Monday, May 19, 2008

Speaking of Joseph and his mobility

I've been meaning for awhile to post about Joseph's new long leg braces. They aren't all that new anymore, actually. I think this set arrived shortly after Christmas. You might remember that his old set of braces were very non-mechanical. The hope was that he could use the trace muscle control in his hips to move his legs forward without any mechanical assistance. Joseph made off-and-on forward progress with that set of braces. Last September when I posted a video of Joseph in those braces was pretty much the peak of his ability with those. He was also outgrowing that set so we met with his doctor and therapist to think about other options. We decided to go with a Reciprocating Gait Orthotic (RGO). (If you follow that link, note that Joseph has the isocentric design). The RGO is mainly different in that there is a joint on the back, pictured here:

The joint automatically swings the left leg back when the right leg moves forwards and vice versa. This means that Joseph can more or less just lean to one side and the mechanical motion gives him a lot of help advancing. This brace also lacks the "moon boot" design of the old set. These have a molded plastic piece that fits inside his shoes and attaches to metal pieces on the side of his leg. Joseph has lightweight ankle braces he wears all day long when he's not in his RGO so this is just the same thing all in one piece.

There is still a steep learning curve. We are very far from taking this brace out to use in public but Joseph can get across the room fairly easily using his walker. It's very wide and has a large, slow turning radius so it isn't all that much fun for him but he's usually willing to try it out for a few minutes.

Shannon, his therapist, also has Joseph working on walking with crutches. The crutches were actually Joseph's idea several months ago. He saw a kid at the hospital using crutches and wanted to try it himself. Typically, kids don't start with crutches until at least age five but Shannon wanted to go with Joseph's interests and she brought him some. Joseph was doing such a fantastic job with them this morning that I was able to snap these pictures. All he is actually doing here is standing unsupported but that is a huge milestone for him. Obviously the crutches are much less stable than a walker with four wheels and a wide base. Every little movement throws off his balance. But he did it. He stood for several minutes on his own this morning. He can walk around using the crutches if he gets a lot of assistance.

Progress is slow, but mostly steady. It is unlikely that Joseph will ever use braces and crutches for everyday mobility but they are very valuable as a therapeutic tool and he may find that he likes them better for around the house or around a workplace in the future. And they provide a lot of entertainment for Margaret who wants to be just like her big brother.

Sunday, May 18, 2008

Wheelchair Update

"Smile, Joseph!"

Most of our family have had a chance to see Joseph in his wheelchair but many readers of this blog live far away and we missed our usual pilgrimage to the Midwest last year so I thought I'd offer an update and a few reflections on Joseph's mobility.

Part of the reason I'm inspired to write is that we always prepare people for seeing Joseph on wheels for the first time by saying something like, "He does really well. He's so good at maneuvering and so fast. Wait till you see him." When we say this the other person smiles and nods and says, "Uh huh." Then they do see him in person and say something like, "Holy cow! What an amazing kid! He can really do it!" You really have to see it to believe it. And, unfortunately, you don't see it much. There are not very many paraplegic three-year olds with the cognitive ability to power a wheelchair. There is an amazing wheelchair-accessible park out in the suburbs in Virginia where we've been several times and we've never met someone like Joseph. He is amazing.

We've had the chair for just about a year, now, but last summer was a challenge as we got everything adjusted correctly and we've only had it permanently since August. Joseph learned quickly how to operate the chair and has continued to amaze us as we watch his strength and skills increase. He can easily wheel himself four or five blocks in our neighborhood if we aren't going uphill. He still needs help crossing streets safely but I imagine that most three-year olds do. Joseph can wheel up and down ramps. He's a bit slow going up but he always wants to do it by himself and he always makes it. Going down is even more fun: he lets his wheels go until he's going incredibly fast and then grabs them at the last second--simultaneously braking and making a 90-degree turn at the bottom of the ramp. He does the same trick coming into our kitchen. He zooms down our long hallway and comes careening around the corner into the main room. He can also do small bumps and slightly uneven ground himself. On the sidewalks we use all the time--at our house, in front of church, etc.,--he knows exactly where the uneven spots are and knows the easiest path. He can pop (small) wheelies to get over an obstacle that is an inch or two high.

Lawns are still a challenge. We've been to the Arboretum here and Joseph did have fun while we picnicked with friends but only because one of the other girls thought it would be fun to push Joseph around all morning. Between her pushing and Joseph wheeling they got around fairly well but I still had to go rescue them several times. While we were visiting CUA to see Pope Benedict Joseph was off on his own playing with some other kids and hit a dip in the lawn. If he were standing we would have said he'd gone head over heels. He was fine but it was scary.

This is one reason, by the way, that we love city living so much. A yard is not all that beneficial for Joseph. We'd much rather live someplace with wide sidewalks and other interesting paved areas. Our favorite activity lately is to walk Daddy to the Metro where Joseph can watch a building under construction and zoom around on the huge Metro plaza.

