The other day we had a doctor’s appointment Jordan’s Neurologist. First we talked about the problem with her eyes. He like everyone else thinks there might be some connection between her eyes and her seizures although all of her blood work comes back normal. He called her a strange kid, which she didn’t seem to mind.
She has a few questions for him and the biggest one was swimming. I think she has wanted to swim from the moment she could talk. She loves being in the water and loves pushing her limits even more. We have been letting her swim in the back yard for a few days now so I was really interested to see what the doctor would say. He told her she could swim, although not very long under water, which made me happy because I am constantly telling her to not swim underwater. After talking some more she said “Can I dive?” and he said “No” Another point for mom and the doctor being on the same page. She asked about riding a bike, which she can do as long as we watch her like a hawk.
The appointment went well and he decided we need to get her off another medication. Over the next 2 months she will be coming off the Topamax. Keeping our fingers crossed that everything will go as well as the last time. He also doesn’t want to see her for 6 months. While I am happy about this because it means she is getting better I am still a little scared. I know he is just a phone call or email away and it still doesn’t make me feel better. It is like when we left the PICU. You become so comfortable with the doctors and the security they give you. Moving on means something good yet I still am afraid.
She has gone 6 months without any seizures and every day we get away from the seizure the better off she is. She is so excited for school to be almost over and she can’t wait for summer to really begin. There will be lots of time swimming in the pool, riding our bikes and just having fun. We go back to Boston for her eyes in a week. Maybe the blood work they did will have some answers although at this point I don’t know that I care. She is happy, healthy, kind and funny. She makes me laugh, cry and sometimes even scream yet I wouldn’t trade it for anything. Enjoy your summer and we will keep you posted.
