Thursday, June 29, 2006


I thought we could use a fresh coat of paint around here. I liked the obnoxiousness of the old, green template, but this one just feels happy.

Tomorrow Susan's getting tubes put in her ears to mitigate the repeated ear infection situation. I hate taking the surgical route, but the constant ear and sinus infections were getting to be too much of a problem. The ear, nose and throat doctor described her ears as "just pitiful." How sad is that? She's probably had some pain and hearing loss going on for a while because of fluid built up in her inner ears, we just didn't know about it. Put that on my list of things to feel guilty for - it's about number 1003.

We've put off going to a feeding clinic because of the cost and time commitment this summer, and because she's making good progress on her own. She's drinking from a sippy cup and feeding herself smooth foods like pudding and yogurt. She only takes about an ounce or two at a time, but it's good progress. In August she's going to start going to school for six hour days, and I'm going to try letting her go without tube feeds at school and see how she does. If she starts to lose any weight we'll obviously have to work out at least one tube feeding while she's there, but I think she can handle it.

She has advanced to the status of toddler recently. It's very exciting. She still wants something to hold onto while she's walking, but the physical therapist has managed to trick her into taking as many as nine independent steps at a time. Woo hoo!


Nancy said...

Congratulation, she will amaze you.
I wish you all the best

DDM said...

Yaaaaay! Congratulations!
I just found you today. I wanted to say thank you for your description of your blog. I needed to read that someone else is on the same page that I am with regard to 'telling it like it really is' without the fluff people seem to expect of special needs parents. Yesterday I got hit with my first jerk commenter, slamming me for "whinning all the time" (not my spelling, but the commenter) and calling me "pathetic". Also there was something about how this commenter knows lots of special needs parents, and that they just deal with it.
It made me feel like crap because I let it.
Anyway. Thank you for your blog. I'm putting you in my bookmarks immediately.
Your daughter is beautiful!

Nola said...

Dang - you must have blocked the jerk's comment 'cause I couldn't find it on your blog. I was going to go leave hateful comments on her blog for being such a jerk. Oh my God - she KNOWS special needs parents? She's not one herself and has the gall to criticize you? The bitch must die.

DDM said...

Ha! Yes, the bitch must die. I wiped out the whole post related to this comment. BECAUSE, and you will LOVE THIS.....the bitch was my FRIEND. I had the comment traced and I found out it was a mutual friend of mine and another (now past tense) friend. The shit hit the fan on that whole mess. And no, she's not a parent of any kid let alone a special needs kid. And no blog, she was posting anonymously. Because she's a chickenshit. I had a whole lotta fun calling her names before I knew who it was. And then I really had fun. I left it up for awhile, but then she keeps coming back and leaving shitty anonymous comments that I refuse to publish. I have this vision of her getting all excited when she gets responses to her nastiness and now I refuse to be the vehicle through which she operates. Stop Feeding The Monster is my new mantra.