Though you'd never tell from these photos, Lola's had a tough old month. She had an ambulance ride and a long trip to emergency - resulting in us leaving without ever seeing a doctor - all due to crummy seizures. She also had some crazy days with lots of screaming at extremely high decibels - for what reason, we're not sure. Something was bugging her, that's for sure. We finally saw our neurologist after waiting five months for an appointment. He was fairly negative - focusing on the severity of her initial infection. I guess we looked like we needed a reality check. At any rate, we weren't happy with "stay the course" so we advocated for a med switch. We started Banzel/rufinamide last week and are titrating it up very very slowly. Our hope is to add this med, then bring it up to therapeutic levels, then drop the valproic acid. We sure don't want her on 3 seizure meds. We are still doing ivig every three weeks - just went on Friday and Lola did amazingly well. She just hung out - didn't sleep - didn't scream - just listenened to Glee on her ipad and snuggled! Wow, what a girl. She's doing great the past couple of days and we hope this trend sticks around. Some other options the neuro gave us included implanting a vagus nerve stimulator (VNS), which is like a pacemaker for the brain, and another option is for a corpus callusotomy (sp?), which would require disconnecting some fibers between the left and right side of her brain. Um. Yeah. Not likely at this point, anyway. If they could give us decent odds, we would consider it - but there are too many risks and variables, with no guarantee of seizure freedom. So, there we go. Sobering on many levels.
Liam is doing pretty great so far in grade three - he loves his teacher, he has some friends, and brings home 100% spelling tests. We'll try not to focus on one or two incidents of fighting....we think he may have been framed. ;) He's doing gymnastics - tumbling and trampoline and he loves it.
Lola's doing really well at school, as reported by Deannie, Lola's aide. She has a little friend named Gracie, who sits beside Lola at snack, and holds hands with her on walks. So amazing. Lola attends regular pre-school with her typical peers. She's been doing so well with things like focusing, sitting in circle, etc. I guess yoga wasn't her favorite (ha), but she really likes the dance studio. We've had to postpone her dance lessons as we struggle to get ahold of these darn seizures.
Well, Lola's watching her Bobs and Lolo DVD and it's over - better go help her out! We're trying to embrace the good days and hang on tight for the bad. Isn't that what everybody does?
Gillian,
ReplyDeleteDo you know how amazing you are? I thought I knew who you were when we were growing up and I thought you were a strong young woman then and now, I am in awe of your strength and perseverance. Not only are you raising an amazing young boy who will grow up to break hearts with those eyes and smile, but you're also raising a beautiful little girl who is determined her voice be heard! Amazing.
I love how you battle for Lola and Liam equally but in different aspects of their lives. I know, deep down you must battle with that question "why" and you so selfishly put your unanswered question aside and battle. This goes for Steve as well but I am speaking to you as a mum.
Gill. When I read your blogs and posts on updates of your kids I smile and hug my kids tight and thank God for small blessings. I think you are an inspiration and just want you to know that, and if you ever need me for anything, I am here. I continue to pray for Lola's break through and for your family to have their wishes granted. Much, much love, Andrea