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…

USC2 — The cheering section! (We missed Sarah!!!!)

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…

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…

A Special New Friend

We met an impressive young man on Saturday at a fundraiser here in town for Camp del Corazon (www.campdelcorazon.org). Camp del Corazon is a summer camp experience on Catalina Island for kids ages 7-17 living with heart disease. Many of Rudy’s nurses and doctors in the CTICU volunteer their time as counselors at the camp so we look forward to the day when Rudy is old enough to go and experience cool activities kids with heart disease don’t usually get to do.

Our new friend Lucas is a regular camper at Camp del Corazon and shared how the camp has enriched his life with unique experiences and lifelong friendships with kids and counselors who have walked a similar path. It was extremely encouraging to talk with this confident and articulate 14 year old who, like Rudy, was born with a serious heart defect, spent most of his first year of life at UCLA, had a trach until he was 16 months old and a feeding tube until he was 3 years old. Lucas is so passionate about the camp that he plans to become a counselor when he is too old to go as a camper. We did the math and realized he’ll be a counselor when Rudy is eligible to go for the first time so he said he’ll save Rudy a spot in his cabin! 🙂 Thank you Lucas for being willing to share your story and encouraging families like ours who find it hard sometimes to look past today. Meeting you gives us a vision for a quality of life Rudy could have in his future. Blessings to you and your family! We’ll see you at camp… 🙂

photo 1 (3) — Rudy's future camp counselor!

If you have a minute, here are a couple of camp videos that are awfully touching…

Gaining Some Ground…

swinging fun — Sunday's afternoon visit to the park!

We had a nice, uneventful trip to UCLA this week to check in with Dr. Woo (pulmonology). There isn’t much to report as her staff is still working on getting authorization from our insurance to schedule the next sleep study…the process seems to be stalled a bit so I’m praying that paperwork will get moving and we get the sleep study on the calendar soon. I’m not optimistic Rudy will pass the study this time but if we can get it done, Dr. Woo might be more open to proceed with decannulation regardless of the outcome. Being new to his team, she is reluctant to give her consent to wean Rudy off the trach without a successful sleep study putting Rudy at potential risk which we appreciate. But we also don’t want to wait another year to proceed if he’s not dependent on the trach and simply unable to settle down enough to pass the overnight study (which is our suspicion).

While we were on campus, we stopped to check in quickly with Rudy’s surgeon and the staff on duty in the CTICU. We were happy to see Dr. Brian, Dr. Robert, & Nurses Vicky and Kateri but it’s also hard to believe that we’ve been gone so long that many of the faces in the unit Rudy called home for 7 months are new and unfamiliar. We have two more appointments tomorrow with Drs. Kelts (GI) and Corazza (neurology)…both are routine 3 month appts so I don’t expect there will be anything new to report there either.

In the midst of all these appointments with his specialists, Rudy keeps plugging away at school and therapy and we continue to see small but significant steps forward. Rudy was fitted today in therapy for a stander…he wasn’t too excited about it at first but was soon distracted by his fun puzzle and stood upright for a little over 30 minutes. It’s a piece of equipment he’ll use at school and possibly something we can use at home periodically.

We also saw a big step forward in Rudy’s interest in food this week. Back in early November Rudy discovered his tongue and a love for ranch dressing! He was particularly fond of the ranch dressing at The Habit and was happy to demonstrate what a big boy he was to lick some off Daddy’s finger…

On Monday he put food to mouth all by himself for the first time!!! This exciting milestone occurred at Chipotle in Westwood after our appts at UCLA!!! Gee, I wonder what great achievement will happen at tonight’s restaurant of choice? This kitchen remodel seems to be beneficial to Rudy’s oral/food therapy!

The steps forward can seem slow in coming and rather small in the larger scheme of things but we sure don’t take for granted the significance of Rudy licking his lips or tolerating a small taste on the tip of his tongue. It won’t be long and he’ll be eating an In ‘n Out Double Double while STANDING around with a posse of friends! Ha 🙂

A New Year Begins…

FINALLY! We’re back online…our internet connection has been down for the past 5 days and you don’t realize how much you depend on the internet until it’s gone!!! 🙂 I missed wishing all you dear hearts a very happy new year so let me be the last to say “Happy New Year!!”.

