Heads Up!

Rudy working on neck control during therapy

The big boy had some “tummy time” for the first time in therapy yesterday and I think he liked the sensation of his head held high without any support. He beared the weight himself and was pretty comfortable as long as his fist was stuffed in his mouth!!

A couple of other noteworthy milestones is that Rudy now has a tooth on top to join the two that sprouted on the bottom…one tooth closer to In n’ Out! And his right foot is finally free of his wound dressing as the last scab from the IV potassium burn he got back in late April during hospital stay #2 fell off this morning. Nurse Jane was impressed at its progress when she came to check on Rudy last week and affirmed us for making it through the 2+ month healing process without any infections or complications. The human body amazes me in its ability to heal and Rudy’s body especially as he has had so many wounds from which to heal. I’m struck by the number of scars on his little body and am led to pray that the physical scars far outnumber the scars of the heart…that, although he faces daily physical challenges, his life will be marked by a spirit of genuine joy and optimism.

Rudy isn’t very good at “Hide ‘n Seek”

Well, we said goodbye to G’ma Jo yesterday which marked the end of our “month o’ grandparent fun”. Although Rudy is definitely missing the extra Oma/Gma lovin’ he recieved, it was clear yesterday that he certainly isn’t deprived of hugs and kisses because Wilson, Max and Olivia gave him a continuous supply of both as they were in and out all day at various activities and adventures. The way they were carrying-on, you’d think they were Rudy-deprived! Ha Ha It was so cute at one point, Rudy was asleep in the living room and at different times all three kids walked through the room, stopped to look at Rudy sleeping and made the comment that he is the sweetest baby…’so glad we’re all in agreement! 🙂

Rudy had another great week of therapy here at the house. We continue to work with him on grabbing for objects, head and neck control and turning onto his side. It’s a little staggering to think about all he has to learn but it feels good to have a plan and be working toward specific objectives. As always, “one day at a time”. Rudy is so blessed to have three older sibilings ready to help him learn about all kinds of things. The other evening Rolf went to Rudy’s crib to give him his 6 o’clock meds and was a bit startled to find he wasn’t there! Rolf called out “Hey, where’s Rudy?” and proceeded to follow the long trail of oxygen tubing that extended down the hallway and around the corner leading into Wilson’s room. Rolf found Wilson giving Rudy a tour of his room highlighting his dragon posters, bookshelf of spy novels and history books, his drumset and bins of toys in the closet that we are now saving for Rudy’s use in the not-so-distant future! Having his oxygen tubing long enough to reach any room in the house is very convenient for us but, we discovered, puts Rudy at a severe disadvantage when playing a game of “Hide ‘n Seek”. He’s not to worry, though; he won’t be tethered to the concentrator forever!

This next week will be his first “dr. appt.-free” week since we brought him home!!! Yippy!! It looks like we have been approved for a few hours of respite nursing care each week through the Regional Center (love them!!) so my focus this week will be to get the scheduling for that set up and in place. Slowly but surely things are coming together and we are grateful.

One last big thank you to all the grandparents for making the trip out to California this month…an effort we don’t take for granted! As always, memory making moments…

More Photos

Just as I was posting “Full Hearts” last night with a few of the dedication pictures, Greg Lawler posted a slideshow on his website of ALL the dedication images! If you’d like to see more, here is the link: http://www.zinkwazi.com/?show=2009_rudys_party

Thank you Greg!

Full Hearts

We had a special Father’s Day yesterday…we took advantage of Gma Jo being here and left Rudy home with her while the rest of us went to church together (we missed Rudy and Gma but it sure is alot easier to maneuver through a crowd without Rudy and his gear). We stopped for, you guessed it, In ‘n Out for lunch afterwards and took it home to enjoy a patio picnic. Rolf got a patio lounger for Father’s Day and was ordered to sit in it with a good book for a bit of the afternoon. He felt pretty guilty “wasting” a perfectly good “house project” day until he was reminded of the numerous weekends at the hospital when he longed for a lazy Sunday at home! After a fun, family walk around Lake Los Carneros to feed the ducks and climb trees, we feasted on bbq’d tri tip, veggies and Gma’s yummy potatoes. We have a lot to celebrate in Rolf…his humor, playful spirit, faith, physical strength and sensitive creativity all translate into the way he parents and the kids are all able to articulate why they appreciate their dad. Max definitely appreciates his dad’s playfulness, Olivia told me as she made her dad a card how much she loves her daddy’s rose garden (she delights in the roses he cuts for her to brighten up her room) and Wilson finds security in Rolf’s support. I fell in love with Rolf all over again when he became a dad for the first time…and then again with each addition! How grateful I am to be partnering with him on this road called “parenthood”.

