Lightning Wheels

I've been holding this post hoping to get more and better pictures but as the season comes to an end, I thought I should just post a few anyway.

Joseph has been participating this spring on the Lightning Wheels Team based out of Children's Specialized Hospital here in New Jersey.  The team is one of the two local paralympic sports clubs in the area.  Before Joseph started with this team I was a little hazy on the difference between the Paralympics and the Special Olympics.  There is a bit of crossover and the two organizations (from what I've seen) have a friendly relationship.  The two big differences are in the disability of the athlete and the type of competition at higher levels.  The Special Olympics are geared for those with a primary diagnosis of cognitive or developmental delays.  The Paralympics is for those with a primary diagnosis of a physical disability.  There are athletes who could qualify for both organizations, obviously.  A second difference is in the approach to sports.  The Special Olympics aims to enrich lives through sport and all are welcome.  The Paralympics require athletes to qualify to compete at a high level--this is the organization you see on television immediately after the "Regular" Olympics every two years.

Fortunately for our not-very-athletic family, the local clubs allow kids to participate even if they aren't planning to qualify as elite athletes--or, at least, our local club does.  The kids are pushed hard to surpass their personal best records but in a very friendly environment.  There are about 25 kids who turn out each week to run heats on the track, and throw discus, javelin, and shotput.  Since the age range is 5-22, there are very few even matchups.

Joseph went to one of the three meets this year (we opted not to try for Nationals qualification this year).  Races are run against other kids who are the same gender, the same age range (under 11, in Joseph's case) and a similar functional level.  Joseph's main competition is a six-year-old boy on his team who also has spina bifida but is able to walk with crutches.  His family practices a lot and are very competitive but Joseph managed to beat him in the 100m race at the meet which was pretty exciting.

(Joseph waiting for his turn to do his throws while Rosie hangs out in the front-carrier.  The other kids have a blast running around at the practices.)

There are two main groups of kids: ambulatory and non-ambulatory.  And they are further divided after that.  Many of the kids with spina bifida have excellent strength and coordination in their arms while the kids with cerebral palsy often don't, for example.

The throwing events are done from a platform in an attempt to level the playing field.  This picture is Joseph completing a personal best shotput throw.

It's been a really, really fun season for Joseph and it's been great for Eric and I to get to know some of the other parents a bit.  I have to say, after a season of one kid doing one sport, I'm not sure we're going to encourage the other kids to take up organized events.  The running around felt like a huge drag on family time.  But, most likely, we will opt to participate with Lightning Wheels again next year.  During the off season the kids have a chance to work with a trainer at a local gym once a week and we'll be continuing with that as well.  

Fun With Shunts

Those of you on Facebook got to see a glimpse of our minor medical drama this week.  I thought I'd elaborate a bit for those of you interested in exactly why we were so worked up over what turned out to be allergies.

Most kids with spina bifida--about 95%--develop a secondary condition known as hydrocephalous.  This is sometimes known as "water on the brain".  Basically, all of us have something called cerebro spinal fluid circulating through our brains all the time.  Kind of like oil in an engine, I guess.  Hydrocephalous develops when the fluid is unable to properly drain from the brain and get backed up causing swelling.  This used to be a huge problem and, I believe, the main cause of death in children born with spina bifida.  Fortunately, doctors have discovered in the last few decades how to "shunt" the fluid out of the brain using a valve and flexible tubing.  The fluid is drained into the abdomen where it is absorbed by the body.

Joseph had a shunt placed at birth and, actually, the first one never worked all that well.  Some of you may remember that he had a lump on the side of his head for the first few months of his life.  Once Joseph was five months old one of our neurosurgeons basically gave the other an ultimatum and we had it "revised".  It was a simple procedure and Joseph was home that day.  And, actually, there was a very minor complication that required a follow-up surgery the next day which also went fine and we were also allowed to go home after a few hours.  It's never fun to hand your child over to anesthesiologists and surgeons but, as brain surgery goes, it's not so bad.

