Well, it’s that special day again. The day we share love and a goofy tradition or two. Lots of activity today as we’re participating in the K-LITE radiothon again for the Rescue Mission’s Bethel House. Really fun and for a good cause. (If you’re in SB tune it at 101.7 FM and call (805) 879-5483 to pledge and dedicate a song to your Valentine!) Trish started the day on the radio and I’m headed there myself in a bit. A great day filled with inspiring stories of women in recovery. More info, click here: http://www.sbrm.org
But there’s are some special memories this day will always hold for me. Valentine’s Day in 2009 was one of those quiet Sundays during the seven-month stretch we sat with Rudy in the CTICU at UCLA. The months were marked by small developments (foot wiggles, brow furrows, etc.) that only parents holding a vigil would notice. That day, I remember making eye contact with Rudy for awhile, when suddenly I noticed just the slightest twinkle. I managed to snap a picture and Nurse Amy verified that we had captured Rudy’s first smile–despite all the wires, tubes and the monster bruise on his arm from an IV gone wrong. One of my all-time favorite pictures and easily my most memorable Valentine present!
The best Valentine ever--RUDY'S FIRST SMILE!!!!!!
From here, there’s probably no appropriate segue to this year’s Valentine greeting from our kids. One favorite family tradition (remember this and this). Submitted for your enjoyment:
Happy, Happy Heart Day from ALL the Geylings to you!
We came home from church last night to discover that Santa came to our house early! We enjoyed a late night celebration…Rudy fell asleep in the middle of the fun so he still has a gift or two to open today.
It’s a good thing Santa came when he did because we woke to the beeping alarm of Rudy’s oxygen concentrator when the power went out at three a.m. and it’s still not up and running now…Rudy is safe on portable O2 but the house is cold and we have no coffee!!!…good reasons to stay snuggled up in bed. :).
Merry Christmas dear ones…we wish you an extra special day!
There’s nothing like a good Christmas party. We enjoyed a memorable one last night. We couldn’t have asked for a more beautiful home with more dear people (the Rescue Mission board). But the quality entertainment really made the soiree. Take a look:
Can’t get enough of the prodigy (we can’t) here’s another clip. He seems to be mesmerized by his own talent!
There’s still a few available bookings during the holiday season, but act fast…
Life’s been running full lately with school, work, football and band. Makes the evenings at home few and far between, but today we got out in the cul de sac and did our thing. Rudy loves rolling himself around…likes it even better if Max does high speed fly-bys on the scooter.
This weekend included a lot football (as they often seem to this time of year). It started with cheering for Wilson as the band played for the Homecoming game at Dos Pueblos. We kept it up with Max’s YFL game on Saturday afternoon. Even all that time in the sun didn’t squelch a pickup game from breaking out on the grass after a late lunch at Carl’s Jr. Rudy got so excited watching that he HAD to join in.
Get that kid a helmet and pads. He’d make a tough linebacker!
Rudy’s second day of school went well. He enjoyed several of the activities at school so much that he threw a couple little tantrums when teacher Christy started to wrap them up and move on to the next. That’s new behavior for our little sweet and happy boy.
He really liked painting and we are excited for next week when he’ll bring home his first masterpiece!
Shhhh....prodigy at work!
We’ve been on a pretty happy run of late–from the good news at the heart cath, to Rudy’s birthday, to the Heart Walk, and now the first week of school. Part of the fun is that we get to share this journey with so many people near and far thanks to this blog. Some of the most special people we get to share it with are families on similar journeys who are able to see the beauty and cause for celebration even in the midst of challenging circumstances. So we were especially tickled by a super-fun internet game of Udderball with Moriah (glad you’re back home!) and, as promised, a special birthday present from Gwendolyn. We aren’t planning any trips back to UCLA anytime soon, but when we do Rudy will be ready to weigh in on group rounds.
"Dr. Rudy, paging Dr. Rudy, we need you in the CTICU - stat!"
Thanks so much to these dear people and everyone else who continues to ride with us through all the twists and turns of the Rudy-coaster.
Rudy’s Birthday week includes dueling highlights. You already know about the actual birthday happenings and you’ve probably also caught wind of the Heart Walk celebration coming up this weekend. But wait, there’s more—tomorrow (Tuesday), Rudy will go to SCHOOL!
Life with HLHS has taught us to embrace the moment. There are so many unknowns on this journey that we’ve learned to live life with less of a future orientation than normal. That means that milestones like this can sneak up on us.
I didn’t think we needed to be reminded of how big a deal Rudy starting school is, but we got a vivid enough reminder of this last week as his IEP meeting. (In case your wondering, “IEP” stands for “Individualized Education Plan” and it’s what therapists, educators and medical professionals set up for special needs clients—each one of whom is unique.) Until now, the IFSP (Individualized Family Service Plan) sessions we’ve had have taken place around our dining table and all of the faces were the familiar and dedicated team from Tri-Counties Regional Center and NurseCore.
While Trish was more aware of what was coming, I had missed the detail that this IEP meeting was going to be at the Goleta School District headquarters, but shortly after arriving it was clear that a group this size wouldn’t have fit around our table. So it may take a village to raise a child, but it takes a coordinated multi-jurisdictional agency effort to educate Rudy! I think I counted 18 people—all there to discuss Rudy and what services he needed.
Let’s see if I can remember all of the agencies:
Tri-Counties Regional Center (gave their final report as Rudy graduated their program by turning three)
California Children’s Services (Rudy’s current PT/OT provider)
Goleta Union School District (our home district came and assessed Rudy)
Santa Barbara School District (where GUSD referred Rudy as he is non-ambulatory)
SB County Education Office (who oversees inter-district stuff and provides Special Ed support)
Over the two hours we were together: therapists and teachers shared their assessments and articulated goals; nurses clarified medical issues so insure safety and support in the classroom and on the bus; and specific equipment and schedule needs were identified so that solutions can be devised. Not every question was answered (and we probably didn’t know all the right ones to ask), but so much of the game here is to try things and see what can be worked out.
The reassuring thing is that so many very competent and dedicated people have their attention focused on Rudy. I’m not sure I’ll ever get used to that awkwardgratefulhumble feeling that comes when I see so many people going to such lengths for my child. To the nurses that never slumber, the skilled doctors who keep searching for ways to help him, and the friends that pray and continue to help in countless ways I now add this new team of dedicated people who are investing so deeply in Rudy’s development.
Stay tuned for the “first day of school” post coming tomorrow…
Rudy graduates from Early Start with honors (!) and says goodbye to OTR/L Kris and Child Development Specialist Gwen.
For our records, here are the results of Rudy’s final assessment at 36 months from Regional Center:
Fine Motor and Perceptual Skills – Approximate Age Equivalent (AAE): 12 months
Rudy spent the first half of his third birthday at the historic Dos Pueblos ranch to help set up for today’s big SBRM event! The predicted rain is no where in sight and it’s gorgeous! PTL!!!
Rudy already got a trike for his bday but I can’t resist bidding on this reading tee pee at the silent auction! Toooooo cuuuuute! Sent from my iPhone
Rudy's Beat 