Sunday, December 27, 2009

Merry Christmas, everyone, from our very busy and happy home.

The four of us has a wonderful Christmas.  Portland State University was closed for furlough the week ahead of Christmas, and Sarah took the week off too so all of us could enjoy some family time together.  It’s been great having some time at home where we don’t have to worry about telecommuting and keeping up with things at the office.  Basically, it’s just been nice having some time off.

Caleb and Ethan enjoyed Christmas quite a bit.  Both boys seem to like the toys they received and thankfully (from their perspective) there were a minimum of clothes boxes under the tree.  They’re enjoying playing with each other’s toys as well as their own, aside from Caleb’s new train set, which he’s declared off limits to Ethan.
Sorry it’s been so long since we’ve updated Ethan’s journal.  It’s hard to say if we’re busier now than we were when Ethan was in the hospital.  It feels that way.  Certainly, with the holidays, we’ve been running around—both inside and outside of the house--quite a bit.  More importantly, we’ve rather been in the “no news is good news” category.  Ethan’s continuing to do well day by day, and we’ve all settled into our daily routines.
Through December, Ethan went to the doctor’s twice a week for his check-ins and for his weekly enzyme treatments.  His blood tests look good and continue to improve.  At his most recent check, his red blood cell counts and his absolute neutrophil count were actually at the low end of the normal range!  A couple of weeks ago, we got the results of his chimerism test. Ethan was between 88%-100% engrafted on the four markers they tested!  The other good news was that his kidney function looks good, so a couple of weeks ago we were able to stop his overnight IV.  Even though he was asleep for much of that time, it is so nice not having to hook him up 12 hours a day.
Ethan’s energy and mood continue to be very good.  He’s playful and inquisitive and a joy to be around.  He’s still not talking, which is a drag.  I keep hoping it’ll happen any day.  But with his hearing problems and enlarged tongue, I have no idea when he might be able to say his first word.  At the same time, Ethan has started giving wet sloppy kisses, with little “mwah” sounds attached.  Technically, I suppose, that would have to count as his first word, but I’m waiting for the official first “daddy.”   
Behaviorally, the main problem that Sarah and I are having with him right now is that he won’t sleep through the night.  He wakes up every hour or two during the night, UNLESS we bring him into our bed, where he snuggles right down and sleeps right through (usually).  When Ethan was in-patient, his sleep was so often interrupted that we’d often let him sleep with us so that he’d settle down more quickly.  Seems to be a habit that Ethan doesn’t want to give up, and he’s not hesitant to make his feelings known!
We’re trying to break him of the habit.  So far, we’ve tried giving him a stuffed animal to cuddle with, but he’s not much interested.  Next up, I think we may try going from one stuffed animal in his crib to ten or twenty.  Hopefully, anytime he rolls over, he’ll roll right next to another “snuggler,” cuddle right up and keep on snoozing.  Wish us luck!  (Yeah, I don’t think it’ll work either.  *Sigh.*)
The doctors have started a month long taper of the steroid that Ethan’s been taking to combat his GVHD, but last night we noticed the beginning of his skin rash returning, so we started him back on his steroid skin cream this morning.
We’re also getting used to a medically insignificant side effect of one of the medications he’s on.  Ethan’s taking cyclosporine three times a day to keep his immune reaction suppressed to avoid GVHD.  One of the side effects of cyclosporine is increased hair growth. 
It makes for an interesting package.  The hair on his head is so thin and sparse that he’s still essentially bald.  But his face is covered with this sheen of downy hair, his eyebrows are incredibly thick and he’s heading towards one heck of a uni-brow.  His eye lashes are so thick that he looks like he’s wearing mascara and Sarah and I now have the only one year old on the block who needs to shave.
“They” say that the hair growth is only temporary, which is a really good thing.  Having a boy werewolf is a small price to pay for a new start on life, but I’m still glad it’s temporary.
We’re T+61 today.  It seems to be generally thought that T+100 is the magic number for avoiding severe complications.  We’re still taking it one day at a time.  Ethan’s still restricted to the house now, and likely will be until mid-February.  After that, they say that he’ll be able to go out to lightly populated public places.  And it’s likely to be June or July before his immune system is fully recovered and he’s able to go back to day care. 
We’re settling in for the long-haul, but we’re also starting to reclaim some elements of normalcy.  Sarah and I were able to work out our morning routines so that I could start bike commuting again.  I’ll be working from home 3 days a week and on campus 2 days for the foreseeable future, so it’s a lot less time on the bike than I like, but it’s very nice to be riding again even a little bit.  In January, we’re also planning for Sarah to return to the local Aurora women’s choir.  Aurora is a great choir, and a wonderfully supportive group of women.  It’s a big time commitment for Sarah, but like finding time for me to ride, it’s just one of those things we’ve got to do.
As the year turns from old to new, we count again our many blessings—our boys, our families, our many, many friends, and all those who share the journey of medical necessity.  We are ever grateful for this circle of which we are a part.  May we all know joy in each day, with patience for all that has to be done and thankfulness for all that we are able to do.