This weekend included a lot football (as they often seem to this time of year). It started with cheering for Wilson as the band played for the Homecoming game at Dos Pueblos. We kept it up with Max’s YFL game on Saturday afternoon. Even all that time in the sun didn’t squelch a pickup game from breaking out on the grass after a late lunch at Carl’s Jr. Rudy got so excited watching that he HAD to join in.
Get that kid a helmet and pads. He’d make a tough linebacker!
Rolf, Rudy and I started our day at 4:30am and were on the road by 5:30am to make our 8am appointment with pulmonology at UCLA. We were excited to finally meet Dr. Woo who recently joined the UCLA roster of pediatric pulmonologists. You may recall that we sought her out as a second opinion through our insurance a few months ago only to discover shortly after that she was going to be Dr. Pornchai’s replacement at UCLA!!! One of the reasons we wanted to talk with her specifically is because of her specialty in pulmonary hypertension and lung/heart issues.
We like her very much. She’s personable and easy to talk to. She was smitten with Rudy from the start and familiar with his case as she had talked with Dr. Dan before our appointment. In a nutshell, she feels our current drug therapy for Rudy’s pulmonary hypertension is the right approach. She is not too keen on the idea of weaning Rudy from the trach without him passing a sleep study but also recognizes the fact that it will be hard for Rudy to pass in the sleep lab environment so she is putting an order in for a home study. It will require him being observed and monitored 2 or 3 nights in a row but I think he’ll have a better chance of passing it at home. So, we’ll see her again in three months and in the meantime, we’ll work on getting the sleep study arranged.
After the heart cath, Dr. Nina (ENT) asked us to start capping Rudy’s trach again to get him used to breathing through his mouth and nose in preparation for decannulation. Because of Rudy’s cold, we weren’t able to cap him until this weekend. We had him capped all day yesterday and today and although he doesn’t like it at first, he does adjust quickly and seems to be doing okay with it. He is maintaining O2 sats in the high 70s/ low 80s…so we’ll continue to cap his trach during waking hours and hopefully this will be good practice for the sleep study too. Capping his trach, however, means he has to get his supplemental oxygen through a nose cannula and he fights us when we put it on. Olivia said the nose cannula makes her sad because it reminds her that Rudy has HLHS (me too Livy) so it’s an adjustment for more than just Rudy. Thankfully, he doesn’t mess with it much once it’s on so we’ll see how it goes. Rolf did a good job distracting him with a game of ball last night…
So, we have a couple of things to work on between now and the end of the year. In addition to all this, Rudy has his first day of school tomorrow! Considering the long day we had today, I guess we better sign off for now and get a head start on a good night’s sleep tonight. Sleep tight everyone…we’ll post more tomorrow.
It’s Friday night and we’re all getting ready to hit the hay a little early but many have asked if Rudy got to go to school on Thursday so I wanted to post a quick update. Although Rudy sounds and looks much better today, he was still quite junky yesterday and so we had to keep him home from school again. He took advantage of another day off and had a nice, long nap. I imagine we’ll have a green light to go on Tuesday so stay tuned… 🙂
Rudy went with me to church this morning to help me prep for Sunday’s worship…Wilson better watch out, it looks like Rudy may want his gig:
We hope to be up and out of here early tomorrow morning to set up our “Team Rudy” tent along the Heart Walk route. We’re all looking forward to a special day tomorrow. We’ll be sure to post a fun recap of the Heart Walk asap. Happy walking friends!
Rudy continues to do double duty in therapy as he adjusts to his new therapy schedule three times a week at the CCS Clinic and finishes up his home-based therapy that he has received through the Regional Center twice a week since we brought him home from the hospital. We have so appreciated therapists Kris, Gwen and Jodee these past two+ years and will miss their presence in our home very much. We’re going to make the most of the last two weeks we have with them as Rudy will no longer be in their “official” care as of October 1st but they will always be a part of “Team Rudy”. 🙂 I think Rudy senses his time with the gals is winding down and decided he’d give them a little parting gift…an emerging skill that has been one of our therapy goals for a long time…
We’re still waiting for word from Dr. Harake’s office about Rudy’s heart cath date. It could be as early as next week so we’re eager to get confirmation on this and plan for the big kids accordingly. We’ll keep you posted as this will be another big trip down to UCLA for us.
