Monday, April 25, 2011

a little time away...

From the moment we left the hospital after Joshua's surgery, Jon & I have been dreaming of getting away, just for a couple days. We finally found the time! We spent last several days in Aptos & it was amazing!
We spent time playing at the beach, we spent an afternoon at this park, where we picnicked...
We hiked through a beautiful forest...
We explored all of the typical sights of the area...
We watched the sunset...

And we spent an evening at the Santa Cruz Boardwalk. We rode the Merry-Go-Round & a couple of roller coasters. Yeah I know, what kind of moron would put their child who's just recovered from major open-heart surgery on a roller coaster?? Uh, that would be me.  I don't recommend it. In my (weak) defense, it didn't hit me until midway through the ride when I looked at Joshua & saw the sheer terror in his eyes...this kid's heart wasn't made for roller coasters (but his soul was). Thankfully Joshua lived!  In fact he hasn't stopped talking about it since. He keeps reminding me that he's "the bravest boy ever" and he can't wait to go again.
I'm pretty sure I just lost my chance at being named 'mother of the year' yet again, but there's always next year.
Everything feels so normal again now that Joshua has recovered. It's an even better normal than I anticipated. The kid can go, go, go all day long! It can be exhausting, but I love it! It's something I'll never take for really is a miracle!

Wednesday, April 20, 2011

Friday, April 15, 2011

A new man

The Fontan has given Joshua energy he has never know. He's loving it. We're loving it. He runs in circles around the kitchen island, time after time - just because he can.
On Saturday we went on a five mile hike.  We brought the double jogger because we figured the boys would ride the majority of the time. Wrong. Josh walked probably close to 3 miles of our hike.  I use the term 'walk' loosely, because he was like a hound dog darting from one point to the next, checking everything out along the way!
When I think back to pre-Fontan, I am filled with gratitude that he's doing so well now. He couldn't walk more than 20 yards without losing his breath, climbing the stairs was a challenge & though he liked independence, he preferred riding in a stroller to walking because he didn't have the strength. It's a miracle that his heart can keep up with his legs finally!
Today he is 6 weeks post-op.  He's officially hit the recovery mark - and he's a new man!
(taking a water break on our hike - wouldn't you know, the one time the boys both look at the camera the girls are day dreaming:)

Tuesday, April 05, 2011

One month later...

Joshua seems as though he's turned a corner the past few days. Previously, his recovery seemed to be moving slowly -  however he's been doing noticeably better lately! He's running around and playing just like he used to. I can tell he's still progressively getting better, so it's great to see.
He visited the Cardiologist last week & he went from taking 6 doses of medicine daily, down to only 3! He's tolerated the change well & he willingly takes his meds again. 
He's still looking kind of blue, his sats are around 88-90. I think just as his energy level and drive have improved with time, so too will his coloring & his sats.  He had the fenestration, so his sats will probably range in the low 90's rather than high 90's when he's made a full recovery. 
I can't tell you how good it feels to have the Fontan behind us, spring ahead of us & our energetic little boy back & (nearly) better than ever!
What a difference a month makes!