Rudy saw Dr. Harake (SB cardiologist) yesterday and he would like to get Rudy’s next heart cath on the calendar for sometime in July. Right now the available dates are possibly July 18th but it will most likely be scheduled for July 31st or August 1st. He hopes to go in and devote the whole time to coiling collateral veins so it could be another long session in the cath lab for all involved. For some reason, I had it in my head that we would pursue the next cath in the fall so I was a little surprised by the summer target date…it doesn’t really matter when we do it but this will be a helpful date to solidify as I work to chart out our summer schedule. We don’t have any big travel plans but between Wilson’s summer school classes at SB City College, Max’s desire to participate in a theater camp and Livy’s plan to live in the water, the summer is already starting to fill up! Ha Ha
We’ll also need to look closely at any plans we may have to wean Rudy off the trach if he passes the sleep study. It’s so much easier to anesthetize and vent Rudy during surgical procedures when he’s trached so it could be wise to hold off on weaning him with a procedure coming up. There are a ton of “what ifs” in that scenario and may even be a moot point if he doesn’t pass the sleep study so we won’t worry about it now but, I admit, the thought of delaying decannulation is disappointing. We’ll see…
Rudy sees the urologist tomorrow so we’ll have more to report then…in the meantime, have a happy day!
As suspected it took me a few days to recover from last Monday’s trip to Los Angeles and short night’s sleep…Rudy didn’t seem to skip a beat! Ha Ha It’s kind of sad when your son with half a heart has more energy than you do. 🙂 Needless to say, I’ve had a quieter week trying to catch up on life here at home. We typically don’t get the sleep study results for a few weeks so we need to wait a bit but I’m so relieved they were able to get a good stretch of data during the study that I can live with whatever the outcome may be. I did, however, buy this floatie swimsuit for Rudy at WalMart on our way home from the hospital in faith that he’ll be able to swim in our pool this summer!!
Speaking of the pool, yesterday was the official opening of the 2012 swim season here at the Geylings! The water is FREEZING but that didn’t stop the big kids from spending the afternoon engaged in swimming and pool-related activities!! Even Rudy took a spin on the stand-up paddle (SUP) board…
credit to Greg Lawler for this one!
This next week is a full one with our monthly visit to the cardiologist and our consult with a urologist in town to discuss Rudy’s, shall we say, lopsided bits and pieces. His undescended testie may require surgical intervention but we’re praying the “ball will drop” as our friend Kim so eloquently put it and all will be well down under for the sweet boy. We’re looking forward to our annual tradition of hosting the kids’ teachers for dinner (we get to include Rudy’s teachers this year!!) and a dear friend’s wedding here in town. I love weeks that are loaded with things to celebrate!!! Thank you again, friends, for sharing in the celebrations and concerns of this journey with us. We’ll update as soon as we hear anything about the sleep study results. Blessings…
Grandma Jo headed back home to Kansas yesterday and I have today (Sunday) to catch up on some paperwork and pack for Rudy’s and my trip to L.A. bright and early tomorrow. Rudy has an appointment with pulmonology at UCLA tomorrow morning and then his sleep study at CHLA Monday night so we plan to make a day of it and hang out with some friends in between! 🙂 It will be a long day but my goal is to keep Rudy up and active ALL DAY so he’ll be too exhausted to fight the sleep study. I don’t know, though, we may be fighting the grumpies with Rudy all week even without the sleep study since he’ll be going through “grandparent withdrawal”! With Oma & Opa and Grandma’s visits happening back-to-back, Rudy has had the luxury of non-stop grandparent attention for the last few weeks! This won’t be an easy week for him going cold-turkey and all. 🙂 To add insult to injury, our poor little guy gets to add another specialist to his long list…Rudy’s pediatrician feels there may be a little problem (nothing serious but could require surgery) with his bits and pieces and wants us to take him to see a urologist. I’ll call to get that appointment on the books when we return from Los Angeles…for now, our focus is Rudy’s third attempt at the sleep study. Please pray he’ll cooperate tomorrow night and the findings will be clear. Our hope is that the sleep study results will show he is not dependent on his trach and therefore ready to wean off of it. It seems to us that this is the case but there was some question last time as to whether or not Rudy was expelling enough carbon dioxide so we hope these intricate measurements are able to be captured and we’re left with no questions. We’ll keep you posted and we thank you for your continued prayers for these tedious details. Continuing on in this journey…one day at a time.
