Sunday, August 21, 2011

T+130: Summertime

@ the Oregon City Farmer's Market
Last week, there was a short blurb in the local newspaper speculating that we might make it through summer without a single day in the 90s.  Sadly, the temperature here yesterday was 95, so we didn't quite make it.  But it's been a very temperate summer--most days have been in the low to mid 80s--and we've been making the most of it.  We've been having squirt gun battles and  hose fights, trips to the zoo and the science museum, playtime at the park and quiet time at home. It's been a lot of fun.

Sarah arriving home from work.
Sarah's bike commuting has been going great.  She passed 200 commuting miles last week, and she's racked up at least another hundred or so toodling around with us. Sarah's also been trying out a whole bunch of vegan recipes.  I'm not quite sure what she's been eating but I can say that there's been a bunch of legumes involved. Me and the boys have often opted for more pedestrian fare.

The boys and I have been biking into town 2-3 times a week.  At the very least, we're going in for Ethan's weekly clinic appointments, but we usually find some other excuses to go to town. The great weather has helped us explore the limits of getting around by bike without stressing anyone out too much.  I usually try to limit the trips to an hour in each direction.  But there was one abortive trip to the zoo when dad should have jogged right instead of left and as a result the three of us wandered Portland's west hills by bicycle for an hour and a half.  (It was the cliched lost dad who won't stop for directions, swapping the cussing confused father driving the car, with a huffing and cussing father riding, pushing and cajoling a loaded bike through the hills.) We never did make it to the zoo, and unfortunately, stood up a cousin and her lovely daughter who endured the parking hassles and crowds of reduced admissions day at the zoo.  (Sorry, M!)

The boys and I have also found excuses to stop by Sarah's office once or twice a week.  We'll either stop by for lunch or come by towards the end of the day and ride home together.
On the phone with mom to let her know that
we've arrived for our lunch date.
@ the Chinese Garden next to mom's office

The boys have been having a fantastic time together. Caleb has been absolutely fantastic playing with Ethan and helping me with him from time to time.  And Ethan is very happy to be doing whatever Caleb happens to be doing, especially if those behaviors that he's mimicking are the ones that get an immediate reaction from mom and dad! 
Ethan is doing pretty well.  His blood counts have been good and his engraftment went up from 95 & 15 to 95 & 30 (CD15 and CD3 respectively), so that was very good news.  But life's not without its incidents.  Last Friday, I was in Ethan's room drawing his mid-day meds when I heard one of our dogs, Katie, give a snarl from the hallway and then Ethan started to cry.  I came out to find that evidently Ethan had tried to pet Katie and she'd nipped his face, giving him shallow scrapes on his lip and under his left eye.  Four hours later Ethan's eye had swollen up and started draining pus.  Sarah and Ethan headed off to the emergency room to get him checked out. 

After a thorough exam at the ER, it turned out that Ethan's eye hadn't been injured, but that he was fighting a bacterial infection of some sort.  So he's had a course of antibiotics and eye drops added to his meds for the last week or so and he's had a low grade fever off and on.

Given  that Katie nipped Ethan and broke the skin, Sarah and I decided that we needed to remove Katie from the house.  Katie's a good dog, but she's never liked small kids--ours or anyone else's.  We've always known that she was borderline, to the point where when Caleb was a newly mobile baby, we had a pet behavioralist come in to evaluate her and see if we were okay to have her them in the same house.   When Ethan went to the ER on Friday, Sarah and I both thought that Katie had injured his eye.  Katie isn't Cujo, but Ethan doesn't know how to recognize when Katie is telling him that she's not comfortable, and the potential complications are too great. 

Sarah's parents have agreed to let Katie join their one dog, one cat household.  Bob and Pat had Katie and our other dog Mollie while we were in Minnesota.  So they know Katie and haven't had any problems with her. 

In other Ethan news, for the last couple of months Ethan's weight has been declining slowly.  His weight, when he was admitted for transplant was 15 kgs. In mid-May it was 15.4.  Then in one week it dropped a full kilo to 14.4.  Since then it's gone up a bit then down a bit more.  The net result was that Ethan seemed to be loosing a tenth or two tenths of a kilo a week.  And even getting him to that point meant letting him have any kind of junk food he would eat just to get the calories into him.

About three weeks ago, I asked for an appetite stimulant for Ethan.  That seems to have jump started his eating.  Even though he still won't eat a very good variety of foods, his weigh went from 14.2 to 15 kgs

As we've worked through these issues, both his new pediatrician and one of the hematology nurses said essentially the same thing, "sounds like pretty typical behavior for a three year old."  And you know what, they're right.   With everything going on with Ethan, I do have to remember that we will still have age appropriate issues going on and to a certain extent I need to recognize and then adapt that to Ethan.  For example a lot of three year olds may have problems eating a healthy diet, but not all of them have the same low threshold before being put of IV nutrition or getting a nasal gastric tube to be fed that way. 

In other Ethan health news...  Poop.

The immune suppressant that Ethan's on leaches magnesium from Ethan's system.  If his magnesium gets too low, he can have cramps and seizures.  So he's been on a magnesium supplement. But the magnesium supplement doubles as a laxative. So, we've been dealing with a lot of poop.  And did I mention that Ethan's butt is really hairy from the meds?  Put the two together and it adds a whole new dimension to diaper changes.

