I don't want to be a grown up today

I am taking Sophie Kate downtown to Children's Hospital today for a swallow study. They will give her different consistencies and see how she does swallowing them by watching what happens on xray. She had one done last April which she failed miserably and we were subsequently told not to give her anything by mouth...so basically we haven't. But what's had me frustrated for about the past week is that no one has done anything to try to help her with that over the past year and now they just want to repeat another swallow study.

I just don't think it's fair to have her go in and try to swallow when no one has been trying to help her and we have been seeking help for this, it just supposedly hasn't been "our turn" yet...so frustrating. I guess I am not surprised by the way I feel this morning, it's just that we have had such a good run for so long and I really don't want to do this today or any other day. I am trying to remain calm and I keep telling myself that no matter what happens today it isn't going to change who my girl is.

We are in a good place right now and I can already feel the tears welling up in my eyes. Even if I go in expecting to hear what I heard last April it will still hurt when I hear it again and I will still cry, you just never get used to this. I don't want to be a "grown up" today.

Also tomorrow is Jacob's second ear surgery, they will be placing a titanium bone in his ear. We keep telling him that he is getting a bionic ear...he thinks it's pretty cool.

I'll update when I can, thanks for your prayers and your support.