: Feeding ducks on Father’s Day

So, today is the start of another week and Rudy had his first therapy session with Gwen from the Regional Center. It was a great session…Rudy lasted a whole hour, however, Gwen and I are convinced he played possum 30 minutes into the session. After an exercise he clearly did not like to do, he closed his eyes and froze for a minute. When we stopped talking, he peeked to see if Gwen was still around! Ha Ha He’s no dumby!! Rudy is starting off with two sessions a week and I’m encouraged he’ll make fast progress…evenmore with therapists Max and Wilson around. The boys took note of the “games” Gwen played with Rudy and she encouraged them to work with him too…needless to say, Rudy responds pretty enthusiastically when the other kids are involved!

Thanks to Greg Lawler, we have some pics to post from the dedication…stills certainly don’t do the whole evening justice but, once again, Greg’s ability to capture an experience is evident. We treasure the time in our hearts and are deeply grateful for all that God has done in Rudy’s life so far.

A BIG Thank You to Santa Barbara Community Church for hosting our evening, the Santa Barbara Rescue Mission Women’s Auxiliary for the yummy reception, the program participants and our guests for making the evening so rich and all of our “far away” family and friends who were there in spirit. Our hearts truly are full!

Saline, anyone?

Ah-Ha! EUREKA!! After a search for sterile saline that lasted a few weeks and led, ultimately, to the discovery that it could only be acquired via a prescription and cost $47.00 a liter, our case of saline arrived today via UPS!!! Twelve liters for the price of two…I LOVE the internet!!!

Rolf posted a very thorough update of our week earlier so I’ll keep my words at a minimum and share a few photos of our recent fun…

Special time with Oma & Opa and G'ma & G'pa

It was sad to say “goodbye” to Oma, Opa and Gpa this week but we have one more week of grandparent fun with Gma and then it will be “back to normal”. We’re looking forward to another great week of progress for Rudy…and summer fun for the older kids. Thanks for sharing in our joys as well as our sorrows. ‘Wishing you a wonderful weekend!

OK to Go!!!

Rudy had a stable night and is back on track with his feeds and meds this morning so we are good to go home. Rolf had the presence of mind to pack the car with 2 tanks of oxygen “just in case” so I have enough oxygen to get Rudy home…we’re just waiting right now for arrangements to be made to get the rest of the home set-up delivered to the house sometime today. Once that is confirmed, we can load up and hit the road before afternoon traffic!!! It has been great to connect with our buddies here at UCLA but Rudy and I are thrilled our stay has been a short stop in the CTICU/PICU!! We’re excited to head home and join in the “last day of school” fun with the big kids. Summer is upon us…YIPPY!!!!

There is Good News and Bad News

It’s well past 10pm and Rudy is finally resting back “home” in the CTICU after a very long day. Rudy’s adventure in the cath lab lasted about 4 hours this afternoon. He was fairly calm in the PACU right after his procedure but by the time he was transported to the ICU for overnight observation, he was worked up and irritated. It took some methadone to give him some relief but that’s understandable as his last feed was 4am, his last meds were at 6am and he had a very full experience in the cath lab. He did great and I’m so proud of him.

Rudy had a wonderful team with him today. Dr. Dan and fellow Dr. Leigh along with our SB Cardiologist Dr. Harake conducted the heart cath. They ended up gaining access through the groin and neck. Dr. Judith Brill knows Rudy well from her rounds as one of the PICU attendings but she is also a fabulous anesthesiologist and we were blessed to have her caring for Rudy today in that capacity. Because they went through the neck, Dr. Brill had to suture his trach in place as they needed to take his trach ties off and he came back with an IV in his forehead. So Rudy has a number of tender spots this evening that, I’m sure, are pretty sore. Dr. Brill was our full-service anesthesiologist today because in addition to her official duties, she removed a couple of chest stitches that were hanging around way too long AND she swapped out Rudy’s g-tube for a new and improved button mic-key with a less bulky, low-profile. Her willingness to do that for us saves us a trip to the hospital in SB as the swap was a bit too involved to do in our GIs office. Not to make it all about me BUT Dr. Brill sure helped make my life a little less complicated today and that’s really nice! Ha ha The plan is to watch Rudy closely tonight to make sure he rebounds from today safely and if all goes well, we should be allowed to go home late tomorrow afternoon.