I took Rudy to the Sears Portrait Studio recently for his annual portrait…I was studying the digital prints yesterday in preparation to place an order when I took a closer look at the image below…I happened to bring one of Rudy’s favorite books to the photo shoot and the photographer captured this pic of him as he flipped through the cardboard pages. He lingered on this page caught in the photo for a long time and when I zoomed in on the image, I was touched to read the title of the page “I am with you always” and to see the image of Jesus holding a little dark-haired boy! So sweet and such an encouraging image to hold on to. I have a strong feeling Rudy doesn’t need to read about that bible truth to know it’s validity…he knows that truth through experience for sure but what an amazing visual reminder of the spiritual truth for me today…may it be a sweet reminder for you too!
Our big girl turns 9 years old tomorrow…a special birthday as Olivia will be 9 on 9-09. 🙂 We enjoyed a celebration with a few friends at Chuck E. Cheese’s on Sunday…a special treat for a special birthday. Rudy and the big boys joined in the celebration too. We were, of course, concerned that Rudy would not tolerate the noise and crowds at Chuck E. Cheese’s on a Sunday afternoon but we really wanted him to be a part of celebrating Olivia so we decided to give it a try. Rudy was definitely cautious most of the time and not too sure about Chuck E. Cheese when he met him up close and personal but he held it together (except for one meltdown during the high-octane stage show) and his presence helped to make Olivia’s celebration so special.
Rudy even braved a couple of rides…I brought a tub of Clorox disinfectant wipes and got a handful of cross-eyed stares from onlookers as I tried to nonchalantly wipe down every inch of surface within Rudy’s reach. My efforts may be proving futile as Rudy came down with a cough, sneezes and a runny nose yesterday. Oh well, I think Rudy would agree it’s a small price to pay for the fun of new experiences like this ride with Wilson…
Rudy fell fast asleep on the ride home in my quiet car while the big boys listened to their ipods…Rolf, on the other hand, drove Olivia and her party guests home. Wow, and we thought Chuck E Cheese’s was loud! Oh, did I mention the closest CEC is about an hour from our house? Yep, that’s right, 60 minutes of this…ha, ha, ha
Olivia asked to celebrate her bday at Chuck E. Cheese’s many times over the years and when I asked her if the experience lived up to her expectations, she replied “It was better!”. Yea! You sure are fun to celebrate Olivia and you sure are a special part of our family. Happy Birthday Precious Girl!!!
Homework started this week for the big sibs and Rudy started his PT and OT therapy at the CCS (California Children’s Services) Clinic yesterday so our official fall schedule is underway. There will be some additional tweaking in Rudy’s schedule in October when he turns three, graduates from the Regional Center’s Early Start Program, possibly starts preschool and we finalize his CCS therapy sessions but, for now, Rudy’s schedule is plenty full and all 4 kids are diligent workers in school, therapy and all their various fall activities.
The kids wrote a song for Rudy during our getaway to Morro Bay and it has fast become a family favorite…songwriting tip #1: when in doubt, use the word “awesome”! 🙂
Bless his heart, Rudy barely napped all summer and I thought it was because he was outgrowing the need for a daily nap (all my kids stopped napping at 2 yrs!) but as it turns out, he just didn’t want to miss out on any of the sibling fun because once the big sibs went back to school, Rudy hasn’t missed a day! Ha Ha
Heart Walk Update:
A BIG thank you to those who contributed to the Heart Walk so far. We’re almost at 50% with a month to go-Amazing! The kids planned a while ago to have a rummage sale to raise money for the Heart Walk and we’ve decided to have it on Saturday September 17th. Local friends, if you feel the desire to clean out a closet or two, we will gladly accept any donations for the sale between now and the 16th! 🙂 Thanks everybody!
Blessings to you dear friends…
Greg Lawler strikes again! While the rest of us watch TV he spends his more conventional evenings with his photography but sometimes he likes to spice things up a bit with some beekeeping, chicken-farming or metal-smithing. His latest pursuit was to try and take high-altitude pictures of the earth. Apparently no ladders of sufficient height could be found so he sent a balloon to 95,000ft (“near space”–3x higher than planes fly!) and took all kinds of pictures and video.
In addition to the images, Greg and his partner Geoffrey conducted a ground-breaking experiment on what happens to a marshmallow and a Twinkie at high altitude. They thought it would be fun to take Rudy along for the ride, so we now have three very special Rudy bracelets that have been to space. You can watch a really beautiful video if you click here or follow the below. Who knew watching some silicone bracelets sitting between a marshmallow and a Twinkie could get one misty-eyed?
