After Rolf and Rudy’s late night return from the ER last night, Rudy slept in to almost 10am this morning! We skipped his PT and OT appointments and I got a call into Dr. Corazza’s office first thing. Dr. Corazza ordered an EEG test at 2pm and then a face to face with him at 4:30pm. After two trips to the ER over the weekend, I was glad we were able to follow up with Rudy’s neurologist right away. The EEG clearly showed that the seizures are coming from the right central part of the brain which is why the left side of his body is affected. Sunday night’s seizure didn’t last as long as Friday’s but it was unsettling in that it extended into Rudy’s left arm and leg – not just in his face as in previous episodes. Dr. Corazza increased Rudy’s daily dose of Trileptal from 3 and 4 mls per day to 4 1/2 mls twice a day (from 7 total to 9 total). We need to wait for a couple of blood tests to come back from samples taken in the ER…if the numbers are good, then we’ll stick with the current med but if the numbers some back bad, then Dr. Corazza wants to add another medication in addition to the Trileptal. We’re not super keen on adding more anti-seizure meds as they could leave Rudy feeling pretty doped up but we also need to get these seizures under control…especially since they seem to be getting worse. We’ll wait and see what the test results reveal and pray, in the meantime, that Rudy doesn’t have anymore seizures!
EEG fun (?)!
Our weekend was yet another manic bundle of really awesome highs and disturbing lows…the Santa Barbara Rescue Mission’s annual Bayou fundraising event on Saturday was a wonderful success and quite inspiring & at the same time our hearts were burdened for Rudy, of course, but also breaking for a Make-a-Wish/Heart family we’ve been praying for all week…their story was covered by their local news. Caution! It’s truly heart breaking but also such a vivid picture of grace and strength…Mia McDonald video. Please join us in praying for this family as they make their way back home to Utah…ugh!
I tell you…everything about this weekend makes us hug a little tighter and embrace the little moments that make a day special even more! Here’s a few from this past week…
Kickin’ it at Max’s hockey practice…Watching the DP drum line and cheerleaders at the Bayou!Livy’s Silent Auction favorite!Rudy’s contribution to the auction…Buddies
Thank you for your prayers this weekend…there is so much going on in need of prayer and knowing it’s all in God’s hands is truly comforting to me. 🙂 Bless you friends!
I don’t think our family has enjoyed itself more celebrating Rudy’s birthday this year. The Heart Walk was such fun because it demonstrated the community that has surrounded us. To give an idea, we bought sixty Rudy-Blue balloons to hand out to our walkers…and we ran out! After all the activity on Saturday, Rudy’s actual birthday passed rather uneventfully. As the schedule turns out, Rudy doesn’t have school on Mondays which serves him well as he usually sleeps in after weekends full of sibling fun.
It had all the makings of an uneventful, mellow day (and pretty much was) save for the last-minute call for his monthly visit to the lab. Turns out the only phlebotomist who can get to his veins was in so they called to get it in. I guess the birthday treat is that it only took her one stick, but I’m not sure Rudy saw the upside.
Seriously?! On my birthday?!. 😦
Our beautiful baby boy
Amidst all the activity that goes into celebrating Rudy’s birthday (it always falls on a really big week for us with the Heart Walk and the Rescue Mission’s “Back to the Bayou” Benefit), I try to take some time to go back four years into the blog posts to get a reminder of how far he’s come. Amazing how quickly all the emotions of the first week of his life can come back. (If you’re interested in walking down memory lane, click here) Forgive me in advance if we publish a few more looks back this week. The memories of it all (especially surgery day) are so visceral that even now they require some processing. Rudy’s come a long way and we’re so glad for the many people who have walked with us–whether you were there from the beginning or joined us later on.
The emotions of his diagnosis and birth were evoked even more yesterday as we learned the story of Greg and Kara Olsen of the Carolina Panthers who are right where we were four years ago. Praying for them as they walk the HLHS journey. You can watch their story here: video-heart-of-the-matter
The Heart Walk is just 10 days away and excitement is building…the Dos Pueblos drum line (of which Wilson is a member) will be helping to kick-off the festivities, the birthday cakes have been ordered, we’re very close to our fundraising goal and Team Rudy is ready to walk!
