These are a few of my favorite things…

Wow. That was SO COOL!

I was lucky enough to get to the Abilities Expo in Chicago this weekend, and it was awesome. (Yes, I am a child of the ‘80s. I also lived on the west coast for awhile, so I get to use the word awesome. Deal with it.)

It will take awhile to sort out the blur of all that was, but I wanted to mention of few of the most interesting things that I saw.

FreeWheel. – This is a single wheel, about 10-12” high, that hooks easily to the front of a chair with a standard footplate. You know how those tiny front wheels won’t go over anything? Yeah, solved. The FreeWheel (which has a fender – why can’t I get fenders for our back wheels?! – Question for another day.) turns in a way that your front wheels come off the ground slightly. This makes it a lot easier to push. The beefier front wheel also means the chair can handle rougher terrain. The inventor has collected pictures of users taking their chairs into the woods, on the beach, etc.
It also has an attachment for a rack: the perfect size to hold a grocery basket, bungee on your textbooks or set a baby’s car seat.
The downsides: the Freewheel only works with a standard type of chair. This won’t work on Kate’s complex chair. Oh, and it costs about $500. But, it’s probably worth it if does everything it’s supposed to.
www.gofreewheel.com

Freewheel's inventor. Necessity is a mother.
Freewheel’s inventor. Necessity is a mother.
This rack works well for a grocery basket or similar sized item.
This rack works well for a grocery basket or similar sized item.

Frog Legs – These are SO COOL! (Once again, child of the ‘80s, etc.) These were probably my single favorite invention at the whole show. I have been lamenting for years that Katie has such a rough ride. We can’t even go down the sidewalk without her head bouncing all over the place. These little shock absorbers fit above the little front wheels, and they DO work on a complex chair (YAY!). It’s a simple matter of switching out that front caster, so it doesn’t matter if the chair tilts, if the footplate is fixed, etc.
The downsides: I didn’t see one. Perhaps I’ll find some feedback that will fill that in, but right now, I’m just impressed. Unfortunately, I think I’ll have to wait to order ours until after Katie’s surgery this fall, as we may wind up in a new chair.
Cost: $350
www.froglegsinc.com

Mobility-Usa’s Grillo – I don’t know about you, but I have kind of a hard time with Katie’s gait trainer. I have to take it in to be adjusted every time she grows. She’s nine – she grows a lot. And, I can’t fit her and the Bronco in my can at the same time, which means I need to drop the thing off and pick it up separately. What to do?
Oh hey, let’s make it push button adjustable! Yes, I am about to spout out another great ‘80s word.
The Grillo is an anterior gait trainer, meaning the bar that connects the sides is in front of the user. It has articulating vertical supports (think of knees bending or straightening). You can change the ride height with nothing more than your unprofessional hands. It also has a padded strap seat, padded chest strap, and a handlebar instead of a tray. Our tray mostly just gets in the way, and is one more thing for Kate to bruise her arms on. The handlebar is also adjustable and removeable.
Oh, and did I mention this? – It FOLDS. No seriously – one of the gigantic pieces of equipment for my kid, and it doesn’t require a permanent parking space? This sucker will fit into a trunk!
The downsides: there is still some hardware that is probably within reach of flailing arms. I would be looking for ways to pad that. For some kids, the tray is very useful, and it doesn’t have that. Also, if someone really needed head support, I’m not sure how you would add that.
Cost: I’m sure it varies, but adaptivemall.com has them for about $2500 – $2800. They also have a posterior version, which might solve some of the padding and head issues. This is also DME, and if your insurance covers equipment, you may be able to get it covered with a good letter from your PT.
www.mobility-usa.com

This gait trainer raises and lowers with the touch of a button (or two).
This gait trainer raises and lowers with the touch of a button (or two).

There were a couple of things I was expecting to see, but was bummed (see 80s references) not to find.

