Our day has not been the best day, Kyle was scheduled for an appointment with the GI doctor which was good since he's been so sick lately, with the sickness comes the gagging and retching and coughing. So we packed up and went to see her...I'll say I love this dr..I do, really..she has worked so hard to keep Kyle comfortable and as happy as can be. It's not an easy job for her. Our appt started off with a weight loss, not good. When we went in to see her she was concerned about his overall health...she's worried that he's not strong enough for the intensity of Pittsburgh...this was like a slap in the face. We have to go to Pittsburgh, Kyle's pain level with his belly is not getting any better. He has been in pain for 4 years now...4 years...that's to long. I started to stress, how can we not go..we need the testing, the new dr's, the feeding clinic. I completely understood where she was coming from I just didn't want to hear it. So I came home and called Pittsburgh, I spoke to the head of the feeding clinic and she was actually amazing. She told me it was up to us but in her opinion the weight loss, sickness and belly pain is more of a reason for him to come. She felt that he needs this so much we need to *hope* that he can get past this current sickness and that we can keep him healthy enough to proceed. We get final word on the 14th of January but as of now I think we are going to continue ahead.
While we were at GI she mentioned that Kyle literally has the worst belly issues in the state...ouch, that hurt a little. I feel tired right now. I can't imagine how Kyle feels...it hasn't been the best day for any of us mentally...I think we all are feeling the struggle of having this "illness" for 4 years..I think we all are tired and worried. It's so constant, I feel like I'm always waiting for the other shoe to drop, what next...?? This kid is truly so amazing...it's hard to see him down right now. He's lived in pain for so long...
I'm posting a picture of the kids from the Boston Aquarium this summer...there's my girl always watching out for her brothers..