Wheelchair Updates

Our journey with Isaiah's first wheelchair has been quite the learning experience.  Before we had Isaiah's chair, I'd talk to other parents of kids in wheelchairs or adults in chairs, my head would spin when we talked about camber, seat depth, etc etc.....but now that we're 4 months in, I'm feeling a little more confident...at least in terms of Isaiah's chair.

We've loved his chair, and even though it was custom-built for him (you won't usually find a 7" wide wheelchair), but there are some aspects that were just not working for him so as the months have gone by, I've been slowly tweaking things (thanks to the advice and help of many fellow OI parents), and seeing a big difference in how Isaiah sits and moves.

I'm a nerd and made a comparison photo below to explain for those interested in learning about Isaiah's chair and for those who may be looking for a wheelchair for their kiddo.  Please know, I don't know one person who finds their chair "perfect", tweaks always seem to be necessary, and they seem to come naturally.

1) The harness-  The original harness was a gigantic harness system that clipped over Isaiah in four different spots.  It was WAY too big for him.  It's since been replaced by the DME (the medical equipment company) with a smaller one, but I kind of hated all the clipping and unclipping of the buckles, so thanks to a local OI family, I was able to swap out the clipping harness system with a velcro one.  

SO much easier....a little too easy.  Isaiah learned to take it off.  I've since added a load more velcro which curbed the problem, but we've also agreed to allow Isaiah to keep the harness off in certain situations (in our house, at the hospital under my close supervision).  He is really good about the harness.  If we are out and about, he puts the harness over himself as soon as we get him in his chair and out of the car.  (Hello there, independence.)

2) Added pipe insulation over the wheels' push bars- I should have the bars taken off since Isaiah doesn't use them, but that involves taking the wheels somewhere and having them deflated so that we can unscrew every darn screw on there.  Who has time for that?  Isaiah had started putting his hands down in between the bars and the wheels and worrying me that he'd hurt himself or get stuck...so one of the guys from the DME suggested putting the insulation on and we love it!  It's no added weight and actually makes it easier for Isaiah to try to grasp the push bars.  It also blocks his ability to put his little hands where they don't belong....they are easily removable and protect my walls. ;-)  

3) My favorite change- the cushion!- The cushion that Isaiah's chair came with is fabulous...very well made foam, comfy to sit on....but it was just too long.  His legs sat entirely on the seat with just his feet hanging off, and that really hindered his strength in pushing.  The seat was originally perfect on the day we got the chair, because the backrest was more forward than it is now...but then he couldn't reach the wheels to push himself and pushing himself was the whole point(!).  So we had to push the backrest back a few inches, taking away his ability to "short sit" (short sitting is how a person typically sits in a chair/stool...knees and hips at 90 degree angles, feet flat).  I let it stay that way for far too long (because cutting the seat freaked me out- that cushion is expensive! and I thought he'd be getting rods surgically placed in his legs sooner rather than later, which would lengthen his legs a small amount, so I didn't want to make changes to just change it again right away), until one day I went to our local craft store and picked up a piece of foam remnant for $5.  (Mind you, a few of my best OI mom gal pals talked me into and through this.)  I measured Isaiah from butt to knees while he was sitting and cut a piece of foam to fit.  I removed the original cushion from its cover and put the new piece of foam inside the case, placing it on Isaiah's chair....and he was sitting so much better!  Of course, his legs were just dangling until I added #4 (see below), but he was on his way to short sitting!  As a few weeks went by, I noticed he was sliding in his seat, which had me a bit nervous, so one of my OI mama friends sent me the cushion cover Isaiah is currently using- and it includes a pommel, which holds Isaiah in place.  Also, the fabric has skulls on it...which is the most important fact here, obviously. ;-)

4) The last big change I made to the chair was adding a place that Isaiah can rest his feet.  The footrest that came with the chair only comes so high, so when I made it so Isaiah could short sit, I also used a piece of foam to create a rest for his feet.  I've snazzed it up with fabric now and had to make it a little taller when we added the pommel cushion since that cushion is a little bigger, but it works really well under Isaiah's feet.  it gives him a proper place to rest them and bear weight on his legs while he propels himself in his chair.  Since we've added this cushion, Isaiah moves so much faster.    

I'm sure we'll continue to change Isaiah chair to meet his needs as time goes on (we also added a bike cup holder on the back using a zip tie to hold Isaiah's cup of water...at some point we hope to find a way to add it to the front. :)

Physical Therapy Update

When we went to Isaiah's first OI clinic a few weeks ago, we met with a physical therapist (PT) at DuPont.  Isaiah has a PT that he sees weekly (actually twice a week because he also sees her for water therapy!), and that we adore; she was thrilled to hear that we were meeting with a PT with lots of OI experience.