We had a low key but wonderful second week of break which included some good progress on the kitchen remodel thanks to Rolf, a visit to the movie theater, the zoo and a trip for Max and Rolf to Arizona to see Stanford play in the Fiesta Bowl! The kids are all back in school today, all the Christmas decorations (except for the Christmas tree) are packed away for next year and it’s time to look ahead at what’s to come after a glorious break from regular life.

“Regular life” in the Geyling household includes 10 doctor appointments this month alone!!! Not a string of routine appointments I’m looking forward to but it’s almost easier to just pile it all on at once and then be done with it for a few weeks. We head down to UCLA on Monday to see the pulmonologist and hopefully get an update on the next sleep study plan so we can move forward on weaning Rudy from his trach this year. We also see Dr. Harake next week and possibly finalize a date for Rudy’s next heart cath. It’s currently slated for March but if Dr. Harake feels Rudy needs a stent, he may shoot for an earlier date. Either way it will be good to check in with Dr. Harake and see where we stand.

In general, Rudy seems to be doing very well. He’s currently fighting a little cold but nothing too debilitating and he’s happy. In fact, he has been more affectionate and physical lately. Rudy is alot of wonderful things but he is definitely NOT a cuddle-bug. He never did like to be cradled and he doesn’t like a long embrace unless it’s in the form of wrestling with his dad and brothers! Ha He won’t snuggle with you on the couch for very long and he’s most comforted by being alone in his crib when he’s upset or hurt. Because of this, he surprised me a few times this week when he initiated the cutest “lion-cub” type hugs. I’m not sure if its a developmental thing or just a fun new “trick” he’s discovered but it sure is cute…I hope he keeps it up.

Rudy had some great moments with the big sibs over the holidays too and every one I witnessed made my heart swell. I’m just so impressed by the big kids’ ability to include Rudy in their day so effortlessly whether it’s as simple as stopping to acknowledge him in his day crib with a goofy game of peek-a-boo when they walk through the room or as intentional as gearing him up for a bike ride in the cul-de-sac. I’m also struck by how much Rudy is on their minds when they aren’t with him. Max, Olivia and I went to see the movie “We Bought A Zoo” (a very cute movie, btw) last week while Rudy stayed home with Wilson. I sat between Max and Olivia and half way through the movie Olivia leaned over and whispered in my ear “Rudy would love living with all those animals”. She’s right. And then at the end of the movie there’s a scene where the zoo visitors have to climb over a fallen tree to get to the entrance and Max leaned over to whisper in my other ear “Rudy wouldn’t be able to get past that tree to the zoo”! He’s right. I hear the kids verbalize observations in relation to Rudy quite a bit and I’m so grateful for that. I’m sure we’ve said this before on Rudy’s Beat but I really am profoundly blessed by the many ways the big sibs have embraced Rudy. It makes my heart literally BURST with both pride and worry all at the same time. What would it mean for the big kids if Rudy didn’t survive? I try not to go there very often but it’s hard not to worry about such things.

Well, before we shift gears into 2012 completely, here’s one last look at the end of our 2011…

One of the highlights of 2011 for Olivia was catching her first waves surfing!

One of the highlights of her entire life was getting a package from Lakey Peterson two days before Christmas which included this autograph picture and USA surf team cap!!! My oh my, you should have seen the look on Livy’s face when she realized who the package was from as she is a really big fan! We’re not quite sure how this connection was made but we have a feeling we owe our friend Monte a BIG thank you! If you don’t know who Lakey is, you can check out this link but, more importantly to know, she’s the granddaughter of Herb Peterson. Who’s Herb Peterson you ask? Well, he was the one time owner of the Santa Barbara area McDonalds and inventor of the Egg McMuffin of course!! It just so happens that he’s remembered every year on his birthday JANUARY 5th with $1 egg mcmuffins so you know where I’ll be tomorrow morning!! Ha Ha

Lakey fan — As described by Olivia, one of the best things she's ever received for Christmas!

I've been going to the Santa Barbara Zoo for over 4 years and this is the first time I've seen the snow leopard "out and about"!!! Very exciting.

Stella 2 — Sadly, she's more interested in Rudy's toys at this moment but he is undeterred in his rare pursuit of a hug.

Fiesta bowl — We still love the Cardinal, but are still hurting from the missed field goal...

And so we say goodbye to 2011 and I pray, as we stand at the threshold of 2012, for God’s continued grace and peace for us all! None of us know what 2012 will bring but I’m grateful none of us need to walk it alone. Great blessings dear friends…thank you for all the blog comments of 2011…we read and are encouraged by each one! Happy 2012!!