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