Meeting with a PT who frequently sees other children with OI gave us the opportunity to get lots of ideas for what PT should look like...and a lot of that was already implemented...rolling over, tummy time, reaching passed midline....I could on, but she also gave us the go ahead to try some things that I have been hesitant to try at home with Isaiah's regular PT. (Basically, stop being such a chicken, momma.)

One suggestion she had for Isaiah was that he needs to try "short sitting"....coming up with something for Isaiah to sit on took some creativity but once we figured it out, it was amazing!  He's rocking putting some weight on his legs 

"Hello? Dr K? It's time to take this splint off now."
(This photo is from a few weeks ago, when he had a broken arm)

We're even working on getting him short sitting in his wheelchair like he should be. 

This picture was shot in the middle of changing things up. ;-)

 Originally he was short sitting in his chair, but then he couldn't reach the wheels because he was sitting too far forward.  I put off finding a solution until we talked rods with his orthopedic surgeon (rods will likely lengthen his legs, so I didn't want to change his cushion if it was only for a short period of time, especially since he's been successful propelling his chair sitting the way he's been).  I chatted with some fellow OI moms (once I knew surgery is being put off) and some suggested cutting his cushion....I couldn't do it though; that little sucker costs hundreds of dollars!  Instead, I found some thick foam at a local craft store and cut that to size.  Bonus is that it was a remnant; I got it for $5. I've got enough for a foot rest and an extra seat cushion!


Beyond short sitting, we're also trying to give Isaiah ample opportunity to scoot on his behind.  Now that he is rocking independent sitting, we're hopeful he'll start trying to get moving.  We want to give him a good, stable place to work on moving, and one suggestion we love is to give him baths in a laundry basket.

Yup, a laundry basket!  The holes give and sides give him lots of areas to grab onto to support himself and pull. He was still getting baths in a baby tub, we're going to give him a few days outside the tub in the basket (to get used to being in it) and then we'll be moving on to baths in this basket, hoping that the water will give him the ability to move (hello at home water therapy).  I'm nervous that I'm going to have one slippery little boy, but he really can and should be sitting up in the tub to strengthen his muscles.  Isaiah hasn't been challenged at bath time, it's time to change that. :)


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Sorry for the lack of Wednesday posting, we had two appointments that day that took over my brain. ;-) More on that next week. :)

Longwood Gardens/Wheelchair Life

Friday night, Isaiah and I went on an impromptu trip to Longwood Gardens, it's acres of gardens, fountains, and more.  We have a membership that Isaiah's aunt and grandparents go for us for Isaiah's recent birthday.  The weather was just perfect for a night out and so was Isaiah...he had slept in on Friday, and had a long late nap in the afternoon.

We met friends and enjoyed the summer Nightscape program, full of colorful fountain shows and light programs along the paths.

We were there for about two and a half hours, most of which Isaiah spent in his chair with light up wheels....the little casters in the front light up if you go a certain speed, and man, they were a hit!  So many "woah, cool stroller!" (lol) "mom, I want one of those!" and "man kiddo, those lights/that wheelchair are/is so cool!" 

This was our first positive outing with the wheelchair that we've had in a while...

So, you know how I went on a break from blogging and I have yet to get back to my old schedule?  Well, that's because we had a handful of pretty negative experiences while out with the wheelchair, a few seriously painful ones within one weekend, and I let them bother me and make me angry.

I keep it it real here, but at the same time, I don't want to be whiney.  I don't want readers to feel like I am a giant complainy pants about our life because I am so grateful for our life.  I don't want Isaiah to look back on this blog and ever think I see him or aspects of his life as a burden.  Sometimes things are difficult and scary, but those things are small in comparison to the aspects of our life that are wonderful.

But I went through a few weeks of having trouble sharing anything, because my brain would go back to that weekend...where an adult woman pointed to Isaiah pushing himself in his wheelchair and saying "OH MY GAWD!! LOOK AT THAAAAAT!" while slamming her friend in the arm and pointing at Isaiah while shoving an ice cream cone into her face.... where then, not 20 minutes later, a little boy used the words scary and weird to describe Isaiah.

I think I wanted to share what happened with you, but I didn't because I was so bitter about it.  I went into a negative place.   I was unhappy with how I handled things (or didn't handle things) and I just didn't know what to say.  I felt I didn't know how to advocate for Isaiah, and I was so frustrated...

