Monday, August 13, 2007

Oh Good Grief

I think the best part of the day today was...hmmm I seem to be coming up short on just what the best part of the day was here. The got going when I went outside to roll the trash can out to the curb and realized that Chey's scooter was missing, and I'm not sure because I need to talk to Todd, but it just seems like there is something else missing out there. Well what fun, there is a thief in the neighborhood. No time to waste this morning though had to get going with the errands of the day before getting on the road to Tucson. Middle school to pick up paper work that was supposed to be waiting for me in the office but wasn't, so had to wait 20 minutes to get that. Then off to the high school to fill out paper work for Paige and some meds that she needs during the school day, should have been easy to get done, just needed to go into the nurses office and let them make copies of doctors orders. Well instead of easy a 30 minute wait is what Chey and I got in the main reception office, and then another 20 minutes of getting the paper work done in the nurses office. I was really glad that we left the house at 0800 this morning, because we ended up getting on the highway heading towards Tucson with exactly an hour and thirty minutes to get there. I was just really happy that there wasn't any traffic delays on the way there, and we still got there 20 minutes early. (No I didn't speed, I set the cruise control!)

Oh and then the reason for the Tucson trip today. Seeing the doctor, the doctor that I just so very much love...NOT!! Today it hit me that just once I would really like to leave that office without having thoughts of causing great physical pain to that man. Just one time would be a wonderful thing really, I don't think it is asking for to much. Oh and the picture is of what the temperature in the car was when we were finally done with the hour plus appointment almost 2 hours in the office. It took the car what seemed like forever to cool down for the drive home.

Anyway, Chey's appointment, confusing as it was went basically well. We caught him up on the last four months, and talked about the couple of things that have gone on with Chey in the last week. In his usual manner he blew me off and told me that I was wrong about what I thought I was seeing, but hey I have gotten pretty used to that in the last year plus of dealing with him. There was another doctor in with him today though, and after describing him to the middle school nurse, I now know that it was the head of the clinic. He was doing evaluations of Chey's doctor, so I took the time to sit and talk with him about Chey and the things that were going on. After him consulting with Chey's doctor and voicing his opinions about her treatment, Chey's doctor agreed. Geez thanks! Today I saw Cheyenne's irritation grow with her doctor, I think even she is tired of his flip flopping about her treatment. She looked right at both of the doctors and told them that she wants off of the depakote. So come the 21st of this month we are going to lower her medication another 250mg, which will put her at 750mg daily. We will go with that as long as there are no issues between then and November 29th when we see the doctors again, and then take her down another 250mg, which will put her at 500mg. After that her next appointment will be in February of 2008, and she will be due for another 72 hour EEG and a MRI. The plan for right now is before the EEG in February we will probably drop her down to 250mg depakote. If there is going to be any issues with seizures we should see it sometime in the next couple of months is the basic thought. I understand why Chey brought it up today, and why she would love to be done not only with the medicine but with the whole doctor thing. She is just as tired of hearing one time that what is going on is seizures, and then very next appointment we are both treated like we are idiots that don't know what we are talking about. The good news is that after today with the other one there, he will be sitting in on all of Chey future appointments, but I'm thinking if all goes well with the lowering of the medicine here that come February it will be time to request change back to the doctor down here in Sierra Vista. He was very clear that he wouldn't have any issues taking charge of her care once she has been stabilized for a year. Well, we are at the year plus mark, and I think I have had just about enough of dealing with doctor OCD in Tucson.

So fingers are crossed for good things in the next couple of months here. I'm hoping for Cheyenne to get just what she wants here with getting off of the depakote. I will not lie though, the thought of taking this medicine all the way down scares me to no end. But come this February it has been three years since the onset of the Epilepsy, and I know for all of us we will through on heck of a huge party the day we hear that she is done with it.

I hope everyone has had a good start to the week. I'm sure that tomorrow will be a much better day.

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