Two quick pictures

My favorite baby stage:  re-shelve all the books every day.

Joseph is really, really interested in birds and a recent project was an attempt at a falcon kite.  It didn't work but I admire their perseverance.

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.  

Park Morning

Hey, it's time for my annual blog post!

I just made a new schedule for myself now that Catherine is sort of, kind of, once in awhile, sleeping or playing long enough for me to accomplish something and the new schedule includes blogging a bit.

We've been enjoying the mild spring days (the few we've had in between the rainy days).  One of the best things about home educating is getting to the park in the morning when it's relatively empty and the air is cooler.  The kids are really into climbing lately.  The top picture here is Gregory (3.5) at the top of a complicated, twisty ladder.  The other had been scared of it for awhile and one day he called me over and said, "I just climbed that."  I didn't believe him until he did it again.  Within five minutes the three middle kids were chasing each other up it repeatedly.

Catherine Rose is almost eight months.  We are still working our way through a list of potential nicknames for her but "Rosie" is the current favorite.  She is a maniac.  Constantly on the move and seldom sleeping.  She's pretty cheerful but I spend a lot of time chasing her around and picking "choking hazards" and making sure she is not about to fall on something sharp.  Our house currently has no carpeting and she's developing a thick skull.  She is happiest when standing but, as you can see, the little boys are always very nervous about her falling--even though this playground turf is much softer than our wood floors.

William is 5.5 and is really struggling to find his place.  He continues to swing between extreme sweetness and extreme storminess.  He can play equally happily with his younger or older brother, playing elaborate imaginative games with Gregory and building with physics sets with Joseph.  He has energy to spare and loves to race around the park on his little bike.

Margaret is 7.5 and really determined to master all the physically demanding parts of the park this summer.  She's been working on various sections of the climbing wall.

And teaching Rosie to do the same . . .

 
And she has now officially conquered the lower set of rings.  Eric and I marvel at this since neither of us could do this as kids.  She's working now on a much higher set.  I've been really pleased to see her patient determination with these since that is not generally characteristic of her personality.

A few days after the rings she made it to the top of the climbing wall.

How does Joseph keep busy at the park?  Sometimes by making up imaginative games, often by bird watching.  He is an avid birder and recently began a nature journal.  His first entry was a starling and he's looking forward to cataloging our entire park and journaling on our trips this summer 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.

Joseph's Birthday, a little late

Guess who finally forked over six dollars and bought herself a new cable to connect the camera and the computer?

We rearranged our "office" awhile back and my not-so-UniversalSB cable for my camera disappeared.  I'm sure I'll find it tomorrow now that I've finally replaced it.  In the meantime, we've been pretty busy and I'll try to catch you up a bit.

Joseph also requested coffee cake for his birthday breakfast but we held off on a birthday cake until his party the next night.

 

I think he's excited about the treasure hunt.  Not sure why Isaac rearranged the furniture.

Joseph is now seven and we  had a lovely time celebrating accordingly.  After the big shebang we had for Margaret I was hoping for something a little quieter for Joseph and he was fine with that idea.  We had coffee cake for breakfast on his actual birthday and fried fish for dinner (his choice).  The next day his best friend, Andrew, came over, as usual.  I planned a very simple "pirate treasure hunt" for them.  Honestly, I wasn't sure it would be blog-worthy.  I typed up six very simple clues like, "Where do we go when we want to read about Hammurabi?"  Answer:  his history text.

Retrieving a clue from Margaret's sweater bin.

Studying a clue in the kitchen.

 I was worried about making them too easy or too hard but I think that the following along of the game was what was most fun.  Joseph didn't have to think more than a few seconds about each clue but he had a blast "hunting" for his treasure.

Thinking hard . . . where could the last clue be?

Found it . . . but where's the treasure?

On a whim I also made a very simple map of the entire route and this turned out to be a hit with Andrew who loves anything in the in maze/map genre.  He took charge of the map, Joseph read aloud the clues and together they found the treasure. At the end, Andrew immediately made another treasure map and convinced Joseph to play again.

A treasure chest!

With treasure!

Since Halloween was a bust due to sickness and rain the "treasure candy" was a nice stand-in.

And how is our not-so-little seven-year-old?  Joseph spends pretty much all of his spare time either reading or drawing. The last few weeks he's branched out a little into creating 3-D toys out of paper.  He's been really interested in drawing various characters lately and is working on a whole crew of pirates to decorate his bedroom walls.  We love his drawings and it is really fun to see the evolution of his artistic sense.  I will try to scan and post some of his work before too long.

