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.


Anonymous said…
Paul said, "Glad to read that you are getting out and around Portland in your bikes."