First I need to catch up again. A few days ago, on Sunday, Jay turned one month! I can't believe it's been a month already. Exactly one week before that, it was one full year that Dillon has been home from the NICU. This one is easier to believe, it has been a long year, so looking back it does in deed feel like a full year.
Yesterday Dillon had three appointments in Philly. His hearing teacher's 22 year old daughter went with me. I couldn't find anyone so when she volunteered her daughter I took her up on it. It was very nice of this girl, who had never met me before, to be at my house at 6:30am and not leave my house until 6pm! Thank you very much (if you ever read this)!
Appointment 1: Feeding Team
Summary: Waste of time
Explanation: We got there and the team wanted to know why we were there to see them. Okay, they have Dillon's records in their hands - why on earth do they feel the need to actual make me say "uh DUH! because he can't suck or swallow!" But anyways...the speech therapist confirmed with a stethoscope that she did hear a SWALLOW! Praise the Lord! However, they do not know if he swallowed to his stomach or if it went into his lungs. For reasons I do not understand, and have a call into them today to make them explain it to me again, they will not do the saliva gram to see where he is swallowing to. This makes me so mad because if we knew it went to his stomach we could start to give him food, if it is going to his lungs then we need to know to keep a better eye on him to make sure he doesn't get pneumonia. They did suggest a car seat bed since Dillon is having a hard time in the upright position. They want him to increase his food because he's underweight. Really?!?! Dillon is under weight?!? I never would have guessed! So they want me to increase him from 700ml to 800ml of food a day slowly...in two days! Okay people, that is not slow. One of the doctors asked me, "Has anyone ever talked to you about a trachea?" WHAT IN THE WORLD IS WRONG WITH THIS DOCTOR??? Why would she bring that up, he is doing great! Yes he still labors to breath a little, but not enough for a trachea, she needs to stick with doing her job of "feeding team" (because she was having trouble with doing that) and leave that up to the lung docs - who she knows I am seeing next week. I was told their only suggestion was to see GI but oh wait, they know I am already seeing them next week as well. When asked, I was offered NO suggestions on how to increase the frequency or effectiveness of Dillon's swallows. In fact, they went as far the opposite direction to tell me that the vibration I am doing with him has absolutely no proof of it working, but to "continue it anyways because he is so severely injured and not getting sensory things, that who knows, maybe it will do something for him." What a waste of my time, they gave me no new ideas, told me what I am doing is ineffective, and told me they aren't going to help me determine if I can give him anything by mouth.
Appointment 2: Urology
Explanation: Everything checked out fine, the doctor just wants to follow up in a year.
Appointment 3: Ophthalmology
Summary: Why do I even bother?
Explanation: First of all, we didn't even get seen for an hour and a half after my appointment time. I tell the docs all about Dillon's vision, that he only tracked once and that we sometimes can get some reaction to lights (sometimes he seems to "find" the light with his eyes). So what does the doctor do? She pulls out a light blue beanie baby bear (Keep in mind with CVI they see red and orange better than any other color) and puts it in front of his face. At this point, I was either going to yell, be very rude, or cry...so I remained silent. But I really wonder where these people went to school. They didn't even give Dillon a far chance to show them what he can do. They should have used a colored flashing light, or at the VERY least a black and white and red object. I asked about a therapy technique I have read about in "What to do about your brain-injured child" (I'll explain that in another post) and the other doctor said "Don't get your hopes up, there's no proof that it works." Not according to the book and the research in it. He also told me that he doesn't need to see Dillon for a year. Why? I asked. Because "There isn't going to be any change in him, so I don't need to see him." He had just finished telling me that since Dillon's vision wasn't better by a year it isn't going to be. Well thanks a lot for writing off my child, Doc, but if it's alright with you we aren't going to! Oh, and he also informed me that since Dillon's cheeks are broader than his skull it shows how badly hurt he is, another reason why we aren't going to see any improvements.
So, how's that for a day, for you?