T+69: So long, Mom and Caleb, see you again soon!

Hi everyone,

Sorry it's been a while since I've updated.  Just after I wrote the last update, Sarah and I decided that Ethan was stable enough that it would be a good idea for her and Caleb to head back to Portland until Ethan is done here.  Last Saturday, Ethan and I dropped them off at the airport for their flight home.

Ethan, with Sarah and Sue.  Sue is our
wonderful Care Partner Volunteer.  She's
been a big help throughout our stay.  Usually
she comes by and watches the boys for a bit
just before we're about to loose our sanity.
Sarah and I agree that this is a good decision for everyone.  Caleb is enrolled in four weeks of  a really cool summer day camp, where he'll be fishing and wilderness skills and having all kinds of fun outside. Sarah got back in time to be present for her department's annual planning retreat and will keep even busier getting the house ready for Ethan's return.

While they're gone, Ethan and I are keeping busy with Ethan's weekly clinic check-ins and his 3x/week rehab appointments.  When we're not at appointments, back at RMH, Ethan and I are working on his speech and fine motor skill exercises.  Equally importantly, we're taking advantage of the quiet apartment to teach Ethan better sleep skills and habits.

At this point, our plan is that, in a few weeks, Sarah will fly back out for Ethan's exit conference.  Then she'll fly back with Ethan while I make the 30 hour drive back to Oregon.  (Hopefully, it'll only take 3 days if I drive by myself, as opposed to five with kids in the car.)  Meanwhile, Caleb will stay with his grandparents for a few days, until Sarah and Ethan get back.

In related news, Ethan's primary, Dr. Lund mentioned that he will be working in Uganda on July 22, Ethan's T+100.  He said he'd like to schedule the exit conference the week before, so sometime during the week of July 11. Good news there as it means we'll be out of here in another 3 1/2 weeks and we'll all be together back in Oregon one week earlier.

Latest news from the enfraftment front.  As of last week, Ethan's CD15 marker (enzyme production): 94% donor (right where it's been) and his CD3 marker (t-cell production): 18% donor, up from 5% at the end of May.   Dr. Lund says that, with this protocol, the CD3 marker may take up to a year and a half to stabilize.  So we'll keep hoping.  And then hope some more.

A couple of weeks ago, Jeff Hayden, one of the two best
men at our wedding came up from Georgia with his family to
celebrate his parent's 50th wedding anniversary.  The
eight of us had a great time catching up at the
Minnesota Zoo.

In other good news, Ethan had his post transplant physical therapy evaluation last week.  The physical therapist said that from a PT standpoint he's in the best shape of any Hurler's kid she's ever seen.  In fact, he's in such good shape, that he didn't qualify for PT services. Wow!  Okay!

On the other side of the equation, Ethan's speech hasn't progressed much at all.  Ethan's receiving speech therapy twice a week and I think it's frustrating for me, for the speech therapist and for Ethan.  It would be generous to say that Ethan can say about 25 words and can sign another 25.  Though in terms of words and signs he uses on a daily basis, it's been closer to ten and ten.  As Ethan gets closer to his third birthday next month, the lack of progress is bigger and more worrisome day by day and week by week.

I do see in him patterns of behaviors and responses that lead me to believe that he's got average or near average understanding and intelligence.  It's almost as if there's a disconnect between his brain and his muscles and his brain isn't able to make the muscles move for speech or for some of the fine motor skills like pinching and turning his wrists.  For example, yesterday, we went to the grocery store to pick up more of Ethan's favorite food (currently pureed peas).  I loaded up at the store, we checked out and came home.  When we got back to RMH, I dropped the bags inside the room and we went right down for dinner.  Two hours after we came up from dinner, Ethan went over to the bag, got a jar of food, and then went over and got a spoon out of the drawer.  So clearly, he'd followed the sequence of events about something that was important to him, and he remembered it over a period of time, then he acted on it.  On the other hand, he can't consistently throw a bean bag into a 2' x 2' box 3' away, because he can't consistently release his grasp on the bean bag.

The end of the school year at RMH signals the start of
Monday Night GO KARTS,   Caleb had a blast!
Dr. Lund has said that it takes about six months after transplant for the body to start production of the enzyme and to clear out the storage, waste material (aka GAG buildup) that can be cleared out.  He said that patients generally see some increase in the pace or ability to learn after that happens.  Which is not to say that the pace of learning will or will not reach that of an unaffected child.  And it is certainly not to imply that he'll magically catch up with "normal."  But my hope is that as the storage material clears up, his language acquisition will begin in earnest.

Ethan and I had fun, too!


Outside of the medical issues, as you can see from the pictures above and below, life in the couple of weeks before Sarah and Caleb left, were fun and busy.  Caleb went to the zoo three times, once with his RMH classmates, and twice with the rest of us.  He and Sarah took one last visit to the Lego store at the Mall of America.  Caleb and I also went to see an amateur nascar series at a local racetrack (unfortunately, no pictures because it was too late when it started).

And so did Sarah!
Ethan and I have also had fun meeting some other Hurler's families that have come through for their annual evaluations, Rylie and Gracie and catching up with the Blancheris who we met briefly when we arrived at New Years.


If you've ever wondered if life can be boring, hectic, stressful and hectic all at the same time, the answer is yes.

Comments

Gracie's Mom said…
It was wonderful to meet you too! We'll be following along and keeping you all in our prayers.

Much Love,
Gracie and family

graciewhite.blogspot.com
Love you guys all so much and can't wait to read updates from home! xxx