Tube Concerns

I am really getting discouraged with this whole tube feeding thing. You'd think after 3 months, I'd be used to it, but that is not the case. It just feels like she's never going to eat. I'm going to be tube feeding her until she's 30... Or at least until she can do it herself, I suppose. We always offer her the bottle before each feeding but 99% of the time, she won't take anything. The other 1% of the time, she'll take like 5 - 10 mLs.

Right now my main concern is with her pulling out her tube. We always have to keep her hands in mittens or socks unless we're really watching her closely. The tube has been bothering her more lately. In the past, she's pulled it out a little, but I was always able to maneuver it back in. But this past weekend, she was in her swing with some thin mittens on and she pulled it out completely and it seems now whenever she has her mittens off, she puts her finger up under her tube and tries to get it out.

I can't watch her every single second, so she wears socks on her hands. The drawback to this, is that I feel it is inhibiting her development (grasping, learning to use her hands, developing her sense of touch, etc.) I'm at a loss... It takes 2 people to change her tube out, so I don't know what I'd do if she took it out when I was alone with her. And it's not like we have an endless supply of them. They aren't cheap.

I'm just glad we are seeing a geneticist/pediatrician on Monday at the Weisman Center. He is supposed to specialize in children with disabilities. Hopefully he can help. Meanwhile, if there is anyone out there who is reading this, who has had similiar issues, please let me know.

Here is a pic of Caydence after pulling out her tube this past Sunday night. She was quite content and proud of herself!



The next picture is of Caydence, after we put the tube back in... Not so happy...


On a brighter note, our team "Caring 4 Caydence" has all together raised $1,395.00 for the Madison Area Down Syndrome Society's Step UP for Down Syndrome Walk next month. And we still have until October 10th! I'd like to thank all the people who have donated so far! There are SO many of you! It really means a lot to us, so THANK YOU!