As is typical this time of year, we’ve had a full schedule the past two weeks since we brought Rudy home from UCLA so I apologize for not updating on Rudy’s post op status. He is healing nicely and seems to be adjusting well to the closure of his “extra airway”. His new found ability to hold his breath and all the new sensations associated with the closure are curious to him, I think, be he hasn’t skipped a beat. We have a post-op appt with his ENT at UCLA on Monday. I’m preparing myself for the fact that it might be our last appt. with Dr. Shapiro for awhile…kinda strange! 🙂 Unfortunately, Rudy has struggled a bit this week with low O2 sats, fever and lethargy. It has been concerning but I’m hoping it’s just a bug that will pass quickly. Rudy hasn’t let it take away from today’s Halloween fun though! Rolf and Olivia (and Max too) worked hard on Rudy’s TOTALLY AWESOME costume so you’ll need to scroll down to see their finished product! 🙂
All this fun led to tonight’s BIG NIGHT…
‘Hope you all had a fun Halloween too…lots of treats with a minimal amount of tricks!! Happy Day!
Rudy and I made it home from L.A. just in time to say “hi” to Rolf and the big boys as they headed out to their various evening commitments, Livy made Kraft macaroni and cheese for the two of us for dinner…YUMMY!!!!, and now it’s time to get some sleep! ‘Just wanted to say “thank you” before this day comes to a close. Rudy is tolerating the stoma closure beautifully and it’s nice to be home…we’ll keep him home the next few days and follow up with Dr. Shapiro in two weeks. Thank you for your prayers. Nighty Night!
Rudy did great today! He was out of the OR by 9:30am but we had to hang out in the PACU most of the day waiting for a bed to open up in the PICU. Nurse Joseph treated us right with a big selection of movies and even scored me a coveted comfy chair while we waited. We finally got settled in the PICU at 4:30pm. I thought for sure Rudy would fall asleep once we got settled but it’s 7pm and he’s still sitting up happily greeting everyone who walks in the room…Mama is tired (up since 3am) so he may be on the nurse’s watch here soon if I fall asleep before he does! Ha ha ha. So grateful for the good care he’s getting once again in this familiar unit and so grateful for a successful procedure all around. Thanks for your prayers! Sent from my iPhone
Rudy was a happy little monkey for our 4am departure from Goleta and our 6am arrival to UCLA…Rudy’s attempt at “thumbs up” on Valium right before he left for the OR! All is on schedule so far today…thanks for your prayers!
After a string of some pretty fantastic celebrations (the Heart Walk, Rudy’s 5th Birthday, the Rescue Mission’s big annual fundraising event, La Patera Fall Carnival), last week was filled with some pretty important fall “to dos” in Rudy’s annual calendar including his IEP (Individual Education Plan) meeting. My first impression when I walked into the room of teachers and specialists was “Wow! Small crowd!”. Ha Rudy’s last two annual IEP’s involved both the county AND district personnel and the room had easily 18+ people in attendance…now that Rudy is solely at GUSD, we had a more intimate discussion with 8 including his classroom teachers, his classroom nurse, the district nurse, speech therapist, adaptive PE teacher and psychologist. As always, there was much to discuss as we reviewed last year’s goals and heard the proposed goals for next year. We are encouraged by the progress Rudy has made and as much as we value all that the county program offered Rudy, it’s so nice to have him closer to home and settling into his own neighborhood school district. And, once again, Rolf and I walked away humbled by the number of quality individuals investing in Rudy’s education so significantly. We are so grateful! There wasn’t any talk of adding time at La Patera Elementary as part of a “blended schedule” for Rudy but this is still on the table and details for that arrangement will be ironed out in the coming weeks…which is fine because our focus is now on getting Rudy past this week’s surgery.
Rudy has his stoma closure surgery tomorrow. ULCA just called and Rudy’s procedure is scheduled for 7:30am which means we have to report to registration at 5:30am (which means we’ll be leaving SB at 4am – FUN). It’s a minor surgery for Rudy but because Dr. Nina and her fellows/residents need to cut around the stoma, remove scar tissue and then stitch him up from the inside out, it’ll be a minimum of 2 hours in the OR and will require an overnight (possibly 2 nights) for observation. I’m praying he tolerates it all well, of course, and is protected from infection as he heals. It’s been so long since he’s had a surgery involving an incision that I kind of forgot about all the pre-op stuff we’ve had to do this past week (blood draws, DCing aspirin for 10 days before surgery, dr. appts, etc) and all the post-op wound care we’ll have to be on top off to keep him infection-free. I LOVE that it’s been long enough to forget details like that but I don’t like that it has made for a mad scramble this past week!! Ha Ha Thank you for your prayers! I’ll post an update after tomorrow’s procedure. Thank you – thank you!
Today is Rudy’s 5th Birthday! It is a bit mind-boggling to think about all the prayers and hopes, close calls and comebacks, all the tears of heartache and tears of joy, the disappointments and the celebrations, all the experiences and special family memories we’ve packed into these first 5 years of Rudy’s journey so far! Our family watched old Rudy’s Beat video clips on the Apple TV during dinner tonight as part of out celebration and it’s not only amazing to see how far Rudy has come but it’s also startling to see how much the big sibs have grown and matured! Oh my, they were all so young when Rudy joined us and now they are all so independent and articulate and, well, big!!
Each birthday Rudy has is a big deal but the milestone of him turning 5 seems particularly significant this year! We got so good over the years at taking life one day at a time that we really didn’t dare look too far into the future. And, now, here we are!! October 1, 2013!!! I wish I could say the day Rudy was born feels like it was just yesterday…but it doesn’t. 🙂 It has been a long marathon to get to this milestone birthday and, on some levels, the hard work is just beginning but as I watched Rudy at school today with a huge smile on his face and pointing to himself when his teachers and classmates sang “Happy Birthday” to him, I was overcome with gratitude for every step of this marathon…because every step whether crippled or strong has twisted and turned a path to today…and today was pretty sweet!
A big thank you to all who sent texts, FB messages, phone messages, cards and little gifts! He has been well-celebrated! Rudy’s life is full and rich and can be defined by the love that he gives and receives! We couldn’t ask for much more for any of our kids. Happy Birthday Super Rudy…our HLHS Warrior…goofy kid brother…inspiration…joy! You are 5! Woo Hoo!
And the boys gave Rudy a video greeting…Totes Presh!