Wow, sorry I did not realize how long it had been since I posted. Time flies when life is status-quo.
Becca is doing pretty well these days. The ever present seizures are still there. She has good days and bad days, as always. Looking at her seizure log (which I just remembered to update for the events she had this morning), it seems I do need to add an extra clonazepam to hopefully break the cycle she is in now. Historically though, we know that she has always had a bad period right around Halloween. It was quite a blessing that she got to go out on Monday night. Mother nature played a very cruel joke on us, making it cold and rainy. I refused to let that stop me from taking my little girl out around to a few homes.
The costume was actually from 2009, but she had so many seizures that year she wasn’t able to go out. Technically it is some sort of “Garden Fairy”, but to us she is StinkerBelle – you know, kinda like TinkerBelle but she is our little Stinker, so she is Stinkerbelle. 😛
Earlier this month she also got to enjoy another milestone of childhood. We took her to the NC State Fair. We went early in the morning, and left shortly after lunch time. Unfortunately for us, we picked what turned out to be the single warmest (or hottest?) day of the entire 10 day run of the fair. We were hot and exhausted by the time we left. Becca got to enjoy the petting zoo, the merry go round (okay she did NOT enjoy that so much), and a kiddie coaster. Of course there was fair food consumed by all. Yum yum! I think Becca enjoyed looking around and just watching all that there was to see as we pushed her around.
I was grateful to be using her Convaid Cruiser and NOT her Zippie wheelchair. Her wheelchair has those annoying small castors, and although they are cool and light up, the chair is only good for indoor use. Get it out on dirt or gravel and it is a beast to maneuver. However her newer chair, is much better, since it has larger tires.
School has gone well. We’ve made it through one cold this fall season. She came down with it right before her first break for the school year. Being on year round school there are 4 periods of intercession. She spent most of her 1st one of this school year being sick. (well I guess there are really only 3 breaks – the 4th is what falls as “summer break” between school years). I digress. She started off with a cold and finished with an ear infection. How is that for injustice and a way to NOT spend your time off school. The good news for me was I got LOTS of snuggles. So much so I hardly wanted her to go back.
She continues to work on basic concepts at school. They are working hard at teaching her to recognize colors, shapes, letters and numbers. How well she does depends on her mood of the day. The ironic thing is, the same could be said about nearly any activity this child engages in. Her will is a strong one and can not be swayed. If SHE wants to, her fine motor skills can be amazing. If SHE does not want to work, she may as well not have hands or arms at all. I’m sure she is responsible for a few new gray hairs for her teachers and therapists. Alas we must have ones who are truly dedicated to their line of work, and love young children and those who are a challenge.
It is amazing these days as she has gotten older how her method of snuggling is different. She doesn’t so much curl up in my lap anymore. These days she prefers to sit on the couch beside me, nestled up all cozy against my arm, or under my arm. When she lays down on the couch beside me she will sort of play footsie, pushing her feet up against my leg, curling and uncurling her toes, pressing gently. Then she may reach up and grab my arm and pull me down on top of her, so that I am the one who is snuggling with her, and not her with me. I adore these sweet moments with her. I love that she is still so snuggly, even at six years old. I guess once a cuddle bug, always a cuddle bug. It is just sometimes the cuddle bug doesn’t fit so neatly in the mommy’s lap anymore.
I guess since my last update we have made a few medication changes. Trileptal has been added, and we finally increased her lamictal dosage. This has seemed to give her quite a few more good days. We tried to increase the setting on her VNS to a higher current, however she did not tolerate that at all. I’ve always heard of people having a cough, or throat problems with the VNS, but we had never seen such things in Becca. Even Dr. Mikati asks us each visit if we have seen evidence of them (as it would be an indicator of her tolerance). As soon as he increased the output she started with the sad cough. The kind a person might do if they feel something is in their throat and are trying to clear their throat. She continued this cough for several minutes. I gave her a sip of drink in hopes it was just a minor tickle. Especially knowing she had recently been ill before our visit. Nothing helped. I relented and had her doctor change it back. Darn!
Not to much else to report. Hopefully I shall not go so long and forget to update again. As you can clearly see, I do love to write. Writing is not my problem. Remembering to log on and do so is another issue.