We take the wheelchair with us pretty much everywhere we go. The exception is if we're truly just "going for a walk" and don't intend to let either kid out of the stroller. Our double stroller is much easier for me to push so we still use it a lot when we're just out for some fresh air. Needing to take the chair has crimped our pedestrian lifestyle, somewhat. For example, I used to take Metro to get to the library but pushing the wheelchair, carrying Margaret on my back and carrying our library books proved to be too much for me. We've been driving more than I like for the past several months. That is starting to change as Joseph's wheeling abilities grow. We're trying to find places to go close by where Joseph can wheel most of the way himself and both kids can have a chance to get their wiggles out. We also try to meet friends around town regularly. One favorite destination is the National Gallery of Art. Joseph does like art but I have a feeling that his favorite part of that museum are the huge expanses of uninterrupted smooth marble floor. We've been yelled at by guards (even though Joseph has never bumped anything) who then stand off to the side and just stare in awe as Joseph zooms around spinning in circles and never bumping anyone or anything.

Not that he's a perfect angel. We have to remind him to look out behind him all the time. The handles on the chair are removable and we have them off as much as possible because they stick out really far and are a real hazard in crowds. He's also not very good at following voice commands such as, "Joseph! Stop! There's a car coming!" We have a lot of work to do in the traffic safety department.

The best thing about the wheelchair, by far, is that we get to go to the head of the line everywhere we go. I'm just kidding. The best part is that Joseph can interact socially in a very age-appropriate way. On Sunday mornings, for example, we head down to the parish hall for donuts and coffee. Joseph eats half a donut and then takes off to play with the other kids. He can chase them and run from them and get right up to them at eye-level and he has a blast. We went to IKEA last weekend and Joseph decided he was an ice cream truck driver and gave out ice cream cones to all the other customers. We love to watch him be a regular kid.

There are challenges, of course, to having a kid in a wheelchair. The chair takes up half the space in our trunk. Our apartment is too small for us to give Joseph total access to toys and materials. He can't carry things very well (though he's getting good at one-handed wheeling). He's getting almost too heavy for me to lift--but we're working hard at teaching him to transition in and out of his chair to various surfaces. But mostly Joseph is just a normal kid with a very cool way of getting around. We've found that, on the whole, fitting a wheelchair into our life requires far less effort than we thought it would.

This post has been sitting in my drafts folder for awhile because Eric told me I couldn't publish a wheelchair post without some wheelchair pictures. But Joseph is hard to get while wheeling. I took some on an outing last week. We got together with our friends Emily and Andrew and the Bartel Family. Clare and Kate Bartel are good friends of Joseph and Margaret. Here they are watching a mama pigeon and her two babies:

Margaret, who is usually shy, clung to Clare the whole time the kids were playing:

And, finally, the whole group that evening. These friends have been our "A List" social network for the last six years. Andrew is moving to take a teaching job and we hope that we will be, too. We went out for a last hurrah at a favorite restaurant. The weather didn't exactly cooperate but the kids had fun in the light rain. These friends will be dearly missed.

Thursday, May 15, 2008

Ever wonder what Margaret actually looks like?

So did we. This is what we usually see:

My mom visited for Mother's Day weekend and Margaret consented to let Grandma put her hair up.

Look at that cutie! I couldn't resist putting up all three pictures.

Aunt Laura, a big favorite with both kids came for the day as well.

Tuesday, May 6, 2008


Doctorandus Eric Johnston.

Eric defended his dissertation yesterday afternoon. He was told that one is supposed to pretend to be at least a little nervous but he had no trouble summoning up actual anxiety for the occasion. He wasn't really concerned about failing--your board is supposed to make sure you don't get as far as the defense without a good product--but it is possible to fail. And, more, the five-person examination committee is supposed to be tough on you. They don't call it a defense for nothing.

Eric's committee, however, spent two hours telling him that he'd done excellent work and encouraging him to publish the dissertation. I brought the kids to campus and met Eric for the post-defense champagne. His committee was very complimentary of Eric and there was much joking about how relieved I must be. I've heard horror stories about what wives of Ph.D students have had to endure but I can't really complain. But I am relieved.

Joseph is calling Eric "Dr. Daddy" but the committee was very emphatic that Eric is not to be called "Doctor" until the degree is conferred which, unfortunately, can't happen until October. CUA does not have summer graduations and Eric missed the spring deposit date by three days. He already had convinced his committee to put an extreme rush on the defense in order to finish this semester so getting those few days really was impossible. One of the professors decided that the proper title in the meantime is "Doctorandus" a Latin construction meaning "to be doctored." And Eric wants me to be sure to note that the above picture was taken this morning as he left to give a final exam to his students. He dressed up more nicely for the defense.