And we’re not the only ones…we had the fun opportunity yesterday of meeting the Westmont Warriors baseball team. This group of impressive young men has formed a Heart Walk team of its own and we thought introducing Rudy to the team would help put a local “face to the cause”. It was such a neat time and the “big baseball guys” were very sweet to our little warrior.
Honorary “Team Rudy” members! Go Warriors!!Rudy’s got quite an arm!
It just so happens that Rudy has been doing a little preparation of his own…check out the workout he’s been getting at therapy the last several weeks!
1st attempt…
After a little practice…
Rudy getting a round of high fives from some of the gals in the county education office down the corridor – to which he WALKED!!He’s so proud!
Although Rudy doesn’t have quite enough core strength to walk on his own yet, he sure is motivated to walk circles around the MTU (Medical Therapy Unit) with a little support! He is definitely on his way to walking the 5K Heart Walk…maybe next year! 🙂
In addition to walking, Rudy has been doing a little singing with his sister…
This week hasn’t been as low-key & stress-free as I had hoped but it has included a bit more summer fun…Rudy and I ventured out to Goleta Pier on Monday to watch Olivia and her fellow junior guards conduct the famed “pier jump”. It was thrilling to watch these kids face their fears, stretch themselves physically and walk away pretty excited about their accomplishment. Olivia was measured and stoic about the whole thing but I could tell she was pleased. Rudy was quite curious…he tried hard to figure out what was going on as he carefully watched the jumpers, the crowd of cheering parents and the guards posted in the water.
Happy on the pier…
Wilson saw a SB Zoo event advertised on the morning news yesterday for kids with special needs and their families so we decided to be spontaneous and take advantage of this neat opportunity to roam the zoo after hours. The zoo was open from 5-8pm for special needs kids and their families to participate in a variety of “meet ‘n greets” with different animals and zoo keepers. It was very sweet and especially enjoyable for Rudy…no crowds, easy access to the animal displays in his wheelchair and the unique opportunity to see a snake, raven and armadillo up close! The best part, though, was playing with the big sibs…
Getting some Wilson-love!Our zoo may be small by some standards but it’s big enough to host a Dinosaur! Duncan the Dinosaur came out to play…Max tried hard to smile for the picture with Rudy’s panicked right grip digging into his neck!! Ha 🙂
Rolf and I are so grateful to the SB Zoo for offering this opportunity to special kids in our community. It was surprisingly comforting to be at a public event with families like ours…I’m not normally bugged by the stares of well-meaning onlookers when we’re out and about with Rudy but I sure noticed NOT being stared at last night and it was nice. Even the kids commented that it was nice to see other siblings of special needs kids. I got the sweetest compliment from one of the other dads about how engaged and sensitive Wilson, Max and Olivia are…another reminder of how blessed we are that the big sibs genuinely
want
to participate in events like this that are clearly designed for Rudy and kids like him. I wouldn’t have blamed the big sibs for not wanting to go…but I’m sure glad they did…so is Rudy! 🙂
Love these kids!
The spirit of the evening kind of gave me a taste of what our Make-A-Wish trip to Give Kids The World could be for our family and that got me more and more excited…what a morale booster and formative experience that could be for all of us!! It’s dangerous to get too attached to something that could happen 6 months down the road…so I promise not to obsess but how fun… Ha Ha
(P.S. It’s 9:30am and Rudy is just now waking up from a long night’s sleep…I love summer!)
