its thing. Blaise's stool is looking more normal, her appetite has improved, she hasn't vomited and her breath is better (bad breath goes hand-in-hand with bacterial overgrowth). She's also been in a great mood the last day or two. So getting back to normal.
In fun developmental stuff, Blaise has begun pointing to things she wants or things she finds interesting. We've been hearing amazingly long babbles, which stop as soon as we get out the camera. Her self-feeding is going well. She eats all of her peas before anything else. I thought she was eating her carrots today, too, but then I realized that she had just been selectively feeding the carrots to me. She has a new-found love for her Madeline doll. I guess she decided that small, tough girls with scars on their bellies have to stick together. Either that or she likes chewing on Madeline's hat.
Yes, yes. More pictures soon. I promise.
Thursday, January 21, 2010
Well, a planned clinic visit would be no fun
Here's what was on the agenda: the leak at her g-tube site, advancing her feeding and the nightly vomiting episodes. What nightly vomiting episodes? Almost every night for about a week and a half right around bedtime, Blaise has vomited significantly. She's fine the rest of the time, although her reflux has seemed worse, her "output" is a little runny and she loses interest in food as the day goes on. No fever, no vomiting other times of the day. It's happened before we lay her down for the night and after, before her omeprozole and after, when she eats a lot during the day and when she eats a more moderate amount. We haven't introduced any new foods. Ooo, another short gut mystery, another short notice clinic visit.
The plan: we're going to replace her button with a bigger size to help with the leaking. The bigger size has to be special ordered, but it should be in next week. We're going to hold off on anything interesting with feeds until we can get this runny stool/vomiting business resolved. And to resolve that, we're going to start with the leading hypothesis: bacterial overgrowth presenting kind of weirdly. Blaise has a history of BO presenting weirdly (specifically, presenting as eosinophilic colitis, a typical allergic response), so we're hitting her with another round of Flagyl and crossing our fingers.
Aside from all that, Blaise is great (except right after she throws up, when she's pretty upset). "Good Night, Gorilla," a gift from our friend Cally during Mystery Hunt, might have replaced "That's not my Monster" as Blaise's favorite book. I was even convinced she was trying to say "gorilla" a couple of times today. We ran into her surgeon while we were waiting for our clinic appointment and he was absolutely delighted with how she looked. He hadn't seen her in nearly 7 months. She's come a very long way since then. Blaise blew a raspberry at him and then tried to take the art off the wall. His response: "That's what I like to see!" I'm not sure I get surgeons but Blaise thought it was funny. I spent the rest of the visit stopping her from taking paintings and things off the walls.
Sunday, January 17, 2010
Mysteries
In other mysteries, Blaise has been a little "off" the last few days. She's not been eating well and her sleep has been a bit disrupted. We're not sure what is up. She's occasionally congested/runny but has no fever. It might be a lingering cold and it might be the late-arriving side effects of her MMR and varicella vaccines, which can take up to two weeks to manifest. It could be that our schedules have been somewhat disrupted the last few days. And it could also be that she's becoming a toddler.
*I have, in the past, been asked what a team wins when it wins the Mystery Hunt. The answer is honor and glory among a very small subculture and the privilege/penalty of writing the next Mystery Hunt.
Saturday, January 9, 2010
Food adventures continue
This morning we hosted a very important baby summit, where Blaise and her friends Auden and Oliver hashed through the major issues of the day. The activity-table discussion was interrupted by the hotly contested issue of who got to play with Ollie's helicopter rattle. Talks will resume shortly, but the international oversight committee declared that naps would be necessary before any real progress could be made.
Thursday, January 7, 2010
Chicken (in more ways than one)
Yesterday we sucked it up and tried baby food chicken. Blaise didn't particularly like the taste of it. Her therapist suggested mixing with applesauce to make it more palatable. I reminded her that this was Blaise and she amended her suggestion to be mixing it with peas. We might try that soon. But we're back to being cautious after a round of vomiting at bedtime last night, followed by a difficult-to-pass but still runny stool. Chicken is by far the most complex thing we've ever offered her and we knew we were likely to see some issues. We backed off for today and I'm waiting to talk with the short gut NP tomorrow about how to proceed.
In other fun news, Blaise has been having a bit of a leak around her g-button. We're not sure what's going on with it. We treated some granulation tissue around the site and changed out the button completely when it seemed like the balloon that keeps it in place was leaking. But the leak is still there. Some of it might be an older baby's natural curiosity, which has Blaise tugging at and wiggling the button. It might also just be a bad fit. We're hoping for a solution soon. This isn't a major issue at all, but it's kind of annoying to look down and realize that there's a big wet spot on Blaise's shirt again.
For her part, Blaise is babbling like crazy and has begun to respond to verbal cues for a lot of things, including "Soooo big!" (lifting her arms up), "give me a kiss" (with a kiss) and "Who's house? Blaise's house!" (a raise-the-roof gesture, a la Run DMC). She's doing a lot of social referencing with me and Ben about new things and trying to push boundaries with bedtime and naps. Her favorite pasttime is still pulling books off the shelves and paging through them, while ignoring her Christmas and birthday toys. Very strange, as neither Ben nor I are bookish in the least.
Monday, January 4, 2010
Saying goodbye to an old friend...
This is Blaise’s blog, but today I want to write about another member of our family.
Mia died at home, with Erin and I sitting with her and petting her. She had lost a great deal of weight in the last two weeks, most likely due to kidney disease. The past few days weren’t easy for her or for us, but mostly she just became weaker and weaker until she was ready to go. It’s easy to wish I had done more (and I do) but I also think Mia had a good life with us and had a relatively calm passing.
I won’t tell you that I thought of Mia as being like a kid. I didn’t think that before I actually had a kid and I still don’t think it’s an apt or a necessary analogy. The thing is, like I said, I didn’t know how to be a cat owner when I met Mia and she helped me work out that it doesn’t matter what you know or don’t know going in. You just do your best to have fun together, understand each other, and take good care of one another. I think that’s what Mia and I did, and we had a great time doing it. Though being a parent is much different than being a pet owner, Mia helped me figure out how to just jump into something big with both feet…something that helped a lot as I’ve spent the past year working out how to be Blaise’s dad. For my part, I hope Mia had more good days than bad, and went on her way knowing how much Erin and I loved her.
So here’s to a cat who had a lot of dignity, a lot of brains, and was immense fun to be around. I’ll miss you, Mia.
Sunday, January 3, 2010
New photos
Saturday, January 2, 2010
Birthday wrap-up
On her delicious dairy-free, egg-free, soy-free, frosting-free, fat-free birthday cake. I know, what's left, right? It was actually pretty good. I decided to risk wheat flour, so we didn't go fully allergen-free, but no apparent problems so far. (Huge thanks to Isa at the Post Punk Kitchen for answering my silly vegan baking question.) Blaise enjoyed it, both as a food and to rub in her hair.
Thanks to all of you for your comments, love and support over the last year. We never would have made it this far alone and it was wonderful to know how many people were cheering for our girl. One year down, 90-some to go!