Well, here's a random update of what's going on here...
Parent-Teacher conference: Elena is doing well in 3rd grade. I feel like...well, it always takes longer for Elena to learn anything--gross motor, fine motor, speech, vision--and academics seem to be the same way. And that's okay. Quite frankly, we are thrilled that Elena is mainstreamed in school and is "on grade level". We have a private math tutor, which is going quite well--without him, Jason and I feel strongly that she'd fall behind (or be more behind than she is). It's a little weird...it takes longer for Elena to get a concept (borrowing and carrying numbers, for example) but once she gets it, she gets it. But it seems to be that way with almost anything. E just takes more effort, I guess. We do most of this privately, b/c I feel strongly that the teacher/aides are busy with lots of kids (not just mine) and that I need to be conscious that others might need more attention in the classroom. It is a struggle, but the payoff is worth it. Absolutely. She loves her class. I love her school. I love her aide, and how receptive they are to my concerns. We listen and communicate. I am pleased with her educational team, and I am proud of E. I am also tired, b/c this takes a lot of effort.
Vivian is doing well in preschool. She is reading (has been for a while), and Jason and I feel like she might not be as academically challenged as she should be. BUT, she is still learning how to be patient, take turns, not interrupt, etc. so her preschool environment is great for that. She enjoys her classmates, and is excited to tell me about her day. Viv is a gem of a girl. And she really knows how to encourage and enrage her sister. Typical little sister.
I am TIRED. I have 7 more days at my job before my resignation date; and I have to confess, I am ready. A large part of me is disappointed in myself for not making it work (work-life balance), and the other is proud of me for finally realizing that "doing it all" isn't making anyone happy. Elena and Vivian can't WAIT for me to leave work (even though they'll still be at school). Our health benefits will change, but we are prepared for it. Jason is supportive. Our woefully neglected house will get some TLC. I will be more present for the kids, for their education, for their enrichment, for Jason, and simultaneously, have some time for myself. It still sounds like a fantasy. I hope it isn't.
I have a lot to do before Halloween and Vivian's birthday. Lots is going on in my head (some of it is even on paper!) but I am way, way WAY behind. Mostly I'm busy trying to wrap things up at work and trying not to stress out about other things. If it's important, it'll get done. That's the modus operandi around here lately.
Piano Lessons: Elena has been asking for piano and voice lessons for MONTHS. Jason took the initiative and found her a great teacher close to home. E's piano lessons not only give her confidence and help her enjoy something new, but it helps with her fine motor skills (obviously), core strength, sitting posture, math skills, and she LOVES IT. It is nearly impossible for her to practice every day (there simply isn't enough time between school and bedtime) but we'll stick with it as long as she is enjoying herself.
Spasticity Update: E is on her toes more. I feel like she looks bigger lately...that could be part of it, but regardless of growth, she is on her toes more than she used to be. I hope to wait for any lengthening procedures until she is 10 years old--I hope we can make it. I'm also entertaining different doctors--I'm just not sure our orthopaedic team here is passionate about helping Elena to find her true potential. Second (or third) opinions are always a great idea, so I'm hoping to make some appointments in Summer 2014.
Wednesday, October 23, 2013
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5 comments:
great update! glad to hear E is enjoying scool as well as viv! i have cp too, spastic diplegia as well. i used to toe walk around her age, fromt he time i was diagnoised until about age 8 or 9, therapisst worked with me,a dn now at 13, im toe walking a lot less! i would definetly consult your PT abot it and see what they say cna help, i know of this brace i almost got recentaly called kiddie gait's they seeed to pull up my toes A LOT more thn i can do myself, so essentailly i was walking freely the only thing is my knees still go in a lot, but if i work on that i bet ill be great in a year or so! keep up the good work E!! you go girly!
I've been in "similar shoes" on several things you've posted here. I have a 17yo daughter with CP. She had lengthening surgery at the age of 11. Best thing ever. But, you're right. Wait as long as you can but not until it changes her bone structure (making it twist or worse). Tutoring makes a huge difference. It just stinks how exhausting it is (for your wallet, too). And finally, I eventually left work, twice actually. Best thing ever despite the struggles. One suggestion...before tackling the house or anything else, take one day for yourself. Do nothing. Or read. Or get a massage. Or sleep. Just indulge yourself before tackling everything. Take care of you! Great to read the update!
I love our ortho we see at SB clinic but he has his own practice too. His name is Chad Aarons, also in the same practice I have a friend whose son has CP & is in a chair and they love Dr. Sharps. (They are in Richmond, but accessible off of 64)
Have fun with your new found freedom!!
Best of luck on being at home and managing E's spasticity. I keep weighing the benefits of staying at home or continuing to work (I work part time now) with the complexities of a complex child and a younger one. It is hard to balance it all.
Daniel is younger (4), but we are going in to look at spasticity management next week since he has had a lot more tone issues since early fall (longer preschool? growth?. I am really hoping we can manage lightly for now.
I love reading your blog and seeing Elena grow as well as getting some ideas as to what we might expect going forward :).
Is it cold there? Once it starts getting cold my spasticity increases. I am/my body is very sensitive to temp changes. After age 7 I never had to have any more lengthening surgery. Ask your PT if she could do exercises to strengthen E's feet/calves. It helped me learn to keep my feet in a better alignment and put my weight on my feet instead of my toes.Doing my PT sessions barefoot helped with spasticity. I also recently had a reflexology massage and that was a HUGE help with spasticity. Elena would love it if you can afford it. The music lessons sound fantastic!
I think you are making a good decision for yourself and your family in relation to your work.
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