normal

I am part of a SCID email group (yes there is such a thing). People put questions on there, other people answer. Sometimes I read them, usually I don't. A question came up this week about if anyone had oral aversion with their child and any suggestions. Well, I thought, I can understand this problem, so I email out and told them Brooke's issues, her button, nissen, therapies, feeding clinic wait list and what she will eat. What I did not know is what I would gain from this question or my statements. I found out Brooke is normal, or normal for a SCIDS patient. There are so many SCIDS kids out there with undiagnosed feeding issues and tube feedings. I guess they aren't undiagnosed, its SCIDS.
One particular woman emailed, she has SCIDS herself. She called it a sensory disorder and she still struggles with feeding trouble. Textures and consistency's are very difficult to overcome. She has to physically tell herself at times, not to gag on certain foods. She knows they won't hurt her but the textures are over powering. She also said if she gets congested she about has panic attacks at times. The feeling of the mucous makes her anxious.

She remembers when she was 4, everyone just called her a picky eater and at times she wouldn't eat because she just couldn't.
I feel like my eyes have been opened. I feel like maybe I caught a little glimpse of what Brooke is feeling. That's all Steve and I want is to understand what she is going through so we can help her and not do something that will be an obstacle. My faith is renewed and we will have patience and wait on Him. Someday Brooke will eat her birthday cake. Until then, Macy and I will enjoy it :)

Oh boy, Birthday Presents!!! 2 very happy ladies!