I can't believe how quickly the time goes by. We drove home from San Diego on Father's Day. Grace behaved pretty well considering how crowded we were in the car. We had a fun-filled week at the beach and with family while in Oceanside. It was warm and sunny which is always a plus for June.
Tuesday, June 20th, Dave and I took her to Richfield (1 hour away) to meet with the Neurologist. There are a group of doctors fly to rural areas within the state as part of an outreach program.
When we got there, we were informed that her doctor didn't come (they forgot to call us and let us know). I was frustrated (in a nice way) because had I know he wasn't coming, I wouldn't have waited a week to talk to tell him Grace is still having seizures. The Physician's Assistant finally called me back and they increased her dose to 375mg Trileptal 2 times a day. I will also take Grace to see the PA on June 29th.
While in Richfield, we spent a couple hours speaking with a Public Health Department Psychologist who thinks Grace isn't diagnosed entirely correct. He thinks that the ADHD is a misdiagnosis and wants to repeat some of the tests. I think retesting is common because most professionals don't want to really on someone else's test results. So we will probably follow-up with more testing with him.
In the meantime, we will contact the school regarding Special Ed and an IAP. The crazy thing about seeing these docs is most appear to be focused on making a diagnosis and can't give me concrete answers as to what the follow-up plan should be. I'm realizing that the follow-up plan is whatever I want it to be and the professionals will try and help us get there.
I went to girls' camp last Wed thru Saturday. Dave said Grace had a couple seizures during the night on a couple occasions. He said when she doesn't nap as well, she tends to have a seizure that evening. One time in San Diego, Grace was able to tell me she was going to have one. She later explained that the room spins and her vision goes blurry. It was reassuring to know that she can sense them if she's awake.
Since I've been home, she hasn't had any that I've noticed. We have a doctor's appointment in Salt Lake on Thursday. Hopefully we can get some answers regarding a future care plan/action plan for Grace. Till then, ttfn.
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4 comments:
Was wondering how Grace (and you) are doing. Hope no news is good news.
Thanks for your concern Eve. We are all happy she is doing well.
Thanks, Char. I'll stop bugging you. :)
Charlene, I have read this far and I have to say that we need you SOOO much. Meaning me, we. I appreciate you so much and miss you. I am sorry for all you have been through, hope this is theraputic and that you feel the love we have for you all, for Grace. I have a beautiful picture of her, would love to pass it along. Love you.
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