There are a few things I need to point out in this photo.
1. Lively is getting huge! He's heavy as can be, and is in size 18-24 month clothes.
2. He's still smiling. In case you can't read his expression, he's cracking up in this picture.
3. He has red hair!
4. He's wearing a very special handmade sweater that our friend Aimee Fink made for him. Yes, he's wearing his special sweater over his pajamas, but isn't it beautiful? Aimee and her family live in Denver, which sadly means we don't see them often, but since I'm on the subject, whenever Pete or I break a dish, piece of pottery, etc, we send it to Aimee and she smashes it up a little more and makes it into a gorgeous mosaic. You can see lots of examples of what she can do here.
Prior to modeling his sweater, Lively was wearing a complementary Detroit hoodie, so that he and Annie looked like the cutest little match-y brother and sister ever. Sadly, I missed that photo-op. However, due to g-tube leakage, Lively got to model other wardrobe items. Annie, however, kept hers on, as evidenced here:
She looked at her crooked pigtails in the mirror about 10 times. I finally asked her, what do you think you look like with your hair up like that? Her answer: a moose.
Tonight when she was taking a bath we were painting with bath paints (basically liquid soap that comes in red, yellow, and blue), and she commanded me to paint a picture on her hand. What should I paint? I asked. A whale. A whale? Yes, but a small one, because a big one wouldn't fit on my hand.
OK, so Lively's tube is leaking. He's doing very well with tolerating all his feeds into the stomach part of his tube -- we haven't used the intestinal part in weeks. But several times a day he leaks large amounts of fluid around the tube, soaking himself, his clothes, and usually me. Of course, it's stomach contents coming out, so it's very irritating to his skin. We've been really careful to keep the area as dry as we can, and I've been using vaseline as a barrier so that when stuff leaks out, it doesn't burn him as much, but it's still obviously very uncomfortable. I'm hoping to be able to get his tube changed this week (hopefully just in the office, and maybe even exchanged for a button which wouldn't stick out so obviously) but his surgeon has been gone for the last week and doesn't see any patients in the office for 2 more weeks, so we'll see.
KayTar has had a BARD g-button for almost two years and we love it. She's had it swapped put twice in surgery...once because she outgrew her initial sizing, once because the stopper broke off inside and we had to get it swapped urgently. That second time was the only time we've seen significant leakage, because the stopper was lodged in the valve so it was continually open to drain. Most people do Mic-key Buttons, but we
ReplyDeletereally like the BARD. The down side is that swapping should be done in the OR under general, but the pro is that it doesn't have to be swapped as often as a Mic-Key. The BARD is super low profile, too.
What a cutie... especially in that handsome sweater! Katie, I think you are amazing and wonderful and SO incredibly strong for doing what you do for your little boy. I think about you constantly and how you must be coping. Your children are beautiful, and so SO lucky to have you as their mother. Thanks for the artsy fartsy compliments! All my love to you from Colorado, Aimee (p.s. Hopefully we'll see you in MI this coming summer.)
ReplyDeleteWe love this posting and these precious pictures. We are so proud of you and Pete. See you soon. Love, M & D
ReplyDeleteI'm glad to see these new pictures. Just talked to Grandmommy who is really looking forward to her visit with you this weekend. She said she thought Lively is going to get the tube with a button--if true, this sounds much better.
ReplyDeleteLove,
Sara and Sam