Since then, we've had no problems with Joseph's shunt, but the threat is always there.  The first few weeks after surgery there is always a threat of infection.  Later on, there is the worry about the valve malfunctioning or wearing out.  And, despite the fact that plenty of extra tubing was included with the original shunt, there is the chance that Joseph will outgrow it one day.\

How do you know when the shunt is failing?  Well, that's the tricky part.  The symptoms of shunt failure can include headache, vomiting, irritability, personality change, sleepiness, vision problems.  Basically, lots of things that could be totally innocuous or easily explainable symptoms in most kids.  Some shunt failures present with all the symptoms.  But we also once met an adult patient at the hospital waiting for her shunt to be repaired.  Her only symptom was "a little nausea".  So, sometimes it's when you have just one or two of these symptoms and no other explanation for them that you get the most worried.

Sunday night Joseph complained of pain behind one eye.  Normally I'd think, "sinuses."  But his head didn't hurt, his nose didn't hurt, he wasn't sniffly or coughing or sneezing or anything.  Just eye pain.  Monday morning it was worse so we called the neurosurgeon.  He said, "It's probably nothing, but . . ."  You don't want to mess around when your brain is on the line.  He directed us toward our opthamologist who could take a look at the optic nerve and said we'd follow that with an MRI and an office visit and, if necessary, surgery to repair the shunt.  Despite the fact that we've been through this before, it's not something we look forward to.  Joseph, fortunately, is an incredibly laid back kid.  In fact, the fact that he was even complaining about his eye is what had me the most concerned since he never complains (except about chores and school).

Our fantastic opthamologist tacked Joseph on after his last appointment of the day and checked things out.  The verdict:  he has allergies.  Why he has no other symptoms is a mystery to us but we are confident in our doctor's ability to assess things and there was no pressure on the optic nerves which would have indicated pressure in the brain.

I'll try to get up another update soon (with photos!) of Joseph's new chair.

The Freewheel is here!

The Freewheel is here! We've actually had it for about ten days now and we are loving it--the entire family. There is definitely a bit of a learning curve; even small adjustments to a wheelchair require a period of readjustment. But on the whole we are all very enthusiastic about this contraption. Joseph used to handle standard city sidewalks with relative ease but now he positively flies down them.

He and Margaret race to Mass every morning now (she on her bike). Joseph doesn't balk and flinch coming down every curb break wondering if he's going to face plant in the street. He's started to experiment getting up and down curbs on his own and, when he's hesitant, we can easily get him up and down large curbs ourselves without stopping to adjust his anti-tip bars and then bump him up and down backwards.

Eric took the kids to the farm last week to pick up our milk and eggs. We've been going to this farm for a couple years and it's always been sort of a bummer because Joseph can't really get around and see much of anything. He's always said he wants to be a farmer and we've sometimes gently pointed out that wheelchairs can't really get around that well in fields. This trip to the farm was completely different. He bumped himself right up into the farm store and then tooled around with the other kids looking at animals. He handled the gravel, he went up and down grassy hills. It was awesome.

We take walks in the neighborhood as much as we can after dinner in the summer. Last night Joseph was able to wheel onto the grass with the other kids and try to catch fireflies. We haven't been to the beach, yet, but we may try that soon. Exciting times.

The Best Birthday Present Ever

After a delicious breakfast this morning the whole family packed in the car and headed a bit south to the New Jersey Abilities Expo. This is a four-day annual event that we missed last year due to travel so we were excited to check it out. We weren't sure what to expect but since it was free of charge we figured there was no harm in stopping by.

The atmosphere was great. It was nice to see so many wheelchair users including lots of happy, healthy adults with similar mobility as Joseph. Every exhibitor was great (including some great wheelchair-bound professionals) and, of course, it was all very wheelchair friendly. Even when Joseph and William managed to team up and plow a power chair through a couple of exhibits there was nothing but good-natured chuckling.