A couple of weeks ago we talked to the doc about it and she swapped his magnesium sulfate for an over the counter magnesium supplement.  Ethan's diarrhea immediately went from bad to worse.  It was as bad as we've seen since his adenovirus bout last summer, and might beat that.  Oddly, when the docs took him off the new med and put him back on the old one, his diarrhea seems to have abated entirely. I don't understand it, but that's okay.

Basically, aside from the dog bite, it's pretty much par for the course.  Just trying to tweak his meds, his eating and his sleeping so that each is going reasonably well.

Once Caleb starts school on September 6, I'll get Ethan back into speech and occupational therapy.  Until then, I think we're all happy to keep things pretty relaxed and just try to have as much fun as possible.

Yesterday, Caleb and I had a great time at the Oregon International Airshow.  Pics below.

Monday, August 1, 2011

T+110: Fighting for Normal

This weekend, Sarah and I sold our low mileage 2006 Mazda sedan and spent $8,000 buying two electronic assist bicycles. 

Yes. You can read that again.  Go ahead.  We'll wait. 

Are we insane?  
Is this some kind of spur of the moment folly?    
Are we negligent parents?

And no.

And before you call social services and report us for endangering our sick kid, know that we did hang on to the minivan.  (Though we're hoping that it will stay parked at least four days a week.)
Sarah's new bike
Todd and the boys' new bike (click here for a better picture)

In the two years since Ethan was diagnosed, we put everything on hold, or at least tried to keep it spinning in the background, while we fought to help Ethan survive. Now that it looks like Ethan has come through the worst of it (knock on wood), we started thinking a great deal about how we get back to some of the things that were important to us before we got on this roller coaster.  

For me, that means getting back to bicycling on a regular basis.  Two years before Ethan was diagnosed, I started commuting by bike. In those two years, I rode a 20+ mile round-trip and 4-5 times a week  Riding helped me quit smoking and stay quit (up to a point), it became a stress relief, a time of enjoyment and reflection and got me into the best shape of my life. 

For Sarah, it means singing again with the Aurora Chorus, a fantastic Portland women's choir which Sarah loves. And it means a return to Sarah's interest in environmental sustainability and living a sustainable life. 

Before Sarah and Caleb left Minneapolis, we started talking about how I could get back on a bike.I recognized that, as much as I love cycling, it's a very time intensive activity.  I was always loath to let it pull me away from Sarah and the boys before, and I still hate the idea of 3-4 hour weekend rides while the family is hanging around the house or doing something else.  That's why bike commuting worked so well for me, it just fit right into my schedule with minimal impact on my time with the fam.  

Looking forward to coming home, I knew that I wanted to ride regularly, ideally with the boys.  However, while I was comfortable with the idea of riding with the boys into the city for Ethan's doctor's appointments, I didn't like the idea of pulling them in a kids' trailer behind me all that way.  In addition, I wanted to be able to get into the city in under an hour; something I can do when I'm riding by myself, but that would be impossible while pulling the kids.

Then serendipitously, I came across an article about a local congressman who had recently visited a Portland-based maker of electric assist motors for bicycles.    I mentioned the idea of an electric assist kid carrying bike to Sarah and her eyes light up and she immediately latched on to the idea. See, while we were away, Sarah's office moved from the Portland suburbs into town, and Sarah had been looking for a way to stop car commuting, but felt the ride would be a bit too long for her.

For us and the kids, e-assist bikes make a ton of sense.  We live in the burbs, about 12 miles from downtown.  We bought our house at the peak of the market, so we ain't moving anytime soon.  They allow us to ride together, and help shorten the suburban distances and ride times to more manageable chunks.   

We know that going mostly car free wouldn't be easy for a normal family living in the suburbs.  And we know that we're not normal and will never be normal.  But this is a change that very much reflects ideals, activities and practices that are important to us.  

The first day of this grand experiment showed just how challenging this might be.   On her first day of commuting, Sarah got clipped by a car.  She was going straight through a light and a driver that was turning left was sun-blinded and clipped her rear tire. Sarah is okay. But the back tire on the bike is akimbo, and we've called our bike guy to check it out. 

Caleb on the Willamette River at Oaks Bottom with downtown
Portland in the background.
For my first day on the bike with the boys, we headed up to the hospital for Ethan's weekly clinic check.  When we got to the hospital, I realized that I'd forgotten to bring a bike lock and so had to call upstairs and reschedule.  While I enjoyed the exercise of the 25 mi r/t, it would have been better if Ethan had gotten to see the doctor like he was supposed to.  But our new appointment time is tomorrow, so we'll check-in then.  And on the way back home, we stopped at Oaks Bottom Park and the boys got to run around the park and play on the docks which they wouldn't have done if we'd gone by car.   

Then when we got home, we had about an hour to have lunch and relax before heading halfway back into the city to meet a prospective new pediatrician.

As you can see, the first day was pretty chaotic.  Fortunately, Sarah came through with only a couple of scrapes and bruises.  She's shaken them both off and is ready to get back on the bike.

Finally, we had got some pretty good news from Minnesota this morning.  Last Monday, we drew blood for updated engraftment numbers, and got the results this morning. 

Ethan's 6/29/11 results were:
CD15:  93% donor
CD3: 12% donor

These results were:
CD15:  96% donor
CD3:  30% donor

I'd say that's a nice, healthy improvement.  Oh, how I hope the trend continues!!!

Thanks for checking in.