There is much to process from today’s cath. In general, I think we have reason to be encouraged. As Rolf mentioned earlier, the team called for consent to do an angioplasty in the right pulmonary artery because they detected some narrowing of the artery. They also coiled the right collateral artery which, I think, means the artery was tied off reducing the overall blood flow to the lungs. This will prove helpful at the time of the Glenn but will make Rudy look a little more blue in the short term. Dr. Brian was consulted and given the information gathered in the cath lab and everyone is in agreement that as far as the heart goes, things are looking good. Rudy hasn’t quite grown out of his shunt yet which means we don’t have to rush towards the Glenn. In fact, if we can keep Rudy’s sats in the 70s, we could POSSIBLY wait until Rudy turns one before we do the Glenn!!!! Waiting 2-4 months for the next open heart surgery would allow us valuable time to get Rudy fattened up and stronger.

As has always been the case with Rudy, however, we are facing a challenge unrelated to his heart defect. Today’s findings also confirm that his lung function is still weakened and not what it should be. He just isn’t strong enough to expand his lungs fully. This is chronic for Rudy as he has battled this condition from birth but it doesn’t necessarily mean it will be a permanent problem. It will take time, though, maybe even up to a couple of years so we need to be prepared for Rudy to be oxygen-dependent even after his Glenn. For now, the team’s recommendation is to send Rudy home on a continuous oxygen supply. The extra support will allow him to focus his energy on growing as opposed to breathing and it will help him sat in the 70s – a more preferable range while we wait for the Glenn. Sending Rudy home on oxygen certainly isn’t what we hoped for out of this trip to UCLA but I’m all for giving Rudy what it takes to keep him comfortable and help him grow in preparation for his next surgery.

Rudy has proven himself strong and an overcomer on so many occasions. I trust he will catch up and develop GREAT lung function in time. Please join us in praying specifically for his lungs and muscle strength in his chest!!! Tomorrow will also probably involve some more training in how to care for Rudy on oxygen so please pray that we won’t be delayed in going home due to logistics. It looks like we’ll have to pack away our candles and stay clear of open flames in general for a season until Rudy gets past this bump! ‘Just another little adjustment in the larger scheme of things. As always, one day at a time…

Entitlement Issues!

I’m sitting here at UCLA grappling with entitlement issues…I never waited for Rudy during one of his procedures without the luxury of a private room in which to wait. Here it is 2 1/2 hours since they took Rudy to the cath lab and I’m sitting in the little lounge area on the 1st floor waiting with the other commoners. Ha Ha Just kidding, I’m happy not to have a permanent residence here again but it is weird to be back in such familiar territory. I haven’t heard anything from the team conducting the cath yet but since Rudy got such a late start today, I’m almost certain we’ll have to stay the night for observation. Rudy has a great team of folks with him today that know him well. Rudy waited patiently all morning and didn’t complain eventhough I know he was getting very hungry. He is such a sweet baby. I’ll post again when we hear something…thanks for praying!!!!

What A Difference A Few Months Can Make!

10-09-08 Three days after open heart surgery

05-30-09 Approaching open heart surgery #2

When you see Rudy from day to day, it’s sometimes hard to see the gradual changes and growth he is experiencing but Rolf and I were struck this morning by how far Rudy has come since his post-op days back in October!!!! Rudy has settled into a nice routine and been so content and cooperative since our return from hospitalization #2. The Glenn may be coming up quicker than we had hoped originally but we are encouraged by his ALMOST 2 pound weight gain and the “twinkle” (not quite a smile yet) that emerged this week to brighten up his whole face. Speaking of weight gain, Rudy may start packing on the pounds now that we have cleared the rice cereal hurdle. After several failed attempts at cereal feedings, Rolf (a.k.a. The Baby Whisperer) fed him an entire serving of cereal this morning and Rudy finished it in record time without gagging!!! Something “clicked” for him and when we sat down at noon with serving number 2, he started to smack his lips like a little baby bird eager for what was coming. Any progress we can make now and get firmly established is a blessing as I’m sure we’ll lose a bit of ground in the weeks following the Glenn. He may have to relearn some things but at least we can rest assured that he can do them!!!