He reads voraciously and has inherited my tendency to be completely oblivious to everything around me if I have a book in my hand.  Now that I see how annoying this can be, I'd like to take this opportunity to apologize to my parents.  But, of course, we're thrilled that Joseph reads so much.  He likes everything:  novels, picture books, non-fiction of all kinds, poetry, magazines.  He'll even pick up the Wall Street Journal, in a pinch.  And, happiest of all, from my perspective, he's often very willing to read to his younger siblings.  He has a real knack for expression and nuance when he reads out loud.

So there's a bit about our most recent birthday boy.  More to come!

Sunday in the park, with garden

Sunday afternoons are so lovely. It's especially wonderful when we get up and out early enough to get to Mass at 8:30 so that we're home early with the whole day ahead of us. But what to do with that whole day? Typically we either take the train into Manhattan and wander around or go for a drive. Margaret was strongly lobbying for the latter this past Sunday. Eric pulled up a map and made us a list of parks we'd never been to while I put together a picnic dinner.

Making dinner has been a blast lately. Our garden is doing really well. All the lettuce sprouted but between our late start (we could have planted in mid-March) and slugs it was awhile before we got our first harvest. The slugs had us stumped for awhile: they'd emerge each evening just after dark and munch our young leaves down to nothing. After a bit of research we decided that hand-harvesting was the best bet. We--and by "we" I mean Eric unless the kids are up late--keep a slug stick stuck in one corner of our planter box. Each evening we head out, use the stick to pull off any slugs we find and drop them in a cup of salt water. I love animals but I love lettuce more.

Once we got on top of the slugs the lettuce went crazy. We've made lots and lots of salads and we just pulled out some bolted plants and started a second planting. We'll see how that goes. One of the lettuce varieties didn't do as well so we put some parsley in that space.

And we added a mint plant to one end although we hear that mint spreads so we might move that to a dedicated planter.

We also have cilantro and basil on the roof of our shed.

Between our garden and our weekly produce deliveries we've been eating well: lots of salad, lots of pesto, a yummy caprese salad for our picnic last night. We are definitely planting a much bigger garden next year. I never would have thought that container gardening would work so well.

But back to our Sunday. We opted to explore Palisades Park which is on the Hudson River, straddling the George Washington Bridge on the New Jersey side. It's a long, skinny park and it is very pretty but it is largely hiking/biking with some small marinas along the water. We were hoping for more of a "picnic spot with picturesque view." The first place we stopped seemed to promise this but after a few minutes we noticed that the water on the path was rapidly encroaching on our bench. Who knew the Hudson River was tidal?

We found a nice little picnic area and enjoyed our dinner. We are still loving Joseph's FreeWheel. It's great to see him getting around on sloped, bumpy, thorn-riddled terrain.

And here's a couple shots of my new haircut, courtesy of me. I've tried a couple hair salons since leaving Minnesota and the results was always a bad hair cut and less money in my wallet. So I did a little googling, got out my scissors and had at it.

I needed to do a couple of rounds over a day or two to get close to what I was going for but I'm pretty happy with the result. And it was free! Can't complain about spending zero dollars on a decent haircut. Eric has proclaimed it the best haircut I've ever had.

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".

After breakfast

Joseph can't stop reading.

And the other two are close on his heels.

Last Minute Halloween

We've never done much with Halloween in the past. We don't have too much against the holiday, we've just never made much of a priority of dressing up our kids and sending them out for days' worth of sugar highs. And, oddly, we've never lived anyplace where trick or treating was a big deal. In our neighborhood now there are hundreds and hundreds of kids out but they only go to businesses.

This year the kids suddenly "discovered" Halloween and just last night started talking up the complex costumes they were hoping to wear today. We decided that a bit of holiday fun was in order so we came up with some last-minute costumes.

A very scary ghoul:

This picture does not do justice to my amazing face-painting skills. At Joseph's direction he had red and yellow eyes, a green mouth, and black face.

A fairy princess:

The dress is courtesy of Aunt Laura and, again, you can't really see Margaret's very sweet and glittery face here. She was so excited to wear a whole face-full of real makeup and wants to go to church like this tomorrow for All Saint's Day.

And a sad dirty bum:

He was sad that Eric wouldn't let him play with the dirt longer but he cheered up once he realized that we were going for a walk to get candy. William was completely unfazed by Joseph's face but completely freaked out when our baker donned a clown hat and tie and tried to give him a cookie.

Happy Halloween!