Author: Trish

Happy Birthday Wilson

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!  🙂

 

MRSA in ‘da House!

We worked hard to keep Rudy quarantined and bug-free before the cath but it seems we couldn’t escape the hospital without bringing home MRSA!  The culture taken from Rudy’s foot wound tested positive for the nasty infection and Rudy is on the prescribed anti-biotic now.  He’s no worse for the wear and is a happy little infected one but he’ll need to stay close to home for another week due to the contact precautions.  I’m still waiting to hear back from his therapy clinic and school but I don’t think he’ll be allowed to go back until he has finished his 10 day course of antibiotic.  Poor guy…he’s already a little cabin-feverish.  As for the rest of us, well, we’re washing our hands a lot and avoiding kissing Rudy on the mouth AND the big kids are keeping far away from any diaper changing that goes on since being grossed out by the home health nurse who told them it’s easily transmitted through urine and fecal matter!!!  Nice!!

So, as our spring break draws to a close we’re focused on the added logistics of Rudy’s MRSA treatment.  The big kids seem pretty content with their spring break (and I’m grateful for that) but I’m wishin’ we had had the opportunity to do something special and out of the ordinary.  I guess Mama is a little cabin-feverish too.  🙂

 

Cath Follow Up

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!!!

Toe-cephus on the mend

 

Rudy teaching Oma and Opa how to use an IPad

 

Home Safe & Sound

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!

The Weight of the Wait

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.

Life On The Go, Go, Go

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!

It’s All In How You Look At It :)

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!

 

 

Dance Party!

While the big boys were gone to band practice at church last night, Rolf, Rudy and I were treated to an impromptu concert from Olivia.  Rudy started to bust some impressive moves and seeings how Olivia was dancing to a Jackson 5 classic, we thought it was only fitting to post it in memory of Don Cornelius who died this week.   The “Soul Train” definitely made a stop at the Geyling’s last night until Rudy lost his steam toward the end of the video!  🙂

Gotta love a good dance party!

Two New Firsts

Rudy experienced two new firsts this weekend and it was a fun, refreshing weekend for the whole family as well!  We enjoyed a day trip down to our old neighborhood in South Central LA on Saturday to see the Stanford women’s swim team swim against USC!  It was actually a first for all of us and even though Rudy didn’t like the cheering crowds or the unseasonable hot temps, he did get to meet our Stanford swimming god daughter, Maya, for the first time and liked her alot. 🙂  We had a great afternoon visiting with special friends we don’t get to see very often and watching some dog gone fast swimmers!  It was special for me and Rolf to see Maya, a top-ranked U.S. swimmer, swim in person since the last time we got to see her in a swim meet was about 12 years ago but it was especially encouraging to me to see this beautiful, young, confident woman for whom we’ve prayed the past 19 years looking healthy, happy and well-adjusted while using and enjoying her God-given talents!  We wish her great success in the upcoming Olympic trials…

Rudy, Rolf and Maya
So proud!
The cheering section! (We missed Sarah!!!!)
Planking on campus!

Then on Sunday, Rudy got his very first ride on the open road in his new bike trailer!  He was pretty excited from the get-go and loved it in particular when the big kids rode circles around us…

Happy, bike-riding Rudy!

We’re loving our summer-like weather but it’s making it very hard to go to school, work, etc…I think we’d all rather hit the beach!!!  🙂  Ha ha  Bye, bye January 2012 and a big welcome to February!  Blessings to you dear friends…

Noise!

The month of January is tough.  January has always made me a little blue with post-holiday let down and all but Rudy’s care is starting to add a whole other level of discouragement for me this time of year.  Always trying to keep things in proper perspective, I realize we’re still adjusting to our “new normal” and haven’t quite got our rhythm down yet for what I would describe as “annual cycles” but it’s clear I need to pay particular attention to preparing and budgeting for January.  I want to be careful in this post to NOT “poor talk” and give a false impression of our financial situation because it’s not really about money as much as it is about the frustrating process of constantly readjusting and tweaking life from our budget to our schedule to our expectations, etc…in an attempt to settle into a new and somewhat predictable normal.   Now that we have walked this road of HLHS for a few years I’m realizing that, emotionally, I start a new calendar year with both great expectation and anxiety as we begin to map out the year in regards to upcoming procedures for Rudy, goals we have for him and doctor appts we need to get on the calendar.  January ends up being jam packed with phone calls, appointment scheduling, making sure doctor orders and prescriptions are updated and deductibles are met!  I mentioned in a recent post that stacking appointments in one month is actually preferred because then we can enjoy a longer break between doctor office sweeps but it’s also emotionally draining for me and the added punch to the wallet when caught off guard can bring me to tears as it did at Costco last weekend when one of our many prescriptions that normally costs us $50 a month rang up for $165.00 this month because of our deductible.

