... a seizure. I was at work for less than 5 minutes when I got the emergency call to go back to her school. I'm told it lasted about a minute and she started to turn blue. The nurse was obviously called and stayed with her until I got there. I can't say I'm shocked that she had a seizure - she has been fighting me with the meds for this last week something fierce. This morning when I dropped her off, she must have spit out half of her dose. It's been impossible lately to see exactly how much she is truly digesting. She's so over getting liquid meds 3 times a day, and I can honestly say that I'm so over having to give it to her.
When I picked her up, she appeared fine, coloring was great, just seemed a little tired which is typical. They said she ate some breakfast and was up and walking around before I got there. I had the choice to leave her at school but chose to take her home to get more meds in her, just in case. And, of course, I called her neurologist.
Dr. Mower put in a prescription for a tablet form of Keppra, which I think she will take much easier. The Lamictal she was on - before she developed the life threatening rash - was awesome. I could just plop it in her mouth, or in a spoonful of applesauce, and it was a done deal. The liquid stuff has been increasingly difficult.
Dr. Mower also put in a request for me to see a dietician to discuss the Ketogenic Diet, which I've been against since he first mentioned it to me. He's spoken to other neurologists about Raquel and her experiences, and they think this is something I should seriously consider pursuing. Sigh.
On a positive note, Brian, the nurse, took my generic Benadryl so all that is settled. He is a really great guy and I like him a lot. And I also like her teacher and the aides. Everyone seemed to handle the situation just fine.
Let's see what tomorrow brings, shall we?
Wednesday, August 24, 2011
Tuesday, August 23, 2011
Kindergarten!
I can't believe Raquel started kindergarten yesterday. She did good, had pretty much an okay day and seemed to adjust for the most part. They had some difficulty finding a chair for her to sit in - she kept sliding out of most of them - and the desks were way too high for her age group, so they had to make some adjustments. But I'm proud of her for handling her first day back to school after summer break as good as she did. Besides having unfamiliar teachers and students and classrooms, it was pretty chaotic in the morning. Buses were late, kids and parents were flying around all over the place, and parking was a nightmare. None of that seemed to phase her.
Her class is kindergarten through 4th grade, with 11 students total, one teacher, two aides. Everyone seems very nice. The only difficulty at this point is that I have to walk her to class and pick her up. The bus stop is very far away - on the opposite end of campus - and with her low muscle tone, I think she'd be completely worn out by the time she got to class to start her school day. We'll just have to see how this goes. She walks to recess just fine, and the school has tons of stairs and inclines so hopefully these walks will help strengthen her legs. But I don't mind going to her class. It's nice to be able to peek in the window and see what she's doing when I pick her up as well as answer questions the teachers and aides have about her.
She had an even better day today. Had occupational therapy in the morning, and when I picked her up, she was having fun playing blocks with a classmate at the table. That was really nice to see.
The only problem I'm having right now is getting her meds squared away at the nurses office. She is required to have Benadryl there in case she has an allergic reaction. Her pediatrician specifically wrote "Benadryl" on the medication sheet and didn't mention the actual drug name itself, so the generic brand I brought isn't good enough. The problem: Benadryl is no longer being sold because it was pulled from the manufacturer to be repackaged due to an error in the dose chart. I've driven to pharmacies all over the place with no luck, so now I have to go back to the pediatrician and have her sign a new form stating that a generic brand is okay. It's always something. Hopefully I can get this this resolved tomorrow and be done with it.
Glad my little angel is getting back into her school routine. Will be even happier when Gabby starts to get back into hers next week. It's been a long summer!! :)
Her class is kindergarten through 4th grade, with 11 students total, one teacher, two aides. Everyone seems very nice. The only difficulty at this point is that I have to walk her to class and pick her up. The bus stop is very far away - on the opposite end of campus - and with her low muscle tone, I think she'd be completely worn out by the time she got to class to start her school day. We'll just have to see how this goes. She walks to recess just fine, and the school has tons of stairs and inclines so hopefully these walks will help strengthen her legs. But I don't mind going to her class. It's nice to be able to peek in the window and see what she's doing when I pick her up as well as answer questions the teachers and aides have about her.
She had an even better day today. Had occupational therapy in the morning, and when I picked her up, she was having fun playing blocks with a classmate at the table. That was really nice to see.
The only problem I'm having right now is getting her meds squared away at the nurses office. She is required to have Benadryl there in case she has an allergic reaction. Her pediatrician specifically wrote "Benadryl" on the medication sheet and didn't mention the actual drug name itself, so the generic brand I brought isn't good enough. The problem: Benadryl is no longer being sold because it was pulled from the manufacturer to be repackaged due to an error in the dose chart. I've driven to pharmacies all over the place with no luck, so now I have to go back to the pediatrician and have her sign a new form stating that a generic brand is okay. It's always something. Hopefully I can get this this resolved tomorrow and be done with it.
Glad my little angel is getting back into her school routine. Will be even happier when Gabby starts to get back into hers next week. It's been a long summer!! :)
Tuesday, August 16, 2011
Summer's Over?
I don't know about you, but this seemed like one of the fastest summers ever. The break has been very nice, but I'm kind of looking forward to getting the girls back in the school routine.