That?  She called my baby a "that".  The common sense part of my brain knew she was just surprised at seeing "a tiny baby" pushing a wheelchair, but the momma bear side of me fell apart and shook and was appalled at her reaction... and then it was like a one two punch when that little boy used such unkind words....yes, I know he was a child, but hearing those words to describe my son was painful. 

I know I can't control how the world responds to Isaiah, but I should know how to control my response to situations like these, and I was just so very disappointed in myself because I was just silent/angry (asking to speak to the little boy's mother...yup).

I am normally a happy person, who jokes and sarcastically responds to things...and in my dreams, when these situations arise, I'd reply that way, educating along the way as well, hoping to help the world accept different, everyone walking away feeling positive....and teaching Isaiah to respond similarly.

But when it involves Isaiah, I freeze!  I don't want to say the wrong thing.  I feel defensive and can't get past it.  I get hot in the face, my mind gets fuzzy, tears well up in my eyes, and geezlaweez!

So, that happened.  Maybe now that I shared it, I can get back to life as usual?  I know we are just beginning this journey and that I need to put my big girl panties on about it all....this is all such a new experience...and while we try to embrace things and live positively....sometimes it's all easier said than done.

We'll keep trying though; at some point, we're bound to get it right, right? It's very important to me that I figure out how to have a positive gut reaction, because I know Isaiah is listening to everything.

That was evident when he said "oh crap" when he dropped his pacifier on Saturday.  Yup. Time for everyone to stick with "ut oh" because that's much cuter coming out of my two year old's mouth... ;-)

Isaiah's First Wheelchair

During Isaiah's most recent PT session, Isaiah received his first wheelchair!  We took the time to make adjustments as needed and I learned all of the ins and outs of Isaiah's chair.  

We've spent the last few days getting Isaiah used to his new mode of transportation.

As soon as the belt and harness are clipped, he is rolling.  We just love how quickly he's taken to it.  He's actually getting mad when we go to take him out for rest times, but we want to work him up to using it.  We don't want to wear his muscles out.

We're working on wheelchair proofing the house and I've pulled up Isaiah's throw rug from his bedroom so he can even roll around in there...

It didn't take him long before he was getting into mischief....

Here is a picture of just his chair.  Over the last few days, we have noted a few issues that we'll bring up at our next PT appointment that involves the DME that provided the wheelchair.

I'm sharing this list of issues for fellow OI parents and wheelchair smarties, because I know some of you are thinking "uuuuum, that's not right.". ;-)  

-Isaiah is sitting too far back.  When the chair came, he was sitting perfectly, with his knees at the front of his seat cushion...but he couldn't reach the back wheels!  Hello, glorified stroller.  We immediately pushed him back so that he could reach.  

-You can't bring the wheels any more forward without them hitting the casters.  I plan to ask about smaller wheels, but when looking at the order form, 20" is the smallest I can get of this type of wheel.  Any experienced with the Tilite Twist and know of any other solution?

-The harness is too big.  The DME is working on bringing a smaller one to our next appointment with him from a different type of device.  If it doesn't work, I plan to ask about a chest belt.  He needs that type of support right now but hopefully not for too much longer.

-He can't reach the foot plate.  At all.  Yup, we know.  We're brainstorming a solution for that, but it's not completely a worry as it doesn't seem to bother Isaiah. 

-There's extra parts on there, adding weight.  I know.  We haven't gotten brave enough to take things off just yet, but we'll likely be removing the arm rest brackets (since the arm rests are too tall for Isaiah when they are in place), the wheel push rims (since Isaiah can't reach them and just pushes the tires), and a few other odds and ends.

-Isaiah can't reach the brakes.  He needs extenders, but since he's so young, he wouldn't be able to control them anyway, so that's an issue for when he's older.

That looks like a lot of complaining to me...

But we love the chair!

-We love the head support.  It's perfect for Isaiah to rest his head as he needs it.
-We love that he can reach the wheels and that he does so comfortably.
-We love that there is just one, easily removable push pole so that we can pull it off so there's no obvious way to push him ourselves, giving him the freedom to move on his own.
-The Jay cushion is fantastic.  It's so cushy and wonderful for Isaiah.  And the belt and harness are padded too!
-It has light up casters, which are just adorable.

And best of all, freedom.  Isaiah is free to roll around wherever it's safe...and it is just amazing.

Isaiah has conquered needing oxygen, a 24 hour a day c-pap, a feeding tube, hydrocephalus (conquering in progress, lol), and more, and he's taken on this wheelchair with some major gusto...

Isaiah's First Wheelchair from Vicky Martin on Vimeo.

<3