Wednesday, September 25, 2019

Help! Wheelchair modifications, anyone?

I know I need to catch up a little--but this first. I've been putting off this request for some time, mostly b/c it "could wait". Now I feel like I'm running out of time.

Elena has a manual wheelchair, an old Quickie. She doesn't use it very often. Typically, we always bring it traveling, or if we know we'll have to walk more than a mile at a time without many breaks.

When we were at the beach last year, I met a very nice couple who I saw going on a ride. A man (Harold) was in a wheelchair, similar to Elena's, putting on an attachment. His wife was on a bike. Then they both took off quickly---I ran them down, begging to ask them about his device. They were so sweet, not only did they tell me about it, we rode back to our beach house so Elena could check it out.

This device is called The Firefly. It attaches to the front of a manual wheelchair, literally in seconds, and the chair operates like a scooter. Harold said it changed his life completely! His weighs 13 pounds, he can pack it as a carry-on on an airplane, he can put it on the chair in 20 seconds, and it can go 25 miles/hr so he can keep up with his wife as she rides her bike!

Firefly (from their website)

I thought about getting one for Elena, but I saw two main issues: she has to operate it independently, and I worry about the top speed being WAY too fast. I am pretty sure in order to get out of the chair, the Firefly has to be removed (untested--definitely true for an adult). I wasn't sure why we would really need one, as Elena doesn't use her chair much, and when she does, she's typically with me.

Elena's in high school. I can appreciate she doesn't want me, or any adult, always pushing her (she doesn't push the chair herself b/c she uses it when she's tired and needs to rest). If E is on a school trip and has the chair, I really don't want another student having to push her--if someone WANTS to, that's fine, but it shouldn't be their JOB. And E is tired of always being "the teen with the grown-up" on a field trip.

I thought maybe we'd try one out next fall. Or sooner, if we knew of a trip that she might go on, where I might possibly not chaperone.

That trip was announced the first month of school. It's in March 2020.

I'm working to see if we can try one out. Has anyone out there used something like this? If so, what did you like? Is there a different model you prefer? Is there one that can "swing out" so getting in and out of the chair is easier? I think this could be the key for Elena to be independent, over long distances, and be able to spend time with peers without a hulking adult presence.  Please comment!

Wednesday, September 18, 2019

Long Overdue...RECAP!

Hi Doodlers in Blogland,

As usual, I am exhausted before 9pm. But I wanted to put out an update, b/c we are still crushing it here, and I am holding together. It won't be the most beautiful recap, and I'm not putting up pictures b/c it takes too long and I feel the urge to put something up--so here it goes!

Jason moved out in June. He still lives in town. The kids are taking it okay.

We had a busy, fun summer. We went to the beach, a friend's beach, they had summer camp (E had two sleep way camps! she loved them!), sleepovers, went to some cool events. Lots of kayaking (kids kayak free for the summer here-I'm trying to get E to be independent. Didn't make it on her own kayak b/c it didn't rain enough here!). Elena pursued and earned a volunteer job at the local SPCA, which is great!

Kids started school. Elena started high school (!) 9th grade. I have permission to write about her experience, but I'll have to elaborate later (i'm too tired!)--the bottom line is she is doing GREAT. She is keeping up academically (it really hasn't gotten too hard yet, though), her math tutoring over the past year has paid off (she likes algebra!!), and she is involved in a few clubs. The school is HUGE, and for the first time in...what, 5 years? I don't think her "fall crouch" is actually that bad--WHICH IS AWESOME!--and I attribute that to the exercise and stretching we've been doing. I am so proud of her, it's a big change, and she is really flourishing.

Vivian is doing okay. She is in 5th grade, she loves school. She is very sensitive to personal relationships, so this is a fragile time for her. She loves her therapist (we all have one) and she is coping okay, I think she just wants an ear that isn't me. I started her in jazz dance and SHE LOVES IT. She keeps busy with friends, girl scouts, dance, and baseball. She is looking forward to the holidays and her birthday. She will get her epilepsy meds increased this week, b/c she's having a big growth spurt. I anticipate a lot of fatigue and moodiness with this increase; it's better than having seizures (she hasn't had one in over a year!).

We all ran the Women's Four Miler at at the end of August. It was a big deal for Elena; she can walk 5 miles per day, but 4 miles at once was A LOT. I'll write more about that experience b/c she was awesome. Viv ran the whole thing--yay!

As for me...I am okay. I've been doing this. I can do this. I'll keep doing this. I could use a break. I don't get many. I feel like my head and heart are in the right place; I'll find a good balance, even though I don't have it right now.

And Dad is doing okay too. He was one year post-op in September. That's a big deal for a glioblastoma patient. He finishes his chemo in a few months, and then it's wait and see. He's been a great patient, my mom has been the best rock for all of us.

Thanks for reading. More when I have energy!