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!

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!

Begin Again

When I wrote that 2019 hadn't started well for me, I wasn't kidding.

Jason and I are separating.

The kids were told yesterday.

There is obviously a lot of change, which is very, very hard.

2019 in a nutshell

Hi blogland,

Well, there's a lot going on. 2019 has not started off well for me. The kids are okay; Vivian is starting to wean off one of her epilepsy meds, and E has been doing well as the year comes to an end.

I have some to report about E's last field trip (huge success! YAY FOR HANDICAP ACCESSIBLE SHOWERS!) and our plan to transition to high school.

I have lots to tell, I'm just too drained to do it right now. Love to you out there, for you all still reading.

Winter Coat Project

If you're a crutch user, you know how cumbersome it can be trying to use them with a warm thick winter coat.

Elena has tried the half-cuff option for loftstrand crutches; she needs the full cuff to move her best. It's difficult for her to stuff a winter coat sleeve into the cuffs--most of the time, she just shoves her forearm into the cuff, so the coat stays scrunched up right around her elbow, leaving her arms cold and uncomfortable.

I've tried working around this for years. Typically, a grown-up would help E get her coat inside the cuffs. We are trying very hard to enable Elena to be as independent as possible, and this includes dressing with coats or other bulky pieces. I have a dozen or so sketches, some involving a spring loaded cuff (which I don't have the equipment to make) and others involving creative adaptations for clothing.

One thing I didn't have was a spare coat lying around in order to test out my model. I tried with some extra fabric, but it's just not the same as using an actual thick garment. I couldn't find one that would fit Elena at a thrift store, and I didn't want to buy a brand new coat, because I was going to cut it. I was looking for an inexpensive test option in case my idea failed. I couldn't find one.

I decided to write to one of our favorite retailers to ask for help. (Please keep in mind, I am not paid to advertise for a retailer. Occasionally I have been asked to write pieces and have received compensation, but this is rare and always disclosed.) I wrote to Boden, telling them about my plan, and wondering if they had any damaged/factory seconds that I could obtain at a discounted price. They asked to see my sketches, which I sent, and had some questions regarding Elena's color preferences and size.

Much to my surprise, a new coat was mailed to us a few weeks later, completely free of charge! It is BEAUTIFUL. They paid attention to the material--a bulky coat (like a puffer jacket) would be too much material for me to handle once cut; the coat is waterproof, versatile, warm and relatively thin. Elena even loves the color. She loved it so much, and didn't want me to "ruin it" by trying my adaptations.

But we did it.

The Coat:

"Cosy Waterproof Coat"

We had Elena wear it for a week. Here she is, wearing it (fits beautifully!) to swim practice on a rainy morning. She just stuffed her arm in the cuff, the sleeve is mushed up around her elbow.

Sleeve mushed up above cuff

We decided to try to leave enough sleeve so that it would bump up against the cuff just a little, with the idea of creating a detachable bottom portion of the sleeve to accommodate her crutch cuff. I wasn't exactly sure if I should try to make a long "crutch pocket" out of the rest of the sleeve, or have it attach to the cuff, or have it attach to the jacket. First I had to make the actual cut.

I went to a friend of mine, JW, who enjoys sewing and knows a LOT about some tricky stitches. I didn't have confidence in my sewing abilities--but after talking with her about the plan, she knew she could make it work!

HERE WE GO

Two "coat cuffs"

       
JW made a "hidden seam". She folded back both edges of the cut coat towards the inside, and then expertly sewed them together by expertly guiding the needle through the seam by touch so as not to puncture the outside of the coat. It sounds complicated--but the hardest part was getting the folds right among the inside padding of the coat (in my opinion).

Folding towards the inside

Pinned and ready to sew!

       
JW did this to each end of the coat cuffs and the coat sleeves. Here is a close-up of the seam, once sewn. I think I can do this type of seam, but it would take me MUCH longer than JW!

Look at that pretty seam!

All Seamed Up!

At present, I've been trying different methods of using the coat cuffs with E's jacket. In the end, they all look largely the same as she's moving around, so here is a current picture of the coat and separated cuffs. Elena is testing out what I'm calling "coat cuff tethers". She has acknowledged that if she has to snap on/off the coat cuffs to either the rest of the coat or the crutches, she'll probably just stuff them in a pocket instead and end up eventually losing one/more cuff/s. I'm trying to find a way to keep them attached to the coat, but easy to maneuver with the crutches.

Coat shown with tethers

Coat on with tethers (a bit too long)

       
The idea is E can put her coat on, then while sitting or standing, put on her crutch cuffs and (again, sitting or standing) then use one hand to help the other put on the coat cuff.

Side view. Coat cuff dangling

Putting on second coat cuff

       
Once the coat cuffs are on, the coat itself fits well, there are no bunchy elbows, and most (if not all) of Elena's arms are warm and cosy.