We found several exhibits that we expected and were looking forward to. Many car companies had accessible vehicles on display. We saw lots of configurations for rolling into vans and heard a bit about adapting cars for hand controls. That's a few years down the line, of course, but it's nice to know what's out there. We stopped by a few bathroom renovation tables to pick up information. That project isn't imminent, either, but eventually we hope to have a roll-in shower and roll-under vanity on the main floor. We even happened across the vendor who consulted with us on Joseph's wheelchair and he made a couple of significant on-the-spot adjustments for us.

Then we happened across what I'm starting to think might be the Best Birthday Present Ever: the FreeWheel. In short, FreeWheel is a portable, removable third wheel that you clip on to the front of your chair. That might not sound so impressive so let me back up a little.

Joseph's wheelchair is a fantastic machine. It's really a state-of-the-art manual chair. Wheelchairs are designed with the two large wheels that the operator pushes and then two front casters down next to the footplate. The casters keep you balanced and they swivel and all so they're great and totally necessary . . . as long as you are on a nice, level surface. If those casters hit even a very small bump at any speed the entire chair pitches forward and the operator is either thrown out or, in Joseph's case, suspended in his chair with his face planted in the pavement. Joseph has dumped his chair many times and we are glad that the only injury he has sustained thus far is a scraped chin. But it is a terrifying experience for him (and for me). And it takes some work to get him upright again.

Joseph deals with this caster problem pretty well. We walk around our neighborhood every day and often go out for all day jaunts in New York City. Joseph has gotten pretty good at paying close attention to little bumps in the sidewalk and he just pops a little wheelie to jump the bump. Most of the time this works fine but it means that Joseph uses a lot of energy paying attention to the ground (especially in a new setting) and not as much paying attention to his surroundings. And we we are often stuck at a street crossing with crowded or non-existent curb breaks which means that Eric has to manually bump Joseph up and down. If I'm on my own with the kids this situation can be dangerous if I'm trying to keep an eye on the other three, get a stroller out of traffic and get Joseph up and down a curb. Let's just say I don't take all four kids out on my own all that much.

And then there's the problem of all the "non-smooth" surfaces. In our own neighborhood there are cobblestone driveways or patches of sidewalk that are impossible for Joseph to wheel on. Grass is nearly impossible. Gravel is impossible. Sand is impossible. Going on a trail in the woods is impossible. Ice and snow (even a little bit) is impossible. There are so many places we simply don't go because they aren't wheelchair friendly.

We've known for a long time, of course, that you can get three-wheel bikes. The problem with these is that they are high-end racing models and they are completely impractical unless you are actively working out. You wouldn't, for example, commute to a friend's house in one of these because they'd be impossible in a house. They are also outrageously expensive. What to do? Eric has been brainstorming for awhile how to jerry rig some kind of bicycle attachment to the wheelchair. But someone beat him to it. Check out this video:

Now, an important disclaimer. This wheelchair user is obviously very physically fit and in the prime of his life. Joseph won't be doing quite all those things. But let me emphasize that every single thing pictured in that video is impossible or very nearly so even for that guy without the FreeWheel. If you go to the FreeWheel website you can see other videos--including some of kids--and read more about this.

And the best thing, as you saw in this video, is that the wheel is completely portable and removable. You install a small perch on the back of the chair and the five-pound wheel hangs securely. When you want to use it, you just detach and clip it on to the footplate. The entire round trip is less than a minute. We talked for a long time with the inventor (a quadrapalegic dad who wanted to play in the yard with his kids) and we are extremely excited about this. We couldn't pick one up today because they attachment mechanism needs to be custom-built for a child's chair but we will be calling the measurements in very soon.

I don't think it is an exaggeration to say that this could be life-changing for Joseph.

As for what Margaret and William got out of the Expo, they call these their "I Love Joseph" tatoos (don't worry, they're temporary):

Thanks to Robyn for the "rugged, dirty boy pictures".

