Wednesday, August 24, 2011

Wednesdays

Today, Graham had his 7th and final skin/tissue expansion. We did it!!! It feels like yesterday we were walking out of his first one not knowing how we would get through the next six. Well, there is one reason and one reason only that we all made it through...Graham. The first few Wednesdays were kinda brutal. Especially the first couple days after the expansion, with pain, discomfort and probably an element of "What the heck are these things coming out of my sides?!?" Being an outpatient procedure, we would find ourselves at home with a very cranky, sleepy baby. So Wednesday afternoons in July were spent taking turns holding Graham while he slept for the remainder of the day. He would start to perk up and start eating again the next day and we got our silly, smiley little boy back. Here's Nana and Papa doing their part (Dad's sleeping on the job, but that's okay.)





These last four weekly trips down to Riley though, we've seen such a change in the way Graham comes through each week. I think it helped that after we had a few under our belt, it wasn't our first Wednesday rodeo. Walking into Day Surgery on the 2nd floor, Graham gets a "Noooorm" greeting like on Cheers from all the nurses. Flirt.
On the emotional side, we come more prepared for the pre-surgery waits. Keeping a hungry 20-month-old occupied in a very small space for an hour and half can be a little exhausting, but with vidoes, toys and books, we got through. I was able to suit up and take Graham back to the operating room each week, which made the "good-bye" transition much easier and less dreaded.

And although seeing Graham in the Recovery Room immediately after surgery is probably the toughest part of each week, we figured out the best "cocktail" of pain management that worked best and helped Graham get through the first few hours post-op. I don't know why, but when we sing to Graham, that seems to bring him comfort as well. People who have heard Bill and I sing are scoffing right now, but today, my medley of Twinkle Twinkle/ABC's/Up on the Rooftop/Baby Beluga (don't ask me how a Christmas carol got in there) actually put him to sleep. It's so hard to see your baby confused and in pain and just have to wait it out and have him sleep it off. Daddy's big arms and warm chest help too.


Graham sleeps a lot of the way of the two-hour ride home and then most of the afternoon once we get here. The anesthesia and meds make him a little out of it. We've made him a little "nest" in our bed. Yes, we're doing the co-sleeping thing, because it's vital we all get rest and the crib just wasn't cuttin' it comfort-wise for the huge balloons protruding out of Graham's sides. We're all pretty exhausted Wednesdays, but Nana or my girlfriends makes sure we have dinner for Wednesday night.
Graham's resilience astounds me. I can only describe it through something that we see him do every week. Thursday mornings, or even sometimes Wednesday nights, Graham feels well enough to start to play. He starts to stand up to walk, wobbles, and sits back down. He tries again...stands up, takes a step or two and falls. He then tries again...stands up, takes more wobbly steps, finds his new balance and is off chasing the dogs, one of his favorite activites. NOTHING keeps this kid down!
I wanted to give a little glimpse into the last two months of our lives, a chapter we can now close and focus on the next. But not before a few shout outs to the moral support we've received along the way. First of all, my work. They've been super understanding of all the time I've taken off. Lindsay, my morning counterpart of my job share, but more importantly my friend, has picked up the extra work. Granny, who makes sure the kennel runs smoothly so Bill doesn't have to worry about his business while tending to his family.
The Carnahan's, who have let us invade their home every Tuesday night so we're only making a 20 min. drive to the hospital in the mornings, saving us from getting up at 430am. Graham loves Tuesday nights because he gets to play with his buddy, Drake (below,only 6 days younger and just had his drink stolen). And Mommy likes Tuesday nights becuase Heidi always has a glass of wine waiting along with an amazing meal.



And, of course, to our amazing support system of family and friends whose love for Graham makes me tear up just thinking about it. The outpouring of prayers and concern is something I will hold in my heart forever and gets us through the rough moments. Love love love!!!

So, here we are facing the "Big" surgery in a week and a half. His surgery is scheduled for September 2nd, a date that seemed so far off and is now becoming a reality. We will keep you informed with pictures and updates.