Here we are at the start of another week and it is a particularly bright Monday as we celebrate Wilson’s 15th Birthday!!! Happy Birthday Big Boy!!
We didn’t have much to report this past week on the Rudy front as he continued to recuperate at home with a modified schedule. He has just one day left on his antibiotic and his foot wound, though severe, is definitely on the mend. Rudy has been keeping busy with Grandma Jo since her arrival on Tuesday and is amazing her with his energy level. 🙂 Spring finally sprung in Santa Barbara…just in time for Easter! After several weekends of wet, gloomy weather, the sun broke through this week and Rudy enjoyed a bunch of outdoor time on his trike. He was able to return to school on Wednesday but didn’t go back to therapy so this week will be his first full week back in his normal schedule. Unfortunately he’ll have to miss another couple of days next week due to his scheduled overnight sleep study down at CHLA on the 16th but that shouldn’t require any recuperation time once we get home. 🙂
Even though our schedule was a little quirky last week, we were able to enjoy some special holy week events that culminated in a wonderful Easter celebration yesterday. The highlight of the week was Olivia’s baptism at our church’s sunrise service! A cherished time, indeed. It’s hard to believe Easter is now behind us and summer break is less than two months away…the official countdown to summer is on! Ha Ha
We are grateful to be past this latest heart cath and settling back into that stretch of time between caths that feels a bit more “normal”. We were saddened on Friday to hear that our little friend Daisy is battling another cancerous tumor…her third in three years. So, as we wait in quiet limbo with Rudy, we ask that you add Daisy to your prayer list as she gears up for another surgery this week and treatment yet to be determined. Her joyful faith has encouraged us in our walk with Rudy and we pray for God’s continued healing and comfort for Daisy and her family.
Here’s a little recap of last week’s goings-on:
Fun with Grandma Jo!Climbing trees with Maxo...Olivia's baptism on Easter morning!Happy Easter from Rudy and Many Blessings from our risen Savior! 🙂Happy "6 months until you get your learners permit" Birthday Wilson!!!
I actually have a few more pics I’d like to share but our internet connection is SO BAD I seriously can’t muster up any more patience to download any more pics!!!! We’ll be changing our service on Friday so be ready for some speedy posts real soon! Ha Ha Bless you all and thank you for your friendship and encouragement. Please don’t forget to pray for Daisy! 🙂
Thanks for all the funny and helpful comments about Rudy’s foot…we watched Toe-cephus carefully all weekend and got Rudy in to see the pediatrician yesterday. As we suspected, it appeared to Dr. Abbott Sr. to be a pressure wound from the IV wrap. He didn’t suspect it was infected but took a culture sample just to make sure. It looks ugly but it’s on the mend.
We saw Dr. Harake today for a follow-up to the cath. He did an echo and we discussed Dr. Dan’s notes from the cath lab. Dr. Harake explained again that there are several variables that all need to show improvement before Rudy would be considered for the Glenn…variables that include pulmonary pressures, ventricle function, lung ventilation, etc. Although all the variables are not yet aligned, we are slowly seeing improvement in most of them so our patience is paying off. One thing that is for sure in the meantime is the need to coil as many of the remaining collateral veins as is possible. We’ll give Rudy time to recuperate from this procedure but Dr. Harake feels we should get the next cath on the calendar within the next several months for a marathon collateral coiling. He also feels that now that the Sano Shunt is opened up, there isn’t the need to stent the aorta at this time. There is greater risk in stenting the aorta than not at this point so we’ll wait.
So, with it being spring break here, we’ll rest up and lay low the rest of this week. Oma and Opa left yesterday and the big kids are off in all different directions having fun so Rudy is a little lonely. Luckily Grandma Jo is next on the list to visit us next week so he’ll soon have the undivided attention of a grandparent again. Ha Ha
Thank you for your prayers and well wishes. We’re still feeling scattered but grateful. Happy Spring Everybody!!!