Sprucing up the Place

Ouch. Has it really been over a month since I last posted? Is anyone still reading?

We've been busy here surviving the last few weeks of winter and enjoying the spring (summer?) weather. I don't have any pictures to prove it but we had a wonderful Easter spending Sunday with a priest friend in Manhattan. We went to a fabulous Mass with wonderful music and then took a long walk in Central Park with about 4 million other people. We have a real knack for picking the most popular holiday destinations--we went to Rockefeller Center and St. Patrick's Cathedral on Christmas Day.

At home we've been busy making our house work better for us. We briefly considered aggressively pursuing home ownership because we'd love a home that works really well for Joseph. But we decided instead to save up for awhile and make our current rental work better for us. We love this house and its location so we don't mind staying put for a bit.

Our biggest problem was that the kids were sleeping upstairs. Joseph is getting too heavy for me to carry up and down stairs and we want his bed and clothes and everything to be more accessible to him. We suggested to him that he could sleep downstairs in what we'd been calling the "playroom" which is right off the living room but he didn't want to sleep alone and we couldn't figure out how to fit two beds in there given the constraints of the piano and our "fireplace" (hating that thing more all the time!). It finally occurred to us to try bunk beds. We hemmed and hawed about Margaret being on top but finally decided to go for it. They were a big hit with the kids.

The beds were plain, unfinished pine. I don't particularly care for light-colored wood and they were getting grubby fast. I spent last weekend finishing them and I'm pretty pleased with my first try at staining and coating wood furniture.

Before:

After:

I think it's a big improvement and I'm excited to try my hand at some more wood-working and home improvement.

But, first . . . .

Putting the kids bedroom right in the main living space (there is just a double doorway separating this room from the living room) is awkward for using the living room in the evenings and it meant losing our "guest room." The futon is still in the kids room. We were also left with an empty upstairs bedroom. We moved our bedroom into where the kids used to sleep. It's a bigger room and the design works much better for us while William is still sleeping with us. There is room for our king-size bed, a toddler bed, three large bookshelves and two dressers. The room at the top of the stairs we turned into a sitting room with some on-sale IKEA chairs:

The braided rug was made by Eric's grandmother (Eric's mom made the one in our living room) and the bookcase has been around forever. I'm hoping to refinish it with the help of my new power sander :) The coffee table came to us courtesy of bulk trash day. Twice a month the city will collect anything you leave on the curb and one morning we were headed out to Mass and saw that our neighbors across the street had left out this perfectly good coffee table. Our furniture budget was maxed out after the beds and chairs but this room really needed something. Eric almost broke his back hauling this wood and metal piece up our stairs but it works pretty well.

Also gracing this room is the antique roll-top that has been in my family forever (and that door goes to the stairs):

And Joseph's old bed:

We intended for Joseph to use this bed on his bunk but when we tried it out we discovered that it was about one inch too long. I don't think it's an official "extra long." It was given to us by someone from Canada. I made a bunch of nice pillow covers for all our spare pillows and put a king-size fitted sheet around both mattress and box spring and it passes for a day bed. That's pretty much our only closet there to the right.

This big rearrangement actually makes us more guest-friendly. We can now have a single guest sleep in this upstairs sitting room. Or, if a whole family visits, we can move to the futon in the kids room and offer the entire upstairs to guests. I know you all loved that futon but I hope we can make it up to you somehow on your next visit.

Eric made me promise to finish making curtains before tackling any other furniture re-finishing/building projects. We have horrible vertical blinds in our house. They are so popular in this neighborhood but they are definitely not our style. I've been replacing them with simple curtains in most of the rooms in our house. The top picture in this post is our new kitchen windows. I have only our bedroom left to do. It's nice to make this place our own a bit more. And maybe all these projects will get me posting more often.

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.

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.

Big boy!

