Boy, I just find myself lying awake at night thinking, I just don't take Cary to enough doctors. Where else can I take her? What else can I do to my child?
I sometimes think that I live at VCU/MCV. I mean, the guys at Au Bon Pan and Einstein's Bagel know me and Cary. They even know Marvin. I am starting to recognize my favorite valet person. The one who actually helps me! I look for her! Geez, it feels pretty pathetic at times.
But in a way it is good. They know me. They know Cary's story. They cheer me on and cheer me up.
So after Cary's hearing results we went to the ENT. That was a doctor I had hoped not to have to see. The guy was nice, looked in her ears and proclaimed no fluid or infections. We chatted about how kids are and what an awful season this was. I then handed him the information I had gotten from the VSDB. I had some pretty cool charts and a nice e-mail from the person who did the testing. The doctor reads the info and the smiling stops. He looks concerned. He immediately leaves the room to get the audiologist.
Not only does the audiologist come back, but so does the doctor and another doctor. They are nice and start asking lots of questions and frowning at the chart. I have found that frowning is not a good thing. So I start plowing head on. I ask for more testing. I ask for options. Then in a tiny voice I ask, "Will my baby be O.K.?" No one can answer that. The room is silent.
Funny how she has a shunt which her neurosurgeon delights in telling me that it will fail, I have a neurologist who tells me my kid may have problems walking and talking, opthomologists who tell me that vision will be an issue, and a GI doctor who put my child on pediasure because of thriving issues, an endocrinologist who has me watching pee pee diapers like a hawk, and this is what unglued me.
They are reassuring and tell me that we are going to try testing and a ABR. This link tells you a bit about ABR testing. It is not the best link I found, but simple. Trust me when I say my child will not be that happy and relaxed as the one in the picture. We go on the 25th. Since they do not want to sedate Cary, due to all her complications, I have to plan on spending the day there and hope she cooperates and takes a nap. Hahaha. I told them she stayed up all night at the seizure watch. Good luck on that one.
They also told me that we may be looking at hearing aids. I am not thrilled about it, but if that is what she needs to hear then I will roll with it. I have been assured that I have a wonderful team waiting for us. I can honestly say I am tired of teams. I sometimes wish that we only had a pediatrician and that I could wave my wand and make this all go away. But if it all went away Cary would go with it and I don't want that. She is resilient and brave. I will just have to suck it up and follow her lead.
I have a lot more I could blog about. We are finally getting somewhere in dumping our vision person, Cary is having all sorts of new unfun GI issues, and I am getting a medical helper. Wow! My life is never dull. But right now we are having rare "normal" moments and I want to enjoy them. Lately, they have been far and few between. Its a crazy life, but at the end of the day, I wouldn't have it any other way.