It’s late and the house is quiet…all survived the first day of school and slowly but surely we are falling into a familiar routine again.  As predicted, Rudy was pretty lonely after the big sibs left for school but he did take a long afternoon nap and was quite animated this evening with everyone home again.  So sweet!!

Check out the proud pupils…

 9th grader Wilson!

7th grader Max!

4th grader Olivia!

 We’re off to a good start and trust this school year will be full of fun new experiences.  Rudy’s new therapy schedule at the CCS (California Children’s Services) clinic starts next week so our new fall schedule continues to take shape.  We’ll let you know how it goes.  🙂

Neurologist (check), Ophthalmologist (check), Gastroenterologist (check), Cardiologist (check), Endocrinologist (check)…the only one we’re missing is the Pulmonologist and we’re still working on getting that appointment with the new pulmonologist at UCLA so our checklist is nearly complete.  Ha Ha

Our week of appointments for Rudy is over and most everything is checking out okay – no major changes but there is some new information. 

Rudy’s seizures have stabilized and so Dr. Corazza (neurologist) would like to keep Rudy on the same dose of Keppra until we see him again in December. 

I was eager to talk to Dr. Silverberg (ophthalmologist) as we hadn’t seen him in a year and I wanted to update him on the information we got in May about the brain insults to Rudy’s occipital lobe from his stroke activity since this is the part of the brain associated with vision.  He’s so good with Rudy and so skilled in his exam.  Unfortunately there isn’t much we can do at this point to determine if any of Rudy’s fields of vision have been affected by the brain damage…we just need to wait until he gets older.  The good news coming out of ophthalmology is that Rudy doesn’t need glasses at this time after all.  Dr. S felt his astigmatism was significant enough last year to warrant glasses but wanted to wait to prescribe them and now he feels the astigmatism is lessening which means no glasses – yippy!  🙂

It’s always good to check in with Dr. Kelts (gastroenterologist) as he is my “big picture” guy.  Although he helps us manage Rudy’s g-tube and feeds specifically, he also keeps an eye on Rudy’s overall condition and addresses specifics as needed – so helpful.   For example, we’ve been concerned that Rudy’s chest incision has never fully healed…there is a pesky little suture that never dissolved or receded as it should have and I was advised to trim it the next time it surfaced but because of the perpetual oozing wound and scab it produces, I could never get to it to trim it.  It’s kind of a minor issue and somewhat unrelated for the majority of Rudy’s specialists to address but Dr. Kelts noted it immediately and when he asked me about it, I asked him if we should try to find a wound care specialist as we were having a tough time resolving it ourselves to which he responded “I’m it”…he quickly prescribed a topical medication and said if we can’t get to the suture after it heals, then we’ll take care of it surgically once and for all.  THANK YOU!!!  It sounds simple and stupid but there are certain things in Rudy’s condition that don’t fall under any specific doctor’s umbrella and because we have, essentially, two teams of doctors in LA and SB, there are times when a doctor is reluctant to act as not to step on another doctor’s toes or interfere with another doctor’s treatment.  It is an interesting little dynamic we deal with at times which is why I appreciate it so much when a doctor like Dr. Kelts comes in, takes the bull by the horn and attempts to make things happen for Rudy that are long overdue.  🙂

The other symptom Dr. Kelts noted was how dusky Rudy looked which brings us to cardiology…It has been a subtle change but I’ve noticed in recent weeks that Rudy is a bit bluer than usual although his O2 sats aren’t dramatically different.  Dr. Harake took his time and did a thorough echo.  He didn’t see a huge change but he would like to see Rudy again in a month and he would like to get a heart cath scheduled for this fall.  Eventually, Rudy will outgrow the shunt that was placed in his heart during the Norwood procedure when he was 5 days old.  It will be a gradual process and could be happening now which would explain him getting duskier.  Right now Rudy’s O2 sats register between the mid-70s to low-80s.  The need to act will come when his sats drop down to the low-70s to high-60s.  When that time comes, there could be the option to put in a larger shunt.  We always assumed that putting in a larger shunt would buy us more time allowing Rudy’s lungs to mature and get him “Glenn-ready”.  However, in talking with Dr. Harake yesterday, he explained in more detail that choosing to replace the shunt would actually put the Glenn further out of reach as a larger shunt would increase Rudy’s pulmonary pressure which is why he’s not a candidate for the Glenn now.  Wait…What?  This is a new and very significant piece of information that changes the mental game for me and Rolf…we need to take the time to research this and understand it better but it is a bit sobering.  We always thought the decision to get Rudy a larger shunt would be a way TO the Glenn not instead of it.  The reality is we’ve never really had “choices” where Rudy is concerned…all throughout this journey we’ve only had one treatment option when the need to act came along and so there is no point in obsessing over the “what ifs” to come but it was nice to feel like we had a “safety net” of sorts…to feel like we could buy some time with a shunt replacement.  As Dr. Harake reiterated yesterday, we will make the best choice for Rudy with the treatment options that are available to us at the time we need to act and that needs to be our focus but it sure is hard not to get consumed by the frightening unknowns hidden in that simple objective!  Although not panicked, our minds are swirling again and my heart is burdened – at a time when I want to emotionally circle the wagons and protect Rudy and our family, it’s actually time to start another school year and physically scatter everyone all about…to different schools and all kinds of activities. 