We got this really snazzy high chair for Joseph a couple of years ago because we figured he needed good, longterm support with a footrest and everything. This chair is sort of infinitely adjustable and holds up to 150 pounds. Joseph used it a long time while he was still in the highchair and tray stage. It used to have a sort of infant guard around the torso that the tray attached to. It was a pain to get Joseph's legs in and out of the foot holes and, much to my dismay, the infant guard didn't fit under the edge of the table. I tried taking the infant guard off but he just didn't have the bodily awareness and balance to sit in that chair without some extra support around him. So the only way for Joseph to continue to use the chair would have been with a tray and that seemed inappropriate. He's really ready to be up at the table with us, and so he has been. When Margaret got big enough for a highchair we put her in Joseph's and moved Joseph to the plastic booster seat.

But it's always bugged me that Joseph didn't have a footrest. It's really not good for his legs to just dangling. Also, the booster seat with tray is a better highchair and I was always putting Margaret in it. And now Margaret is wanting to be more at the table than a highchair allows. We've been talking to Joseph's PT about getting him a different seat that meets our needs.

Today I was cleaning and pushed the wooden chair (which had been adjusted for Margaret) up to the table and was surprised to see it slide under the table, even with the infant guard on it. I guess in this new apartment the floors are just enough uneven that there is a little wiggle room. As soon as Joseph woke up from his nap I brought him out to readjust the chair for him. I noticed that he seemed a lot more secure in it and, on a whim, I took off the infant guard. He didn't flinch. I moved the seat around a bit and the movement didn't throw off his balance at all. I'm so proud of him. He's really growing and learning. And now he has the kind of supportive chair he needs, and it pull right up to the table. Margaret has happily moved to the booster seat.

These little things make me so happy.

The Walker

Speaking here about both the piece of the equipment and the boy!

Joseph has had a really rough week with therapy. I was even considering changing his schedule to only one day a week because he was having such a hard time--lots of crying, and refusing to do anything Shannon asked him to do.

But, then, he asked to go in his walker today and he's suddenly making real progress around the room. He doesn't walk as fast as a typical two-year-old, but he can go about as fast as Margaret. I think his newfound speed is really encouraging. The walker has become a useful tool, now, not just something we use for therapy.

I'm hoping that the walker can become more typical for him to use around the apartment. Since our space is so small, it might become manageable, and things are more accessible to him, for the most part. School kids, for example, often use a walker around the classroom but a wheelchair to change classes.

The wheelchair is definitely a big hit when we're out and about. We've bring it to church every day, now, and we've also used it at the grocery store, the library, and on the Metro. The independence is so good for Joseph socially--and a lot easier on me!

Shannon has worked with him on a lot of different "gait styles". He's sort of shuffling along here but he sometimes takes more traditional "steps" and sometimes hops with both feet off the ground at the same time. This method is getting him going fast, though, so I think he likes it. He was on a mail truck kick when we took this video, so he starts talking about that at th end--sort of a non sequiter. I couldn't get another good video tonight, and thought you'd all appreciate this up us as soon as we had it.

And, at the rate Margaret is going, maybe I'll have another video to upload before too long!

Potty training!

At the risk of my son one day needing therapy because of this blog post, I'm going to dive into this, because it's a topic that lots of people wonder about, and few people have the courage to ask about.

Most people know that spinal cord injuries affect a body from the bottom up. If you hurt your spine down low, you lose feeling in your feet. If you break your neck, you become a quadripalegic. But actually, the first thing to go when the spinal cord is injured is bowel and bladder function. All kids with spina bifida have bowel and bladder problems to varying degrees even if they have no other physical problems. In fact, we've been told that the greatest threat to Joseph's long-term health is kidney failure, if his bladder doesn't get emptied like it should (and we thought the tube in his brain was a concern!). Bowel management is highly individualized and varies greatly. I won't go into that here. Bladder management is often very simple, however, and we began that adventure yesterday.

