We said goodbye to the last of Rolf’s family on Sunday after a full and much-too-fast family gathering.  After months of preparation and anticipation for the reunion, it’s over so quickly and, just as quickly, we’re on to the next thing!!!  This week is a big week for our family as we’re all participating in our church’s Vacation Bible School.  Olivia is an attendee, Max is helping in the nightly skits, Wilson and I are on the music team & Rolf and Rudy are parking attendants!  As you can imagine, a room full of excited children is not Rudy’s favorite place to be so a parking lot full of incoming and outgoing cars seems a better option for him.  Ha  It’s fun to do something together nonetheless.  This week is also significant because it was this week last year that my dad took his severe turn for the worse in his battle against brain cancer and as we sent the kids off to VBS each evening, Rolf and I scrambled to make the necessary arrangements to get me to Kansas as quickly as possible.  The 17th will mark the year anniversary of his death…’hard to believe it has been a year…’still think of him daily.

To add to the post-reunion flurry of activity,  Rudy had an appt at UCLA yesterday that got me, Max, Olivia and Rudy up and on the road by 6am to make the morning appointment with Dr. Pornchai (Pulmonologist).  It was our routine-3 month appt but the first since Rudy’s failed sleep study in May so I was eager to talk to Dr. P about that.  In terms of a medical update, nothing for Rudy has changed in regard to his lungs.  Dr. P is recommending another sleep study in 6 months.   I’m seriously doubting the likelihood of a successful sleep study for our toddler as he clearly hates the sleep lab environment and I’m wondering if there is ever a “home sleep study” option offered out there.  Something else to look into I guess…  🙂

The big news coming out of this appointment is that Dr. Pornchai is making a big move to Children’s Hospital Orange County (CHOC)!  We’re losing an important member of Rudy’s team -so sad 😦 – but we appreciate Dr. Pornchai (affectionately nicknamed “Dr. Porkchop” by Max and Olivia) and we wish him well at CHOC.  The upside to the transition is that it seems like a good time to seek a second opinion.  Rolf and I have been considering talking to folks at Children’sLA or Stanford as we’ve heard great things about both pediatric pulmonary departments so Dr. Abbott’s office is working on getting the necessary referral authorization.  Between a second opinion consult and our first consultation with Rudy’s new pulmonologist at UCLA in 3 months, we welcome a fresh look at and input on Rudy’s lungs.

Rudy has taken, lately, to making a bee-line for Olivia’s room whenever he is free to roll around and explore….there sure are ALOT of interesting trinkets to explore in Olivia’s room!  To keep him close but contained, Olivia came up with a handy solution…

But he didn’t seem to mind…he was all “smiles in the box”!

Thank you, all, for your continued prayers…we sure pray for lung health specifically as we continue to wait and hope for the opportunity to advance in Rudy’s heart treatment.

‘Just a quick post to let you know that Rudy is finally on the mend.  The flu bug he had was a vicious one but he has been d-free for two days and smiley again so we’re confident he’s feeling better…just in time, too, as Oma and Opa arrived yesterday for a 2-week visit and in just 2 short days, ALL the Geylings/Connellys will make their way to our little slice of the West Coast for a long due family reunion!   Watch out Santa Barbara – The Geylings are coming!   It will be a special time to celebrate Franz and Helga’s 50th & family…there is a handful of Rolf’s family that hasn’t had the opportunity to meet Rudy yet so this time together will be significant for Rudy as well.   The final preparations are underway…

Rudy had his routine cardiology appointment with Dr. Harake this week…it was our first appt. with him since Rudy’s seizures and failed sleep study in May so we spent a good bit of time just catching up.  The echo showed no change in his heart condition (no further compromise) which is good.  Dr. Harake mentioned at our last appt that he might consider another heart cath (which would let us know what is going on specifically with his pulmonary pressures) in October but he feels, now, that maybe we’ll give him some more time and wait until the first of the year….that is if his heart function remains the same.  It’s hard to wait for the information a heart cath would provide but we’re thankful Rudy seems content and happy while we continue to wait.  After the hiccups of the past couple of months, we hope to settle into a calm where Rudy is concerned, enjoy the rest of the summer and not let our minds swirl about what might or might not happen in the fall.  Thank you for waiting this out with us…:) 

The bug Rudy came down with over the weekend spread to me and Olivia (and, unfortunately, to two out of three house guests we had over the weekend!!!!  Yikes, sorry gals!).  I was miserably sick on Monday but thankfully it hit hard but ran it’s course quickly…I was moving slow but back on my feet on Tuesday.  Olivia was down for a couple of days but is back to normal now.  Rolf and the big boys have dodged it (knock on wood) but poor Rudy is still battling diarrhea.  I thought he was on the mend with an upgrade to “loose” stools yesterday but he’s back to the big D today so we’re praying this bug flys away soon.  Today is day 6 so we’re still on alert but we’ve managed to keep him hydrated and I think we’re within safe territory.  He’s getting his energy back and even attempted to join in the cul-de-sac fun yesterday on his little riding truck…

You may recall that Rudy’s endocrinologist took Rudy off his daily dose of Levothyroxine last month feeling as if Rudy might be ready to stop his thyroid treatment.  He dc’d the med temporarily with the order to add to his monthly blood draw to test his thyroid hormone levels.  Unfortunately, Dr. Lifshitz’s office called yesterday to let us know that his TSH is out of range and, therefore, we need to put him back on Levothyroxine.  -bummer-  Not a huge deal in the larger scheme of things but I was hoping for even a small victory…an indication of growth and progress somewhere within all his complex and compromised systems.  Ok, I get it, we’re still in limbo…and so we wait.

Unfortunately another virus is working it’s way through Rudy…he came down with a bad case of diarrhea and vomitting yesterday so we’re keeping a close eye on him and making sure he doesn’t get dehydrated.  As a result, our Father’s Day celebration is a quiet one here at home but hopefully we’ll be able to head out for a special dinner a little later.  How grateful we all are for Rolf…a loving Dad, good husband and faithful man of God.  It’s hard to be distracted by concerns for Rudy on a special day like today but it’s days like these that I’m most thankful for Rolf…for his partnership, for sharing the responsibilities of life with me and for his hands-on expressions of love toward all our kids.  So, today is filled with prayers of thanksgiving for who Rolf is to us and prayers for a speedy recovery for Rudy. 

Happy Father’s Day to all the special fathers we’re blessed to know!  🙂  Thank you for your continued prayers…