Rudy slept soundly last night and woke up all smiles after his episode and subsequent trip to the ER yesterday so he went off to school…:)
Based on the mild seizure he had last month and the series of seizures he had yesterday, it appears Rudy is no longer responding to his current anti-seizure medication (Keppra). The ER doc consulted with Rudy’s neurologist and sent us home with a new prescription for Trileptal. The ER doc was reassuring and is certain Rudy wasn’t experiencing any new stroke activity (based on the type of seizures Rudy had) but it sure would be nice to know why he’s seizing again all of a sudden. What was concerning about yesterday’s episode was the length of the seizures. Rudy began a mild focal seizure on the school bus on his way home from school and his nurse timed it at about 10 minutes. He continued with the mild seizure at home which traveled from the left side of his mouth, to his tongue and then back to include his mouth. He was pretty wiped and was left with a lazy left side and at one point his whole body turned blue which led to the decision to pack him up and meet Rolf at the ER. Although concerned, we were relieved he fussed at the prospect of putting on a hospital gown and getting onto the bed to be examined…he definitely knew where he was and that he didn’t want to be there! Ha Ha
I gotta give the big kids a grateful shout-out…Max and Olivia opted to stay home but were very helpful in getting Rudy in the car, out of the car when I thought we might need to call 911 instead, and then back IN the car when I determined I could take him after all. The scene was a little confusing and unsettling but the kids hung in there and did whatever I asked them to do without question! Wilson who was still at school had to arrange to get himself home and all were safe and sound when we got home from the ER just in time to reorganize and get to the high school for Wilson’s music dept. awards assembly. Rudy was so wiped and doped up on Ativan that he was content to sit in my lap during the assembly and barely flinched at the sudden bursts of applause…sweet boy!
So we find ourselves a bit preoccupied again and a little frustrated but I don’t want yesterday’s concerns to overshadow the neat milestone achievements Rudy had this week…like on Sunday when he experienced his first official Sunday School lesson at church…
…and again on Tuesday when he was particularly energetic at therapy and NOT content to stay in his little corner of the therapy clinic…his PT tried a little supported walking exercise!
We’re also super excited that Rudy mastered sitting up by himself from the prone position…check him out this morning…
So, thank you for your prayers yesterday especially! We are ever-grateful for our Rudy’s Beat community. Neurological concerns are scary but we are grateful that Rudy’s seizures are mild and he is quick to bounce back and for the good care we continue to experience at our local ER. There is much for which to be grateful!
BTW, we still haven’t heard any sleep study results but Rudy’s next heart cath procedure at UCLA is confirmed for Wednesday August 1st!
With the days counting down to the cath, Rudy’s been spending most of his time at home. We’re probably not as obsessive about it as we could be, but with all that goes into getting a cath date (lab and doc schedules) we’d hate to see any delays caused due to Rudy catching a bug. As it was perhaps the only weekend this year where we’ve had to endure a dose of that brutal Santa Barbara winter (read 55F with intermittent showers), he hasn’t been lonely indoors. So, I just thought we’d give a few glimpses of our regular weekend at home.
Rudy’s last day out was Thursday for school. His class, the “Bear Club”, went on a walk to the neighborhood market and the teachers spotted a little good luck gift to send him off with:
Thank you, Bear Club buddies!
Being home bound isn’t all that bad. Especially when you’re as easy to please as Rudy. Most days, he’ll go into the kitchen and find himself a cup to stick over his hand and carry around most of the day. Some days a cup is hard to find, but this time of year it’s pretty easy to find a box of Girl Scout Cookies in the cupboard. Rudy found one yesterday and, after quickly tossing aside the cookies, he held on to the box for several hours–even through his nap.
Nothin like a teddy box! So much for all the developmentally appropriate toys we were seduced into buying.
Housebound or not, we still expect the kids to help out with chores. It’s amazing how even Rudy can pitch in and be surprisingly helpful. Check out this video of him helping us polishing the kitchen floor.
Max was scarce this weekend as he wowed audiences in the GVJH production of 42nd Street. In between playing to three packed houses, he found time to entertain and educate his little brother in fine art of zerberts. Take it away, Max!
Thanks so much for checking in and for all the kind notes and comments. It was a full and fun weekend–stay tuned for the eventful week ahead.
Wow! March just barreled onto the scene with great force as our week has been non-stop full! Since I posted last week our family (or some combination thereof) attended the La Patera fundraising jog-a-thon, the Girl Scout Troop 50649 cookie booth outside KMart, the Dos Pueblos High Drumline’s first exhibition performance in Thousand Oaks, enjoyed a visit from our good friend from Wichita (and Max’s godmother) Susie, was inspired by and so happy for the 11 men and women who graduated from the Santa Barbara Rescue Mission’s residential recovery program on Saturday, went to Rudy’s cardiology and endocrinology appts, supervised 50 very energetic junior highers during final rehearsals for the school spring musical, finished a major kitchen remodel and prepped for a visit to L.A. this weekend to attend a friend’s wedding and celebrate Max’s 13th bday! And this was all in addition to the normal routine of school, work, therapy, etc, etc, etc.