We all took a trip to the urologist's office to learn a procedure called "Intermittent Catheterization." A catheter is a very thin, very flexible tube inserted through the urethra into the bladder so that the bladder can be completely emptied. Eric and I were both pretty anxious about learning how to do this and we were concerned about effectively prepping Joseph. We told him, "Tomorrow we're going to the doctor and they'll show you how to pee like Daddy." He ate it up and was excited all morning.

The visit was all-around wonderfully positive. Inserting a catheter is about as easy as can be. Eric and I both learned in less than five minutes. Joseph thought it was great to be able to pee like a big boy. This is a major leap forward in quality of life for the whole family. Previously, Joseph was in diapers and would leak urine very unpredictably. We would never know if he was about to drench a diaper and his pants and whatever he was sitting on. It was pretty stressful for all of us. Now, every three hours, we "cath" him, empty the bladder, and he's dry in between. That's the goal, anyway. The nurse told us to give it a couple weeks to make sure he can stay completely dry in between cathing. Some kids need to cath more often and some kids do need medication to help them stay dry.

But, Joseph is really loving this and we're helping him to participate in the process as much as possible. Most intelligent kids can learn to cath independently. Our doctor has patients as young as four who are completely independent. And, consider yourself warned, if you are someone who ever takes care of Joseph for more than a couple hours, you will need to learn to catheterize. It is not gross and it is not difficult and it is very important that Joseph not get the message that there is anything to be grossed out about. It's very simple and there is nothing very "medical" about it--it's not even sterile!

So, obviously I don't have a picture for this post! Here's a cute one of Margaret enjoying some incredibly crumbly cookies I made yesterday.

Bicycle

Joseph's physical therapist ordered him a hand-powered tricycle. Now that the wheelchair has finally arrived, all we ever here from Joseph is, "We should go get my hand-powered trike." He's had a chance to try one out at the hospital a few times. The handlebars, you'll notice, look something like one of those hex keys that come with furniture in need of assembly.

I left such a tool lying around after a long, futile attempt at highchair reconstruction and Joseph found it. I was busy doing something and was only half paying attention as he kept saying, "Mommy, I'm riding a bicycle." Finally, I looked more closely. He had hold of each end of the hex key and was turning it around and around while crawling with his elbows. Strong kid! And imaginative. Hope the real thing arrives soon.

Wheelchair!

It's finally here. After six months of waiting I think it was all rather anti-climactic for us. We wanted to get pictures up right away but technical difficulties combined with very busy life delayed things.

First, Joseph. He loves the chair but it took a couple days to get there. It goes VERY fast on hard surfaces which is a bit frightening. When we're out and about he doesn't stray more than a few feet from us--at least not yet. In the apartment he is very comfortable, partly because our thick carpeting makes the chair almost impossible to maneuver. He can do it, though, and he's discovering lots of fun things that were out of reach before. The mobile stander gets him up high, but he can't lean out of that very easily to get a book off the shelf, for example. He's learning to get in and out of the chair from the floor. He can get out pretty well on his own by just scooting his bottom forward and sliding down. He still needs supervision, but he can't unbuckle his seatbelt independently, so we always know when he's going to be jumping down. He's sill building the muscles needed to climb in and once he has that down he can learn to transfer from the chair to the couch or his bed.

Second, the rest of us. It's a big adjustment all around. We've taken him out a bit to public places. Reactions to seeing a two-year-old in a wheelchair have ranged from curiosity to looks of horror to pointing and laughing (loudly). We're trying to take it all in stride. The small front casters on the chair light up pretty wildly when the chair goes fast, so we assume people are laughing at that. I think it will be a long, long transition to Joseph using the chair all the time. Partly, he just doesn't have the stamina to wheel himself all the way to church (which isn't far) and he doesn't have the awareness to not crash into people. We're still working on, "Don't run over your sister." Also, we have a very pedestrian lifestyle now, and taking two kids out with Joseph in the wheelchair means Margaret always on my back and limited ability to carry anything else (like groceries).