Completed look

Front view, coat cuffs on

       
The procedure of putting these on and off is still a work in progress. The tethers are a bit too long (I attached them with a thin double cord to each of the shoulders, not one long cord from one coat cuff to the other--like you've probably seen in a lot of toddler mittens) and sometimes they spin around the crutches. Elena complains that her hands get caught in them a little, so I can fix that by braiding or knotting the two-ply cord. She hasn't mastered the art of putting her coat on with dangling sleeves with a backpack (I recommend she hold the coat cuffs in her hands while putting on her backpack). It'll take some practice, no matter the final iteration of separated sleeves. I strongly believe that the coat cuffs have to be physically attached to the coat in some way, as to not lose them. This alteration also leaves Elena's hands cold, so she'll have to wear gloves or crutch pockets.
         
Thoughts? Suggestions?

HUGE thanks to Boden, for giving me the opportunity to try this with a coat that fits Elena exceptionally well, and that is perfect for the weather and the challenges associated with this project. Thank you to JW for her sewing expertise and her time to help make this coat a success!

Quick Recap: Breakthrough (sort of), End of 2018

Hi everyone,

First of all, thank you all for your comments--truly, you are extraordinarily helpful at times when I feel like no one understands our situation. I feel like the biggest issue I have is trying to combat/learn our way out of issues at home when I do not have permission to write about them in detail, or at all. (For any new readers, Elena and Vivian have to approve anything I write on this blog about them).

So I'll do my best.

First, the breakthrough.

We have been working on a lot of self-sufficiency/executive function tasks/sequencing/attitude things for YEARS with our educational and psychology team. The reality is, we really haven't made much progress. We are considering a psychiatrist; not immediately, but the possibility is looming of getting help that way. (I understand that there isn't a lot of detail behind this).

Essentially a lot of this boils down to Elena being able to do things, but just doesn't. (Basic things. That she can do. I swear, taking all your comments into account, I am not asking too much with my demands.)

So, we are trying to find ways for her to practice skills without increasing her isolation (ideally, if she isn't ready, we don't just leave her at home, for instance). This has been a near constant struggle.

What ended up working was using her upcoming Chorus competition field trip (to Nashville) as bait.

I simply told her I wasn't going (as chaperone, or as her helper).

Her mouth dropped.

And then I told her if she wanted to go, I would not let her delay the group; she would have to find a way to prepare herself, using methods we have been trying to teach her, and she would have to demonstrate she was capable of this by a certain date or she would not be able to go.

So, this worked for a few weeks (a record!) and then sunk back, but as she realizes I am dead serious, I think things are getting better.

End of 2018

December was a whirlwind of end-of-school performances, medical appointments, and lots of time dealing with health insurance. My in-laws came down for Christmas; we always love having them, and they were especially helpful this year! My family joined us the day after Christmas and it was wonderful having everyone here. Dad is doing okay, Jason was our chef and dinner was lovely, and we even managed to get a family picture!

I don't know about you all, but my 2018 was a few amazing highs peppered among a lot of lows. Among the high points was my trip to Africa, spending time with friends and family in a few select cities (DC, NY), and our trip to the beach. The lows are more of the struggles vaguely described above, of course, my Dad's diagnosis, Jason's traveling for work, and navigating Vivian's epilepsy--which took about 3/4 of this year. I've been trying to take care of myself and our family during this time by stressing healthy eating, regular exercise, and a regular sleep regimen.

I know that the New Year is just another day, but the idea of starting fresh is appealing. Here are a few lessons I've learned this year, in no particular order:

1. Keep the best notes possible regarding health expenses. You never know when someone will be hurt or sick, and it can save a ton of time and stress if this is organized. I thought I was good before, when I blew out my knee in 2015--but Viv's condition is pretty complex. My plan needs some tweaks, including better digital organization, but I'll get there.

2. Everyone says it, but it's true: take time for yourself. I enrolled myself in an adult beginner tap dance class; I'm not good at it, and I can't make it every week, but I try, even if it's been a terrible night at home. I'll even get a sitter. The physical and mental challenge of tap really gets me out of my negative headspace, I can't possibly focus on problem solving home challenges AND getting the dance combo right.

3. Make an exercise goal. I joined an instagram challenge (something I've never done before) and while it wasn't super difficult, it made me structure in exercise where I wouldn't have otherwise. Now I make monthly short-term goals, and I've been doing well on them for the past three months. My biggest achievement (I think) is I've biked 50 miles/week (on my decade-old fluid trainer in the cold garage, mostly) for the past three months. I have bigger fitness goals, but it all depends if I can jog again, which I'll be working on in 2019.

4. Get fresh air every day. I know when things are negative, or cold and grey outside, sometimes cave days are good--but getting out, even if for a short while, makes them better (I think).