A New Tube For Tenn

Tennyson had three appointments up at UNC in Chapel Hill today. Three appointments mean that a) my child cried during all three of those appointments and b) we are both wiped out. It’s an hour and forty five minute drive each way and she had feeding and speech therapy before we left the house this morning. My girl is a trooper.

One of her appointments was to have them check out her g-tube. Tennyson has gained some weight since the g-tube was placed and she has been battling the dreaded granulation tissue I swore my child would never get. Granulation is when the skin is trying to close up the hole (aka: stoma) in her stomach…it’s literally like her body is growing new skin and it looks terrible. It makes the hole look red and irritated. That’s not how we roll in this house. We keep things clean – really clean.

I didn’t know that friction between the tube and her skin can promote granulation tissue growth. I learned that today when they took a look at her tube and said she needed a bigger size. She needed more space here:

Hopefully, having a larger tube with less friction will be more comfortable for her and make the granulation tissue disappear.

Also, Tennyson is making some exciting progress! Yesterday she had her most vocal day ever and said, "mama" all day long! She has said it before, but yesterday she was saying it TO ME. When I would tell her say mama she would yell, "MA! MA!" It was so cool!

She has been giggling at things she sees on T.V., she seems more awake and alert, she is holding her head up better, she is babbling more each day, and her muscle tone is better (less spastic - more relaxed). She is doing really well. I'll get another video up soon so you can see it.

We are going to double her dose of folinic acid and add a pure form of vitamin B6 to help it absorb better! Exciting times around here!

tennsense@gmail.com

Amy