Finally, because I know some of you are very curious about such things. The chair is made of titanium and is lightweight--until you add on all the features a wheelchair needs (like a seat and tires). It weighs about 25 pounds. It comes apart . . . sort of. We've found that putting in the trunk in one piece is easier and takes up less space (though we may have to look into buying a station wagon before our next trip to New England). The chair has stroller handles for pushing that come off easily. The chair could last 3-5 years--which is good because a new manual wheelchair costs roughly the same as a new compact car.

Good things in Joseph's life. The braces and walker are progressing as well. A hand-powered trike is on its way. Yesterday we were at our semi-annual all-day appointment at Children's Hospital where Joseph got a clean bill of health. We almost saw Queen Elizabeth. We had great seats, but had to leave before she arrived to go to our appointment. But, we were only a few feet away from her all afternoon. Oh, well.

Long leg braces

Here is the latest orthopedic toy for Joseph! We've been waiting for these braces for a few months and they've finally arrived.

These braces consist of big, blue, plastic "ski boots" that fit over his shoes (which fit over ankle braces). There are metal bars running up the sides to a leather pelvic band, which is under his shirt in these pictures. There are locks at his knees and hips to keep the joints from moving, although we only lock his knees.

The idea is for Joseph to shift his weight from side to side allowing the brace to swing his leg forward. This type of brace is less automatic than an RGO (which, I believe is what Sarah recently built). The absence of the automatically-reciprocating mechanism makes the whole brace much lighter and less-expensive. It is much better if Joseph has the muscle strength and function to use these.

It looks like he will be able to learn, but it is a slow process. The brace does not provide as much support as he is used to, so a lot of energy is required. He also has a loaner walker now while we wait for his new one to come in. The loaner is pretty old and has four simple wheels instead of automatically braking wheels. This means Joseph falls down pretty easily--no help to his confidence!

He mostly enjoys it, though. We'll see how these fit into his life longterm. Some kids really take to the long braces and use them for daily activities, reserving the wheelchair for longer trips. Some kids like the wheelchair better and use the braces only therapeutically. We'll see what Joseph likes better.

The other person in the picture is Joseph's awesome physical therapist, Shannon.

Wheels!

Joseph's physical therapist arrived this morning with a special surprise--a mobile stander. Shannon (the therapist) has been working with Joseph in his standing frame, which is totally stationery. She saw that Joseph was clearly ready to be moving--a standing frame is pretty boring for a two-year-old! Equipment is expensive and time-consuming to order, so Shannon found this mobile stander to loan to us until we leave Washington or Joseph grows out of it. It comes with all the physical benefits of standing--improved circulation, respiration, digestion; developmentally appropriate--and has the major added benefit of being fairly easy to move around.

The stander has lots of disadvantages compared to a wheelchair. It's much heavier and therefore harder to push, especially on our carpet. It's not as portable--it won't collapse and Joseph can't be moved while in it, so it probably won't leave the apartment much. It's also not custom-built for Joseph, so the height of the wheels is just slightly too low.

Despite all that, Joseph took to it right away. He would be glad to stay in all day, but that's not actually very healthy, so we've had to remove a very sad boy twice already. Eric's trying to get Joseph to nap a bit now.

Joseph, while excited, is pretty overwhelmed by it. The wheelchair has loomed large in his imagination for a long time and especially since he was fitted for his in early December. We expect it to arrive in a few weeks, and the stander should be a good distraction in the interim.

It's extra fun for Mommy and Daddy, too, on this day of penance. Joseph learned pretty quickly how to turn around and get around obstacles and, of course, wants to be able to wheel into every room in our small apartment. We want that, too, so we have to rearrange pretty much all of our furniture to make that happen. Should be interesting. We may start the pre-move downsizing sooner than planned! Anyone want a table? Couch? Bed? (Just kidding about the bed).