You Are Not Going To Believe This!!!!
What a day!!! I have been smiling since about 5pm tonight because I am SO happy that someone finally is listening to me. Someone finally agrees with me. Someone thinks what I do. And this someone said it before I said what I thought! What you ask?
Well this morning the genetics fellow came in to talk to me. She took the full history of my health, my family, J and his family. Then we went onto A from pregnancy until now. She was very impressed about how much I knew about his NICU stay, what infections he had, the dates and just all of the issues in general. She then told me that she would be speaking to the genetics doctor and they would come back.
At noon daddy went in with A to have his ph probe placed. It was not fun at all but it will be coming out tomorrow afternoon and I cannot wait to see the results!!! The doctors are positive that they won’t see ANY reflux where I think different.
Anyhow the genetics doctor came in along with the fellow I spoke to and a resident. He was very caring and concerned from the minute he walked in. He told me that he had heard all about me and what a wonderful mother I was. Yep, I try to be I told him.
We then laid A on the bed and I took his clothes off. Within about thirty seconds of him looking at him he said “this kid doesn’t have cerebral palsy.” Hmmm wasn’t it not too long ago I was telling everyone how his CP just isn’t typical. How he just doesn’t present how he should. I was blown away. I then told him that the doctor that diagnosed him was the only one that would say CP. He said “of course…you have a former 24weeker that isn’t meeting milestones and you label them CP…it is the easiest thing for them to do.” WOW!!!!!!
He then told me that he thought of course that A had some effects from prematurity but said that with what he was seeing he didn’t think it had anything to do with it. OMG!!!! Have I not been saying for months and months that I am so tired of docs blaming everything on his prematurity?! His CP?! I thought I was going to burst into tears!!!!!
He also is very concerned about WHY A is deaf. He said that it isn’t normal to have a child come in after their first birthday and find out that they are profoundly deaf when in the past they had passed two hearing screens.
I told him that the day we came the docs asked me what I thought was wrong. I said reflux, airway and something no one has figured out yet. He looked at me and said “I think you are right mom. You are a great mother and I am so glad that you have fought how you have to try and get answers. I can’t promise you anything but we will do our best. A doesn’t have any features that make me think of where I can start but we will start somewhere. This must be so hard on you.” He then told me that they are going to involve metabolics as well to start with a workup on him.
I cannot even tell you how good this feels to hear what I heard today. To have someone tell me that they think something else is going on without me saying it first. I cannot wait until I see the complex care doctor tomorrow. Wonder what she will have to say?!??!?!?!??!?!?? Genetics was just coming because I bugged and bugged. She didn’t hesitate to tell us over and over that it would just be genetic counselling and that they probably would not end up doing anything more.
On the other side of it I am very scared. IF A ended up having something genetic that most likely means that the chance of J and I having another child is slim. I long for the day I can get pregnant again….have a big belly….enjoy every minute of being pregnant and then have a big fat term baby. This brings me to tears just knowing that maybe, just maybe I will never get to experience it.
Mothers know best…..that’s all I know. When are MOST docs going to learn this?