First off, is there a sling out there anywhere that really works well for children with dystonia? I saw nothing new or innovative with transfers. One of these days, I will make something.

Also, I was expecting to see VPG there. The first vehicle purpose built for a wheelchair user, I wanted to see what they have coming up next. I also wanted to offer my suggestions about how they missed the mark the first time around. I know they would love me for that. No such luck.

Finally, some of the workshops were a little lackluster. The therapist from Shriners, who covered equipment and ways to make your own cheap versions, did a nice job. The guy who covered home modifications was basically a sales rep.

Overall, this was worth the trip. Admission is free, so if you can make it to one of the shows, it’s definitely worth the time.

You can check out their schedule at www.abilitiesexpo.com.

Don't Diss

The Accidental Tourist

You don’t know what you don’t know.

This truth has vexed me for years now. You mean there’s a fix for that? You mean there’s a thing that might make this other task easier? Okay, great! Why didn’t you tell me?

Oh,yeah. I didn’t ask.

I am getting better at asking questions. Sometimes, it gets me nowhere, but once in a while it pays off.

A while ago, I accidentally found out about a lower profile g-tube button. Then, when I was at the home medical supply store, picking up our monthly accessories, I mentioned the problem to the tech.

He told me I should go to the Abilities Expo.

Huh?

Yep, complaints work sometimes. It turns out, there is an event that’s held every couple of months in different cities. They showcase all that’s new and awesome in the world of disability. Check it out:
www.abilitiesexpo.com

Since Chicago isn’t too far from where I live, and the event was coming up soon, I decided I needed to check this out. After deliberation, my family decided that Katie would stay home for this trip. So, I’m on a scouting mission.

I can’t wait to see what’s out there.

Thank you. Now shut up.

Shortly after Katie was diagnosed, I was given a copy of the essay, “Welcome to Holland”. Odds are, you’ve read it. If not, go here. I’ll wait…

So, the Holland essay gave me a little comfort in the early days, and gives the overall message that things will be a little different, but they will still be cool.

Later, I read a piece called Schmolland. Read it, right? If no, you should – it’s great.

This one also spoke to me at a time when I was really feeling like I lived on my own planet. Play dates? No! Stress! Invites? What are the circumstances, will there be an easy escape, will it be during nap time, is there room for a wheelchair, is there a place I can change a four foot tall person’s diaper?

I still feel like I’m from my own planet sometimes, but much less than in the past. I know so many parents now, it’s like we made our own country. I have learned, finally, that this is normal. Not “normal” (do you see air quotes?), but really, just normal. I worry about my kids. Both of them. I rejoice in both of them. They give me utterly different causes for stress, and also very similar ones.

Every once in awhile, someone thinks they are complimenting me by saying something like, ‘I couldn’t do what you do! You’re so strong!’. Have you gotten this?

If you’re one of the people who says this, let me just say 1. Thanks. and 2. Shut up.

Parenting is not for wimps, and it isn’t for people who do things halfway. Are you a parent? Do you believe you couldn’t do it if your kid needed something more, or different, or whatever? Give yourself more credit. If you are faced with a challenge, you will handle it.

And when you can’t walk, I will carry you.

One of the first resources I came across after getting Katie’s diagnosis was a list group for agenesis of the corpus callosum out of the the U of Maine. The parents that made this group helped carry me through the earliest, most difficult times in this journey.

One lesson I learned: you can fire the doctors that don’t impress you. This sounds obvious in hindsight, but at the time, it was a revelation. We had a stack of specialists we were trying to see, and we waited months for most of those appointments. The idea of pitching that doctor back, and waiting again, and taking our chances again, well- it just hadn’t really even occurred to me in the early days.

On what seems to be a totally unrelated side note: don’t use waterproof mattress pads. This might sound a little counterintuitive – they are popular for a messy and expensive reason. However, I have a story that will tie it all together for you.

