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.
Monday, June 26, 2006
Monday, June 12, 2006
San Diego Vacation
Grace has been on her therapeutic dose of Trileptal for a little over 2 weeks now. We have a check-up in one week- Tues, June 20th. She has been in Oceanside since June 2nd and my mom said she has had some small seizures, mostly in the first few days she was there. She thought she hadn't had any seizures in the last few days.
I came in town yesterday. It has been 10 days since the kids left with my mom. I slept with Grace last night. She had two short seizures during the night and then she had one at breakfast. She hasn't had one during the day since about mid-May. I was on the couch but Christina noticed she was staring up at the ceiling. (We came to Chrissy's last night). I bolted to the table and caught her right when she started falling out of her chair.
It seems like she has seizures when she's done a lot during the day- lots of activities or stimulation. She took a nap yesterday, but I tried to take a nap with her today and I don't think she ever went to sleep. It also took me 45 minutes to get her to sleep tonight even though she wore herself out swimming this afternoon. I've decided that kids are never as cooperative with parents, especially when they've been "abandoned" for 10 days. I was pretty sure she would have one tonight which she just did. It was pretty short. I will have to continue keeping track so I can give the doctor feedback next week.
While writing this, I just heard a loud bang. Grace must have hit her head on the bunk bed by either having a seizure or something. After I put her back to bed, she had another little seizure. Now she's all smiley like she sometimes gets after seizures. This could be a long night.
I came in town yesterday. It has been 10 days since the kids left with my mom. I slept with Grace last night. She had two short seizures during the night and then she had one at breakfast. She hasn't had one during the day since about mid-May. I was on the couch but Christina noticed she was staring up at the ceiling. (We came to Chrissy's last night). I bolted to the table and caught her right when she started falling out of her chair.
It seems like she has seizures when she's done a lot during the day- lots of activities or stimulation. She took a nap yesterday, but I tried to take a nap with her today and I don't think she ever went to sleep. It also took me 45 minutes to get her to sleep tonight even though she wore herself out swimming this afternoon. I've decided that kids are never as cooperative with parents, especially when they've been "abandoned" for 10 days. I was pretty sure she would have one tonight which she just did. It was pretty short. I will have to continue keeping track so I can give the doctor feedback next week.
While writing this, I just heard a loud bang. Grace must have hit her head on the bunk bed by either having a seizure or something. After I put her back to bed, she had another little seizure. Now she's all smiley like she sometimes gets after seizures. This could be a long night.
Grace's Dilantin Rash Photos
Hospital Photo of Grace
May 4, Thursday, 2006. This was the only picture Grace would let me take of her while we were in the hospital. She is in her favorite wheelchair and she wanted to take those PJs home with her.
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