12 July 2012

What a difference each day makes

John mentioned pictures would be coming soon...here are a few of our favorites. 
Brown Bear, Brown Bear, what do you see?  I see Eddie laughing at me

 I'm a "dopter."

Rolling down the hill at the Wooden Boat Festival

Yesterday while visiting our beloved ICU, Nurse Kelly was telling the Docs that Eddie had "climbed right up in that chair."  I realized I don't think of such things as milestones anymore given that Eddie is able to do more every day.  I am getting to the point where I don't have to spot his every move, worrying he'll fall or not be strong enough to do things alone.  We're down to one page of meds, and Eddie kept his weight steady from his last clinic visit 2 weeks ago to yesterday.  I hope he is always glad, but in a way I look forward to the day when he doesn't look at me and say, "I'm glad to be at home, not at the hospital."  He still says that all on his own, every day.  Today he asked to see his "pump in the cabinet."  He likes to hold up his empty Berlin heart to his belly and match everything up. 

We love to visit Children's and see beloved friends, but we regret there are many who we haven't been able to hug or keep in touch with since Eddie left the hospital.  We'll find a way of tracking you down!  (or you could get in touch with us :-)  We don't want to lose you...you're part of our team.

Thanks to those who are still thinking of us and praying for us and taking the time to make things a little easier for us...we couldn't do this without you!

11 July 2012

Still Here . . .

Embarassing, really . . . that it has been over a month since the last time we wrote. So many things continue to happen and there is no shortage of things to write about, but going back to work and summer break have really wiped us out.

Considering the ups and downs, the close calls, and nerve-wracking months leading up to Eddie's transplant, it is a blessed fact that Eddie has recovered very well in the 2+ months since the operation. Not even a bandage is left . . . just angry scars which will fade over time. He smiles readily and wrestles with brothers and sisters. He walks the stairs and sings and loves to read . . . nothing sweeter than seeing brother reading a book to him in the library yesterday.

For me, the months in the ICU seem like a distant memory. Sarah may feel differently. It was as if we stepped into an alternate reality . . . where deeply invasive surgeries and toxic medications were the norm . . . where such treatments were in fact demonstrations of love and generosity from total strangers. These strangers, soon to become fast friends, were reaching the limits of their professional wisdom and were tapping into their surprisingly vast stores of creativity.

We thank God every day for those beautiful nurses and doctors . . . we miss them terribly and feel a surge of strength when we make surprise visits to the ICU while waiting for Eddie's clinic visits.

Family, friends, neighbors have all done so much and have held our hands and soothed pained hearts (not to mention fed hungry bellies too many times to count). Most would say it is unnecessary, but we spend time every day thinking how we can say thank you . . . not to repay a debt (impossible) but to allow a glimpse of how important each act of service has been for our family.

Sarah will head back to the clinic with Eddie tomorrow . . . we are now going to hospital once every other week for ECHO and clinic. He is down several meds and will be off the steroids within the next week. We wish he would eat more . . . it is still like pulling teeth to get him to eat his meals, but at least he is eating a broader variety of foods. Can you believe we've had to bribe him to eat things like bacon? And he still won't touch Nutella!

More later . . . including pics.