Ahhhhhhh, we are headed home after a restless night’s sleep and we’re all pretty grateful we’ll be sleeping in our own beds tonight! Rudy’s discharge went pretty smoothly this morning and after an echo, a check-in with one of the cardiology fellows and a visit from Dr. Rick, we were on our way by 1pm.
As Rolf mentioned briefly yesterday, the cath results are favorable. Rudy’s lung function is, indeed, improving. He’s still not a Glenn candidate but, like last time, he is heading in the right direction! One report that surprises us in particular is that the O2 sats coming out of his right lung are measuring in the 90s! To put things in context…when Rudy was diagnosed with his chronic lung disease and put on a continuous supply of oxygen in June of 09, his O2 sats coming out of both lungs were in the low 70s (meaning that the blood coming out of the lungs was only 70% oxygenated when it should have been 100%). Over the past two years, we have seen gradual improvement in the left side to where it reached the upper 90s last fall but the right lung was still measuring in the 70s…this made sense because the right lung saw the most damage during Rudy’s battle with the chylous fluid in his chest cavity after the Norwood surgery in 2008. Well, being patient has paid off as it looks like the O2 sats coming out of both lungs are near normal. This is thrilling news and an indication that the lungs are slowly healing. Dr. Dan even questioned why we still have him on oxygen!! In follow-up conversations, no one is willing to dc the supplemental oxygen at this point but it’s definitely something to keep an eye on!
Rudy’s pulmonary pressures are still too high for surgery but better than the numbers last fall so, again, there is reason to celebrate.
Rudy’s heart function is stable…it is enlarged as Dr. Harake mentioned in our last office visit but Dr. Dan didn’t make mention of it being a problem at this point. Our biggest battle right now is to keep the blood flowing while we wait. The 5mm Sano shunt that Rudy’s surgeon, Dr. Brian, put in during the Norwood procedure has gradually gotten smaller over time as tissue encapsulates it. Even if it wasn’t getting smaller, the team would usually expect kids to outgrow these shunts–there are some who marvel at how Rudy hadn’t already grown out of it since so much time has passed since the Norwood. Yesterday’s cath showed that it was down to 1mm–very small by any standard (we found it hard to believe them when they told us not to worry that it was all of 2.6mm a year ago.) Drs. Dan and Harake first attempted ballooning the shunt to expand it but that didn’t work so they ended up implanting two stents and got it open to 4.5mm. This will keep the blood flowing between the heart and lungs and buy us some more time. Ironically, they did not balloon or stent the aorta as originally planned. We were under the impression that stenting the shunt was a more pressing matter to address. I’ll have to ask Dr. Harake more about that at our follow up echo next week.
Lastly, Rudy’s body is continuing to forge it’s own answer to the lack of passageways for the blood to flow by producing new collateral veins. I’m still amazed at the human body’s ability to create these webs of alternative routes but the collateral veins create problems. In order to have a successful Glenn down the road, the Drs. need to be able to control where the blood flows and these collaterals that are trying to serve a purpose end up becoming an inefficient way for the blood to circulate and weaken the whole system the docs are trying to construct. As a result, Drs. Dan and Harake coiled a bunch of them yesterday (literally with coiled wire) and even used a special $4000 glue for one particularly large collateral. Unfortunately, there are many, many more that will have to be coiled down the road but they got the big ones for now.
As always, we are blown away by and so grateful for the great care Rudy is getting and walk away from this procedure grateful to God for His work in the healing that is happening. We continue to walk one baby step at a time! Thank you for the many prayers offered up for our boy and family. We are so relieved to have this one behind us and by the look on Rudy’s face as we drive into our cul-de-sac, I think Rudy’s relieved too! 🙂 Blessings dear friends.
A "not so spunky" Rudy leaving Westwood...Livy got Rudy set up with Toy Story 3 when we got home...so sweet!
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.
It’s hard to describe the feelings that come with the countdown to a hospital date. The March 21st cath was scheduled on the books sometime before Christmas. When it’s months away, it feels kind of good to have a milestone to shoot for–an event where there may be some progress, some new information and maybe a new game plan. But the closer the date looms, the more ominous it gets. At about a month out, Trish and I both notice that things start getting more complicated. There are times when I just wish it would come so we could be done with waiting–and then I remember that this involves Rudy getting strapped to a table, needles, anesthesia and a bunch of instruments getting stuck into a very delicate beating heart. No matter how balanced one tries to be, it’s unavoidable to get your hopes up that it will end with a good report–maybe because the bad reports still sting so badly even when you think you did the best you could to prepare for the worst and not get your hopes up. As a friend recently wrote on her blog, you can get “under-sensitized” on this journey and go into it thinking “No big deal. It’s not surgery. It’s just a cath”–losing sight of the fact that no normal parent in their right mind would be dismissive of this.