Besides having a follow-up appointment with the neurologist in July, summer has been pretty uneventful. No trips to Children's Hospital, no serious allergic reactions, nothing too stressful. I wish I could say she's been seizure free, but that's not the case. I do, however, pretty much contribute them to her meds being a little off. Sometimes she'll spit some out and it's hard to tell if a full dose was digested. Other times, Mike will forget to give her the morning dose - he's not the best one to be in charge of this - and then her levels obviously drop. I've gone back to keeping a journal and documenting when I give it, how much, and what her behaviors are. It just helps with determining patterns. And it's nice to reference it when I need to speak with the doctors.
Being overly tired and stressed are still seizure triggers for her as well. If she goes a couple days without napping, I try to get her to bed earlier to compensate for it. Stress is the real tough one because I don't always know what situations are stressful to her. For instance, a couple weeks ago we were at the pharmacy picking up her meds and I put a vibrating back massager on her. It startled her so bad that she had a full blown seizure - one of the worst ones ever. This time it was the pharmacist telling me to calm down. Yes, I still freak out, but I'm getting better. Seizures are just frightening to watch. Gabby remains the pro at them, keeping her cool and using her head. I think that's why Raquel responds so well to her voice.
We pretty much stayed close to home for summer. Mike was diagnosed with Lyme's Disease a few months ago and continues to have some health issues. His joints get very sore so it's hard for him to walk and he fatigues very easily, so walking around amusement parks wasn't in the picture for us. We did lounge around a hotel for a week ...
... but spent the majority of our time at the beach. And how can you complain about that?
You can't - not when you live in Southern California!
Here's Raquel in her new wagon - one of the best investments we've made. It has an umbrella, the sides come down so it's a bench that you can sit on, and it holds up to 250 pounds. We pull that thing all over the beach sand no problem! And Gabby can ride in it, too.
Me and my baby - who isn't such a baby anymore! :(
Running through the waves with Dad.
She absolutely loves the water.
I think the smile says it all.
Last week we were blessed to meet Raquel's former teacher, Mrs. Sara and her aide, Mrs. Heather, in Carlsbad. I guess I can probably call them Sara and Heather now. :) We've stayed in touch since the last day of school, but this was the first time we've seen them since her preschool graduation. I was so happy and encouraged to hear their comments about Raquel. They noticed how much calmer she was, much more focused, not as shaky, and Heather said that she finally looked like she wasn't in any pain. At this point, I think we are in a good place medication wise and am so thankful Dr. Mower didn't make any changes at her follow-up.
Me, Heather & Sara. Thanks you two! Your encouragement, support and advice means the world to me, and I will continue to be Raqi's biggest advocate.
Tomorrow I pick up Gabby's books and then finalize paperwork and meet the nurse at Raquel's school across the street. Raquel is officially in kindergarten this Monday. Wish us luck. And, of course, I'll take pictures...
Besides having a follow-up appointment with the neurologist in July, summer has been pretty uneventful. No trips to Children's Hospital, no serious allergic reactions, nothing too stressful. I wish I could say she's been seizure free, but that's not the case. I do, however, pretty much contribute them to her meds being a little off. Sometimes she'll spit some out and it's hard to tell if a full dose was digested. Other times, Mike will forget to give her the morning dose - he's not the best one to be in charge of this - and then her levels obviously drop. I've gone back to keeping a journal and documenting when I give it, how much, and what her behaviors are. It just helps with determining patterns. And it's nice to reference it when I need to speak with the doctors.
Being overly tired and stressed are still seizure triggers for her as well. If she goes a couple days without napping, I try to get her to bed earlier to compensate for it. Stress is the real tough one because I don't always know what situations are stressful to her. For instance, a couple weeks ago we were at the pharmacy picking up her meds and I put a vibrating back massager on her. It startled her so bad that she had a full blown seizure - one of the worst ones ever. This time it was the pharmacist telling me to calm down. Yes, I still freak out, but I'm getting better. Seizures are just frightening to watch. Gabby remains the pro at them, keeping her cool and using her head. I think that's why Raquel responds so well to her voice.
We pretty much stayed close to home for summer. Mike was diagnosed with Lyme's Disease a few months ago and continues to have some health issues. His joints get very sore so it's hard for him to walk and he fatigues very easily, so walking around amusement parks wasn't in the picture for us. We did lounge around a hotel for a week ...
... but spent the majority of our time at the beach. And how can you complain about that?
You can't - not when you live in Southern California!
Here's Raquel in her new wagon - one of the best investments we've made. It has an umbrella, the sides come down so it's a bench that you can sit on, and it holds up to 250 pounds. We pull that thing all over the beach sand no problem! And Gabby can ride in it, too.
Me and my baby - who isn't such a baby anymore! :(
Running through the waves with Dad.
She absolutely loves the water.
I think the smile says it all.
Last week we were blessed to meet Raquel's former teacher, Mrs. Sara and her aide, Mrs. Heather, in Carlsbad. I guess I can probably call them Sara and Heather now. :) We've stayed in touch since the last day of school, but this was the first time we've seen them since her preschool graduation. I was so happy and encouraged to hear their comments about Raquel. They noticed how much calmer she was, much more focused, not as shaky, and Heather said that she finally looked like she wasn't in any pain. At this point, I think we are in a good place medication wise and am so thankful Dr. Mower didn't make any changes at her follow-up.
Me, Heather & Sara. Thanks you two! Your encouragement, support and advice means the world to me, and I will continue to be Raqi's biggest advocate.
Tomorrow I pick up Gabby's books and then finalize paperwork and meet the nurse at Raquel's school across the street. Raquel is officially in kindergarten this Monday. Wish us luck. And, of course, I'll take pictures...
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