It’s such a small annoyance in the larger scheme of things and yet it’s the little annoyances that seem to create the “loudest noise” in my life.  I find it so strange that I can stand tall and strong when hit by a boulder in life but then turn around and buckle under the pressure of a little thorn in the flesh!  I was thinking long and hard about this the other day and had to chuckle when I realized Rudy is much like this too.  Here’s a kid who has tolerated multiple surgeries and seriously painful interventions in his treatment but goes absolutely ballistic anytime his blood pressure is taken…who can sit next to a rock band without batting any eye but will get so worked up by the applause that follows he can go into respiratory distress!  It doesn’t make sense.  I thought he might grow out of his sensitivity to applause but that hasn’t happened yet so in the meantime I’ve found that if I can anticipate the applause then I can distract Rudy and keep him from melting down by holding him close and whispering directly into his ear.  I’ll say things like “Mommy loves you”…”You are such a big boy”…”It’s fun to be with you”…and soon the applause is over and Rudy is tear free!  🙂

The distressing noise in Rudy’s life is literal…the distressing noise in my life is a combination of calls to Apria, our insurance company and unexpected expenses to name a few and all of these things seem to happen in abundance (note to self) in January!  One obvious solution to all this is recognizing the trend and plan accordingly for next year but I’m also compelled to learn from Rudy’s example…just as I want so badly to distract Rudy from the noises that cause him distress, God wants to speak above the noise in my life too.  In my brokenness,or “disability”, God desires to pull me close when the distressing noise erupts in my life and whisper His words of encouragement and reassurance.  It sounds corny but it’s a helpful image for me and has prompted me to stop in the middle of it all this month and ask, “What does God want me to hear?”.  What bit of wisdom from His word is rising above all the details that drain and discourage me?

I heard Amy Grant perform a song at a women’s conference this past fall that touched me deeply.  Just as I was starting to process and articulate some of the feelings I just described, this song came along and expressed so simply and sweetly God’s place in it all.  Amy Grant hasn’t published or recorded it yet (although there are a couple of live performances of it posted on YouTube) so I hope this is okay but my friend Darlene and I shared the song at a Christmas tea last month and it was recorded so I’m sharing it below.  My performance of the song doesn’t do it justice but the message is clear…

“Be still and know that I am God.”   That has been my mantra for several months now…a good word to hold onto!  🙂

Speaking of calendars and details…Rudy saw Dr. Harake on Monday and his heart cath is scheduled for March 21st down at UCLA.  He and Dr. Dan will coil a bunch of collaterals and open up his aorta some more…most likely with a stent but Dr. Harake may choose to do another angioplasty.  The one drawback to a stent is that it doesn’t grow so the stent will need to be replaced as Rudy grows.  We’re okay with it either way…whatever is best for Rudy at the time of the heart cath!  Dr. Harake’s marching orders to us as we left his office was to keep Rudy healthy between now and then!  Kind of a tall order this time of year but we’ll do our best…please pray with us that Rudy will be a healthy boy this winter and nothing will happen to postpone the heart cath.  Thank you dear ones!

Ever Grateful…

[Lyrics to Amy Grant’s “Be Still”]

You made me, You know me, You’re able to show me who I am and what You made me for.

So I’ll turn off the tv, my cell phone and all the screens and other things that fill my world with noise.

‘Cause I know there is more to living life than what I see and You know in the quiet I might find you and believe…

You say, “Be still and know that I am God.   Be still, be still and know

Be still and know that I am God.  Be still, be still, be still.”

You made me, You know me, You’re able to show me who I am and what You made me for.

I’m not used to listening, I’m curious…wondering…can I really hear Your voice?

‘Cause I know…