It’s really no different than any other normal family of 6 trying to coordinate schedules and balance life together but there has definitely been a shift for our family in the last year from…making a concerted effort to create a sense of normalcy in our home to…”the normal stuff is happening whether you like it or not and you better jump in and go with it or get lost in the snowball!”. 🙂 Ha Ha It’s all good, though. It’s good for me to be busy, wake up each day with a healthy “to do” list and embrace the normal stuff as long as I don’t forget the unique stresses that lie just beneath the surface for our family. This was evident to us this week in a couple of ways.
First, in the midst of a particularly busy day, Olivia came to me and asked “Why was Rudy born with half a heart?”. Strapped for time, I responded with a quick “We don’t know, Olivia, there is no known cause for HLHS. It’s just the way his heart formed!”. With a pat on the head, I sent her off and proceeded with my “to do” list. Later that evening, I realized there might have been more to her inquiry and asked her what she was thinking about that made her ask that question. Immediately her eyes welled up with BIG tears and she said that she had been reading her Ramona book and she got to a part when Ramona described how much fun it was to teach her baby sister Roberta a whole list of specific things. Reading this made Olivia sad because she couldn’t teach Rudy how to do any of those things. Oh, sweet girl. I really felt her grief at that moment and understood completely! This led to a bigger discussion of all the wonderful things she is teaching Rudy and how lucky he is to have a big sister like her and that seemed to help but it was a reminder that the emotions are there…just under the surface ready to pop out when you least expect it…like when reading a book.
It happened to me and Rolf too…Rudy had his cardiology appt with Dr. Harake on Friday and we had a discussion this time about Rudy’s enlarged heart. This is typical with HLHS patients because the half-a-heart they do have is working so hard. I wasn’t surprised by the mention of it or even that concerned as I understand this is part of the game. I was even able to keep it all in proper perspective when Dr. Harake said it might be a bit larger but still within the expected range for Rudy’s condition and they’ll check it all out during the heart cath on the 21st. Okay, good to know…not to worry…it’ll be alright. Then we heard about another heart friend up north (a bit farther along in his HLHS journey) whose echo after a routine cath showed rapid heart failure! A scenario that hit a little too close to home and reminded us again that this is such an unpredictable journey where one can get broadsided without much warning and, BAM, Rolf and I spiraled so to speak. Of course, it looks different in each of us…Rolf becomes an insomniac and I get real weepy – able to tear up at the drop of a hat – and we both are unable to focus. Argh!!! Thankfully the emotional tide is turning and our little heart buddy is at home and stable but the whole episode was a stark reminder that the stresses are ongoing and do effect how we do life in our household. Heart caths may feel as routine as dental appointments for Rudy but they hold a great deal of emotion and concern for us which surface when you least expect it.
Of course, this makes doing the “life on the go” stuff a little difficult at times but part of balancing life is learning how to balance the “normal” with the “not so normal” and remembering to breathe once in a while. 🙂
There have been some neat encouragements this week as well…we saw a handful of people who hadn’t seen Rudy in a few months and all commented on how much Rudy has grown both physically and developmentally. Nurse Marie came back this week to take Rudy to school filling in for Nurse Meg who is sick and Marie was amazed at how verbal Rudy is now. Rudy’s former OT Kris came over to pick up some G.S. cookies and she too marveled at how verbal Rudy is and how well he is moving. Dr. Harake was happy to see Rudy standing with a little support from me at our appointment and Dr. Lifshitz said Rudy is looking better than he has seen him look before. It’s great to hear such encouragement and makes the achievements feel even bigger! Check out what Rudy started doing this week…
Okay, so this may not be an “achievement”…but it’s sure something I can’t do!
A big thank you, too, for the many encouraging words I received after my “mid-life crisis” reflections. I’ll respond to everyone eventually but thank you in advance for sharing your wisdom and love with me…I am blessed.
