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...
1 comment:
I'm happy you were able to post the pictures from the beach! It was such a fun day!
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