When Melinda was little, she threw up a lot. When her momma took her to a gastroenterologist, he said that her esophagus looked horrible from all the acid coming up. He also said there was a simple procedure to help keep the acid in the stomach (it’s called a fundoplication), but that because Melinda was ‘a retard’, he wouldn’t do the surgery. He suggested that she probably enjoyed forcing food up, and she would ruin any surgery he might do.

Um, yeah. Can you say ‘fired’? This mom did.

Melinda’s momma found another doctor, and this one did the surgery. It helped immensely.

So, back to the mattress protectors. Having a chronic vomiter, we all try to minimize the damage. One night, Melinda’s momma came into her room, only to find that she had vomited. The mattress protector held the moisture up around her face, and cut off her airway.

She was rushed to the hospital. Melinda had a seizure – they don’t know how long she was without oxygen – and exams showed that her liver had been damaged. A gastroenterologist was called in for a consult.

Guess who it was?

Why yes, doctor #1, or if you prefer, the retard doctor. (I’m sorry, I don’t approve of the use of the r word in any derogatory sense, however it is a repetition of this doctor’s use of words for the sake of demonstrating how little he understood his patient, so please forgive the language in this limited context).

Melinda’s momma heard him coming from the hospital room. She got up, went to the door, and blocked it. Arms out. Legs out. She made it clear to everyone involved with her daughter’s care at that hospital that this doctor was not to enter her child’s room, whether she was present or not.

And so Laura, Melinda’s momma, became one of my first mentors. That story, presented by this sweet, unassuming momma, helped me to understand that I am my child’s advocate. Me. Every time.

Years have gone by, but I saved those emails. They gave me strength, they gave me a boost when I needed it.

Thank you, Laura.

Today, I got this post from Laura:
“Melinda passed away peacefully today. Her Daddy and I were with her as well as her Auntie Pat. She was our sunshine girl and we were very blessed to have her in our lives. Huggles to all, Laura Ours (Melinda’s Mommy)”

I have no words. But sometimes, life just sucks, and there’s no way to make it suck less. Huggles to you Laura. You and Melinda will be in my heart forever.

Melinda

Round and Round

Round and Round

Katie saw her prep doctor on Friday, and was given the all clear for her spinal surgery. I was expecting much more than what we got – a point person (good!), a brief synopsis of the things that can go wrong, and a pretty thorough physical. Her lungs are great (I knew this: she’s a yeller), and there’s no reason to think she would have complications with surgery.

The doctor did say that they would want to change out her g-tube for a gj-tube prior to surgery, because her stomach might go on strike for a couple of days after it’s over. And he explained how the gj-tube is threaded with fluoroscopic guidance down into the small intestine, where it can slowly absorb her water. She’ll probably be on formula for a few days, too.

I had heard of gj tubes, but never really explored them .So, naturally my brain went off in that direction. She always fusses about her boluses – should we do this instead? Hmmm….

So, naturally, I consulted my friend the Internet. There are some pluses to the dual port tube. You can actually feed a person into their stomach and intestine at the same time. This means you can give an appropriate bolus in a reasonable amount of time without hyperextending either organ.

There is also a button that allows for direct insertion of the feeding syringe. No more extension tubes, that sounds nice!

But the downside is that this is not a tube we can change at home. Katie needs her tube changed every three to four months, and going in x-ray to have this done all the time sounds like a pain in the butt. We would also be in that boat if the tube came out accidentally, which is more likely than you’d think.

So, I’m going to stop chasing for the moment. My OCD is still twitching a little at the thought of that, but we’ll get a close up of this when Kate has her surgery, and I can’t see hassling with another change before that. Plus, I just shoved through the change to the smaller button, so insurance would probably get twitchy on me, too. The small button is going pretty well, BTW.

‘Night, night, all. Shut up, OCD.

The G-J tube, in all it's glory. Looks a bit like a sea creature...
The G-J tube, in all it’s glory. Looks a bit like a sea creature…