Here are a few other encouragements from this past week…
Gpa Dick would have been proud of Olivia's effort at her school jog-a-thon on Friday...she ran non-stop for 40 minutes and was very focused (just like Dad was when he ran). 🙂Fun with Susie-Q visiting from Wichita!Rudy kept pretty close to Rolf anytime he was allowed in the kitchen during the remodel...always eager to lend a helping hand!"I can do it."Yippy!!! Three months and two weeks after he and the boys gutted the kitchen, Rolf finished the remodel with great satisfaction! It's not only efficient and functional but really pretty too!! Thank you Rolfi!!!!!!!OT Julie had extra cleaning to do after Rudy's food therapy today...chocolate pudding on the floor and walls, oh my! I'm glad it was the clinic floor and walls and not the ones in my new kitchen!
I turned 46 years old yesterday. If you ask my kids, I’m old. If you ask my mom or older brothers, I’m young (…forever the baby in the family). In fact, if my dad were alive, he would have called me yesterday to say “No matter how old you get, you’ll always be my little girl” as he did every year on my birthday. Ha Ha Like alot of things, age is relative and it’s all in how you look at it, I guess. It does feel strange, however, to be in my “late 40s” officially and making a life-transition where it seems I’m “doing” less and “reflecting” more. I’m experiencing a bit of a mid-life crisis, I think, as I confront the realities of the aging process in a life half-lived (I hope!)…i.e. the need for reading glasses (my arm is no longer long enough to get by without them), unexplained stiffness in the morning (Wait! Did I go rock climbing yesterday?), perimenopausal symptoms, age spots, gray hair, wrinkles beyond the limits of “laugh lines”, etc, etc, etc. 🙂 Ha Ha Ha Stupid stuff really. Well, the physical changes are annoying but I’m actually grappling more with the non-physical realities like certain dreams and opportunities that won’t be realized…in part because of limited time in general, and in part because of the lifestyle changes we’ve made to care for Rudy. Regrets? No, not really because at certain crossroads in my life, I chose to pursue other dreams & goals and I consider caring for Rudy and his special needs a very specific calling from God that I gladly take on each day. I’m happy with my life…it’s just hard to admit that there comes a time when all the world ISN’T at your fingertips and there are certain things that just can’t happen in one’s remaining lifetime. I’m not feeling overly pessimistic…just realistic and challenged to keep it all in proper perspective.
The lesson I feel God is reiterating over and over again in this journey with Rudy is “perspective”…to not get caught up in the heavy details of life whether it’s concern for Rudy or the big kids, financial burden, hormone surges coming from the perimenopausal mama AND the teenager in the house(!), kitchen remodel fatigue or the “would haves, could haves, should haves” of middle-age but instead to keep an eye on the bigger, blessed picture.
Last month, Rudy was God’s object lesson in this on-going dialogue about “perspective” and Olivia provided this month’s reminder when she came home from her surf lesson last week. She explained how she caught and rode 5 waves but got caught up and tousled by the surf in several other attempts. When I asked her if she’s scared when she gets battered by the waves like that, she responded “No, I just pretend the waves want to play with me”!!! I love that! What a great outlook! Okay, so maybe it will be a bit of a stretch to pretend life wants to “play with me” when things are tough but I can choose to keep my head about me and not get caught up in fear. It’s all in how you look at it, right? Thanks Livy!
Medical Update: So, we’re down to just a few weeks before Rudy’s scheduled heart cath at UCLA on the 21st. Rudy sees Dr. Harake (SB cardiologist) on Friday and so far so good in keeping Rudy healthy before the cath. Please continue to pray that nothing will prevent the cath from happening on the 21st…lots of details are in place. We also have a date for Rudy’s next sleep study at CHLA…we’re scheduled for Monday April 16th. We have scheduled appts at UCLA that morning so we’ll make the most of a day in LA while we wait for the sleep study admit at 9pm later that night. I’m praying a successful sleep study will lead to quick decannulation so we can get that boy in the pool this summer!!! How fabulous it will be when Rudy is free to swim…if the way he kicks in the bathtub is any indication, I think he’ll be a great swimmer! 🙂
Here are some February highlights…
Rudy at the Rincon Classic Surf Competition earlier this month!Rudy and Wilson watching the Oscars.Gotta love the new bifocals!Rudy in the barrel at therapy today......there's lots of fun to be had in the barrel...whoooaa! Rollin' around in the barrel!Happy barrel boy!Goofy Rudy at school in the stander!
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!
Rudy's Beat 