This is way overdue, but long-time readers might remember that Rudy was an award-winning photo subject. In addition to what I’m sure was an obscene amount of cash and world-wide acclaim, Greg Lawler won a cool six-pack of Root Beer with his shot on the label. We’re so thankful to Gabe and Glen at Specialty Color Services for sending us one of our own. We’re still debating over what special occasion we’ll crack them open on! Thanks, Greg, Gabe and Glen!
A sweet award! (Better than an Oscar)
Rudy thinks it’s pretty neat to have his face on a bottle of soda. He also thinks it’s pretty fun to hang out on the couch with his big brother and take his speaking valve for a spin:
Rudy’s bronchoscopy involved a rather challenging time change for us–from the Pacific Daylight Time Zone to the Hospital Time Zone. In the round-the-clock world of the UCLA Med Center a pre-op check-in time of 4:45AM is part of business, but it was a bit of a start for us. It meant getting Trish and Rudy up at 2AM and then on the road by 2:45–at least there’s not much traffic at that hour.
Trish called shortly before lunch to say that everything went very smoothly. Rudy went in at 7AM and was back in recovery by 8:30. He took a bit to wake up and is a bit bugged by the lines attached to him (that’s actually an encouraging and new development to see him spunky instead of lethargic and resigned).
Dr. Shapiro said everything looks good except for a node of scar tissue just above the trach that will require surgical removal when it comes time to remove the trach. This is not uncommon, but it will likely mean that the trach will stay in unless it is certain that we have over a year to wait before the Glenn (highly unlikely). She said that Rudy’s vocal cords look mushy (OK, that’s our term because we forgot the science word Dr. Shapiro used). It simply means they are not toned and tight like they would be through vocalization, but there is no reason to believe they won’t develop properly when the time comes.
Dr. Shapiro would like to keep Rudy overnight, but there is a bed shortage upstairs so that may change. Thanks for praying. Now, I’m about due for another cup of coffee…
We didn't need KU to tell us he was a Hall-of-Famer, but it made us all the more proud!
Rudy’s Grandpa Dick crossed his final finish line this morning. Trish made it to Kansas and was able to be at his side with her mother and brothers. I know that she will want to write more when things settle down so a longer post will be forthcoming. We love you, Grandpa Dick!
Perfectly on cue, some incredible summer weather came for Memorial Day weekend. The cool weather hasn’t stopped the kids from swimming previously, but today was one of those perfect days to have a pool.
Rudy sat on the deck and was having fun watching Max. It wasn’t too long before he got splashed. A bit startling at first, but then it was kinda funny!
That gave me and Max an idea, so we rigged up the kayak…
We’re counting down to the end of school so it seems that there’s some special event every day. Wilson had a band concert and got inducted into the Junior Honor Society. Olivia had two field trips and participated in the school lip sync. Max had a spring sing and a special class presentation this morning. Rudy is a trooper and goes along for the ride, even though he doesn’t like crowded rooms with lots of applause and cheering. That’s why he really liked Max’s presentation as it was in a room full of quiet and well-behaved kids.
Listening to Max's presentation
As Miss Grant and Max’s classmates have been following Rudy, they were particularly interested in Max’s reports about Rudy being able to speak with his new valve. So, Max promised them a little show and tell.
Max showing everyone the speaking valve
Rudy knows when the spotlight is on him so he happily gave them a show with a few really good squeals.
Max showing off his little buddy
The kids are counting down the days until the final school bell rings on June 3rd. We are so proud of them and are glad that Rudy has such caring and dedicated older siblings. He lights up when they come near him so we’re looking forward to a lot more of that with them home for the summer. We’re also so grateful for the special school community at La Patera and how they’ve taken interest in Rudy and surrounded our family on this journey.
We finally have blue skies and sunshine. It’s going to be a great weekend!
I’ve mentioned before that I do internet rounds just about every morning to check on Rudy’s heart buddies. Even though this can evoke a heaviness, it’s just something I can’t avoid doing. On the other hand, there are mornings where it brings forth the good kind of tears, like when I read about Gabriella’s miraculous day yesterday. What a courageous girl; what dedicated parents; what incredible doctors!
Even among an unchosen path, there is richness one wouldn’t have found otherwise. The anguish and worry have a way of finding us–we better not let the moments of joy escape unnoticed.
Last night, we headed to the Goleta Valley Junior High Talent Show. Surprising the amount of talent among the student body. Among them was our Wilson. Despite parental suggestions of a Shakespearean monologue or a perhaps a catchy show tune to wow the audience, he instead opted for The Who’s “My Generation”. Not only was he right, but from the sounds of it he might also have to rethink his apprehensions regarding the fairer sex. The screaming adulation is so reminiscent of my own adolescence. Oh wait, those screams were from girls as they ran the other way…never mind.
Anyway, depending on your tastes, I suggest you to turn your volume fully up (or down).
It’s April 7th…APRIL 7th!!! Perhaps only the most astute Rudy’s Beat followers will note that date, but for our family, I don’t think it’s a date we’ll ever forget. One year ago, it was the day we wondered would ever come; the day we got to bring Rudy home from the hospital. Maybe he missed the place a little and went back for a couple weeks before he was home for good, but we’ll never forget seeing those indefinite conversations begin to include ruminations of discharge dates. First the windows were spoken of in terms of potential weeks (give or take); then certainty increased and actual days and dates were pinpointed. Of course, the Rudycoaster made for a few fits and starts, but few days defy description like the one that saw seven months in the hospital come to an end.
…and it’s been a year. The docs were hoping that we could get Rudy out of the hospital for even as little as four to six weeks, just to create a bit of space before he needed to go back for the Glenn. I believe it was Dr. Rick who held forth that, beyond any medical reason, he felt it was important for Rudy to know what home was. That it was nothing like the regulated environment of the ICU. The bed is comfier at home–and you can snuggle in your sister’s, brothers’ or parents’ too. It’s warm sometimes, cold others. It gets light in the morning, dark at night, and flickers when the sun comes in through the trees. There’s noise from brothers, sisters and birds outside the window. There’s laughing, dancing, singing, nerf wars and wrestling matches. The room can smell like flowers, dinner (when Trish cooks) or Febreze (when Trish cooks tacos). Things change; there’s variety–hopefully experiencing that will instill a desire to fight his way out faster next time.
We’ve stayed put more than any other year we can remember, but have also been able to have our share of adventure. There’s no way around the trite observation of how quickly twelve months have flown by. They’ve been stuffed with the emotions and stresses that we’ve come to see as part of this unique journey. But along with the challenges come particular riches and beauty. We’ve been blessed to have twelve months of that.
Great to have you home, Rudy!
April 7, 2009--home at last...
April 7, 2010–Still home, still happy!
We never get tired of reliving that day. I think we’ll be watching this a few more times in our home tonight…
The usual view of our house became obstructed this afternoon (actually, not a bad thing if I consider all the weeds on our lawn). We’ve taken possession the mother ship and are now configuring it for the big journey. Efforts today were a bit hampered by three VERY excited older siblings exploring every nook and cranny of the craft, but we’ll be able to get down to business now that they’re in bed and when they go off to school in the morning. We’ll grab them at lunch and then off we go!
We were told not to make a big deal of things today, but sometimes you have to bend the rules just a little bit. We thought about bursting forth in a festive chorus, but realized that Rudy couldn’t sing along. Instead, we mustered the creativity and precision to come up with this display. OK, so we had to wake Rudy up from a nap and the camera work leaves a bit to be desired, but if you set that aside it begins to evoke the pagentry of the opening ceremony in Beijing. Maybe just a little.
Rudy's Beat 