Sorry, we've just been so busy, and haven't updated. Mallorie has been recovering really well from her RSV adventure. Except that she still "oinks" (her dad's term) every few days for a little while, you'd almost not know she was sick. The oinking is the funny noise she makes when her nasal passages get swollen and she still insists on breathing through them instead of her mouth.
She also has been taking a solid feeding in her tube once a day, meaning a mixture of Gerber turkey-rice-veggies, fruit, baby cereal, some Udo's oil, and milk. Oh, and egg yolk, which apparently doesn't cause the violent retching/vomiting that whole egg did in the past. Matthew has been mixing up her mixtures every day, and spends time creating plans and calculating calories she'll be getting each day, using this book.
I also recently found a support group (a yahoo group) where I've learned so much mostly by quietly reading the emails among members, and even been able to connect with a couple parents who have given me encouragement and advice. One of the things that I found most comforting was reading emails where other parents talked about how hard it is to just make the change, to start adding solids to their children's diets. It was wonderful just to know I wasn't alone in having trouble with the transition. Some days, anything extra - like making a change in routine - just feels like too much.
And I also learned from this group that the Mic-Key button instruction pamphlet actually mentions giving blenderized foods through the button! (I checked to make sure, and sure enough, it was there.) So much for the warnings we were given to never, ever put real foods through the tube. I'm pretty sure I read something about blenderized food in the Mini-One paperwork, too. The professionals will catch up with what families are apparently already doing, some day. (I still chuckle when I put Mic-Key and Mini-One in the same paragraph.)
Mallorie's speech therapist, has also been working overtime, helping us create/adapt toys that encourage Mal to use her arms and get her reaching and involved in active play, as opposed to just passively watching things go on around her. I want to get Becca's permission before showing pictures of the latest thing she made (which is another way of stalling, because I need to get to bed, not try to figure out how to download pictures from the camera, tonight).
Oh, and I have to post soon about the neat chair a mom I know told me about. Later.
The Trisomy 18 Connection
1 month ago