Speaking of hurdles, Rudy had a first today that would make Gpa Dick happy…Rudy attended his first track meet! Special friends from L.A. were in town for a Regional Club Track Meet and we were thrilled to cheer our Emmie friend on as she ran the 4 x 100m relay. We missed seeing big brothers Jake and Levi but were blessed to catch up with Robin, Tommy, Emmie and Eileen and the goings on back in L.A. -refreshing fun!

June will be full of grandparent fun as Oma and Opa fly in today for a two week stay and Gma and Gpa will come for the last two weeks of June – overlapping so all grandparents will be here for Rudy’s dedication – so special!!! We have a big week ahead…Wilson’s promotion to Jr. High on Tuesday, Rudy’s angiogram (cath) at UCLA Wednesday and Thursday, last day of school on Friday. We’re anxious to get the information from the angiogram and a game plan for the Glenn but also sensitive to not let it overshadow the other big events of the week. Please pray specifically for Rudy’s health as the procedure will be postponed if he gets sick. As it turns out, our little half-heart is the healthiest in our household right now…the others are battling congestion, coughs and a low-grade fever – normally not very notable but this is a bad weekend to have a little bug hanging around.

Don’t forget to “save the date” on June 12th!!!!!

Blessed by your continued prayer support, 🙂

A Memorable Weekend of “Firsts”

Rudy holding paci

We’ve been off-line for a few days and are eager to get back on to tell you about a few “firsts” for Rudy. After careful consideration and preparation, Rolf and I decided to attempt a little family roadtrip to Pine Valley, CA (just outside San Diego). Our dear friends, Grace and Marlin (Rudy’s godparents), were marrying off their son Josh (of whom I have very vivid memories toddling around in diapers, I might add). We wanted to be there so bad as it would mean so much to us and the kids to join in celebrating Josh and Emily in person. We went back and forth on the decision but by Thursday morning Rudy was looking good and we figured if he didn’t tolerate the drive or he wasn’t looking comfortable, we’d just turn around and come home. San Diego has a good Children’s Hospital nearby so we knew we could get help if we needed it. As it turned out, Rudy did GREAT!!! Our six-hour trip landed us in Pine Valley around 1am Friday morning. Thanks to the generosity of some friends of Grace and Marlin, we borrowed a mobile home that was conveniently parked right next to their house so we settled in, went to bed and enjoyed falling asleep to the sounds of rural California. So, Thursday marked Rudy’s first “roadtrip” that didn’t involve UCLA as it’s destination. Friday marked Rudy’s first wedding. We were able to help with last minute preparations a little bit on Friday morning before the 2pm ceremony. It was fun to watch Grace and Marlin navigate seemingly effortlessly the many details of the day, to visit with their family from Canada who I haven’t seen in almost 20 years (!) and to introduce Rudy to many friends in our San Diego circle who have been praying for him so faithfully. As you can see from the picture below, Josh and Emily were glowing…a confident young couple we are proud to know and were thrilled to celebrate. Rolf and I found the escape from the daily routine and telephones very refreshing and it was good for the soul to be together as a family.

Josh and Emily

We enjoyed the VanNortwick’s hospitality one more day and packed up early Sunday morning to make our way home. Rolf was kind enough to record the Indianapolis 500 for me so we looked forward to tamales in front of the t.v. watching the race as soon as we got home. I found out last week that my friend and neighbor Jannele likes the Indy 500 maybe as much as I do so I avoided making any contact with her as we drove in so I wouldn’t find out any race results! We have a date to watch the race together next year. 🙂 So, Rudy’s big first yesterday was hearing Jim Nabors sing “Back Home Again In Indiana” and watching the start of “the greatest spectacle in racing”- nothing could be better. Rudy dozed off pretty quick as did Rolf and I at about lap #160 but Max dutifully woke us up with only 3 laps to go to see Helio cross the finish line for his third Indy win!!!! Rudy missed the big finish but I think he liked all the excitement nestled snuggly in his little port-a-crib set up in our living room. Good times…good times.

Uh-hmmmmm, no comment. — Perhaps there's some Canadian godparent greeting we weren't advised of