There’s a weight that comes with the wait. It starts heavy and just grows. Not sure there’s any way to lighten it but having a full schedule to occupy us sure helps. At our best, it feels like we’re being defiant and not letting this weight crush us from living our lives. Or maybe we’re not all that tough and it’s just fear driving us to do anything we can to distract ourselves. It’s hard to come up with ways to lighten things at 4am, but it’s surprising how even in the midst of an otherwise fun and consuming activity, the reminder of what’s on the horizon can hit you with a pang, a gasp or a shiver.
That brings us down to one week to go, when all of this stuff can cycle around in your brain at warp speed. I think we do a pretty good job of holding things together, but to be honest there’s a lot of turmoil just under the surface. Productivity in the house and work goes down as it gets increasingly hard to focus. Emotions cause you to say things you might not normally say, or misinterpret what someone else might be saying. While staring into space is not all that constructive,a few stupid spousal spats make the case that it might have been a wiser activity to maintain. The whole intensity is raised a notch when it just so happens that several of the families we’re close to in the blog world have all had hospital episodes this week. Paxton had a big surgery today. Owen had a cath this week. Josh had one last week. Moriah’s headed in for some stuff this week too. Always a comfort to know you’re not the only ones going through this stuff, but with that come the twists and turns that anyone walking with someone in these circumstances feels.
That’s not to say it’s been all that somber. Life goes on. There’s been good reason to have fun and we’ve drunk deep. The weight’s there–not sure there’s much we can do about that. So instead of thinking too much about whether we’re acting in defiance or running in fear, we’ve had fun just doing life. Funny is still funny and fun is still fun. What’s coming is coming, but there’s still such beauty in life.
Max turned 13. All that charm now unleashed with true teenager cred! Life and weekends are so full right now we really couldn’t schedule a party (and he wasn’t so sure 13 yr olds do parties), but since we had to be in LA for his birthday we made an adventure. He got to choose our lunch stop so it was our introduction to “Fab Dogs” as seen on Diners, Drive-Ins and Dives on the Food Network. More ways to have a hot dog than you ever imagined. All kinds of nutritional wrong, but as Guy Fieri would say “FULL THROTTLE!”
March 10, 2012 - Max's 13th Birthday lunch at Fab Dogs in Reseda.
Our primary reason for being in LA was to celebrate Lisa and Daniel’s wedding! A joyful day with a family that’s very special to us. Livy was very honored to be the flower girl and fulfilled her obligations beautifully. Trish was asked to sing and Wilson and Max backed her up for a memorable performance.
March 10, 2012 - Congratulations Lisa and Daniel!!! Good job flower girl Olivia 🙂
Max’s birthday celebration continued the next day with a stop at Universal Studios.
March 11, 2012 - A belated birthday celebration at Universal Studios Hollywood!Rudy was restricted from going on many of the attractions at Universal Studios because of the pyrotechnic special effects and jarring movements so he and Trish made the rounds to many of the characters. Uh, yeah, he wasn't a big fan. 🙂
Back in Santa Barbara, the events continued:
March 12, 2012 - Girl Scout 100th Birthday! Rudy loved being with the girls in the park but was NOT keen on the council-wide friendship circle ceremony!
Down time? Not that much right now…but the daily routine can be pretty rich:
Rudy and his gal pal Stella...can't miss an opportunity to post these two cuties together!Rudy going to school this week..."hands on the window" is a daily bus ritual.
More activity to come this week as Oma and Opa are about to land and they’ll find that taking interest in their grand kids will involve making some choices between the Jr. High Musical, drumline performances, surf lessons, an elementary school track meet, a church talent show and the regular Rudy routine.
We appreciate your prayers for our family as we count down to next Wednesday.
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!
Rudy's Beat 