Fly, Rudy, Fly!
http://www.happycapsule.com/blog/geoff-eats-the-twinkie-from-space/
Reality is setting in as we start a full week of marching band camp for Wilson, daily football practices for Max, final school preparations and FIVE doctor appointments for Rudy…all a bit tough to engage in after the fun of the last two weeks – our grand summer finale! We enjoyed the luxury of hanging out with my brother and his family from Kansas for 4 whole days during Fiesta here in Santa Barbara and then we headed up the coast a couple of hours for a 4-day family getaway in Morro Bay. Rudy, in particular, has enjoyed all the special attention he has gotten this summer from visiting friends, family and his big sibs and it will be a rude awakening when the kids head back to school next week and the house is empty again. 🙂
There wasn’t a whole lot of sun to soak up in Morro Bay but we sure soaked up the fun!…
Olivia was a quick study and drove like a pro alongside her brothers…
We’ve also enjoyed a whole month free of any doctor appts but we’re making up for it this week as Rudy has an appointment with all his specialists except pulmonology!! As a result, we’ll have a thorough medical update later in the week. Funny little side note regarding pulmonology…we got insurance approval last week for Rudy’s second opinion with a well-regarded specialist at Children’s LA and just two days later we got official notification in the mail that she is actually joining the pulmonology department at UCLA in the wake of Dr. Pornchai’s departure!!! That’s how Rudy rolls–his referrals come to him! We’re excited to know she’ll be a part of Rudy’s team at UCLA and will also know if there would be any benefit to looking at another major facility here in LA. We’d like to get an appt in the books soon. Praying for discernment…we’ll keep you posted. In the meantime, we will make the most of the last few days of summer and anticipate a fall full of continued adventure.
After several weeks of June Gloom at the start of our summer, we’ve finally had some nice sunny weather here on the coast and we’ve taken full advantage of time in the pool. Even Rudy has discovered a love for the water. Although we have to be very careful that his trach doesn’t get wet, time in the water is so good for him. He even spent one of his therapy sessions in the pool with therapist Kristin and is more and more confident with each spin in his inflatables! 🙂
Max produced a little video with some recent pool footage we collected…be patient, it takes a while to buffer but it’s worth the time investment! Ha (Thanks Max):
Boy, when he finally gets to wean from the trach, he’ll be quite a little water-rat like his big sibs! He’s definitely primed and ready to go…’wish you could come over and join us for a dip ~ especially our friends and family burning up in the Midwest and East! 🙂 Bless you friends….
I don’t know if it’s our typical dreary June weather or the disappointment over Rudy’s failed sleep study but the past couple of weeks have been pretty gloomy for me. I fear we sound like a broken record but the reality is there is a daily battle to not give in to our fear and anxiety over Rudy. Even with all the sweet and positive moments, there is a constant and nagging ache that reminds us that Rudy’s journey hurts.
Thankfully there is always enough going on around here to distract us…
We took a day trip up the mountain to Lake Casitas late last week to enjoy the waterpark there with our Girl Scout troop of 20 girls!!! With parents and siblings joining us our total count was 50 – it was quite a caravan!!! Although the June gloom overcast didn’t burn off and the water was freezing, the kids had lots of fun and Rudy was comfortable with the absence of the heat…
The kids spent some time cleaning out their rooms this week and, as always, unearthed fun old treasures to play with…Wilson introduced Rudy to “Heroscape” and when Rudy began to dismantle his battlefield, we diverted his attention with “Rescue Heroes”! It’s fun to watch Rudy begin to interact with toys…
It has been a long time coming but Rudy is beginning to micmic words much quicker these days…he’s figuring out a greater variety of sounds and beginning to assign meaning to his words. I caught his latest word on video today…Happy Rudy!
Did you notice how his face lit up when he said “Daddy”? 🙂 – priceless. That reminds me…Wilson entered a preaching contest at a teen conference he went to with the church youth group a few weeks ago. The theme of the entries was to be “grace” and Wilson prepared a 5 minute sermonette on “Finding God’s grace in difficult circumstances”. Essentially, he shared that the key to finding God’s grace in difficult circumstances is perspective and he used Rudy to illustrate. He said that he could get real bummed that his baby brother has half-a-heart but instead he finds great pleasure and encouragement in Rudy’s enthusiastic greeting everytime he comes home from school…something he really looks forward to every day and how that’s evidence of God’s grace. I agree with Wilson’s reflection…there’s nothing like a happy greeting from Rudy to help keep things in perspective!! Happy June Everybody…God’s grace to you,
Rudy's Beat 