Today is one of those days when I don’t want to be a grown up!   🙂

The first available heart cath is October 6^th which is only two days before the Heart Walk so we’re hoping for an alternative date…we’ll keep you posted. 

We’re bracing ourselves for a full fall…thank you for supporting us in prayer!  How indescribably grateful we are!!!  🙂

You may recall that in celebration of Rudy’s birthday last October, our family and some friends participated in the American Heart Association’s Santa Barbara Heart Walk to raise funds for pediatric research and programs.  At the time of the walk, we were anticipating and very excited about a trip to UCLA for Rudy’s next heart cath and, we hoped, the green light to move forward with Rudy’s next heart surgery.  As most of you know, the news from Rudy’s heart cath on October 21^st was not what we had hoped.  Not only was Rudy not ready for his heart surgery but he was officially declared not a candidate for surgery or a heart transplant at all because of high pulmonary pressures and poor lung function in general.  Shocked and in disbelief we sat with two of Rudy’s cardiologists after the cath to try to understand what options Rudy had.  In short, they described that Rudy had exhausted his current medical options but that we shouldn’t lose hope because “there may likely be treatment options available to Rudy in 6 months that aren’t available today”.

At the time, this felt very daunting and the wind was certainly taken out of our sails but in the 10 months since, we have been encouraged by Rudy’s growth, developmental progress and obvious love for life.  As a result, we are hopeful that God is, indeed, allowing Rudy time – valuable time that could very well provide new treatment options for him.    We are motivated more than ever to help in the effort to raise research funds.  Last year, our team (Dr. Harake’s Moms with Heart) raised over $10,000 for pediatric research through the Heart Walk campaign ~ an amazing success!  We certainly surpassed all our fundraising expectations going into it and, more importantly, it was a meaningful experience for our family and such a special birthday celebration for Rudy.

For all of these reasons, our family is excited to participate, once again, in this very personal campaign to celebrate Rudy turning 3 years old in just two months!!  By participating in this year’s Heart Walk on Saturday, October 8^th, we hope to recruit a team and raise another $10,000 in research funds vital to a potentially healthy and active future for Rudy and kids like him.  Will you consider joining us by donating today or joining “Team Rudy” in Rudy’s honor?

To visit our family’s personal donation page, follow these simple steps:

1.  Go to “www.sbheartwalk.com”
2. Click “Donate” on the Home Page
3. Enter my name:  First Name “Trish”, Last name “Geyling” and click “Search”
4. Follow the instruction to click on our family’s name and you’re there!!

Here’s some more specific information:

The 20^th Annual Santa Barbara Heart Walk

Saturday, October 8, 2011

Fess Parker’s Doubletree Resort:  Registration at 9:00am – 5k Walk at 10:00am

Let’s Party!!!

For those of you who are close enough to walk the walk in person, we will gather the morning of the event, distribute “Rudy blue” Happy Birthday balloons to all the “party walkers” and celebrate with cake and party favors at the finish line!!  What a great way to spend a gorgeous October morning in Santa Barbara!  We hope you can join the fun.  Let us know you’re coming and we’ll reserve a balloon for you! 🙂 (rsvp to trish@silverbytrish.com)

2010 Fundraising results!!! 

Look close…Rudy’s family and friends were #1 and Logan’s family and friends were #2 ~ We were neighbors in the CTICU at UCLA and forever partners in our SB Heart Walk efforts!  Santa Barbara Heart Families ROCK!

Join our WINNING Team!!!

Wow!  My Cinderella-esque weekend is over and now I’m challenged to put into words what the whole experience means to me.  I’m not sure where to begin…  

I guess I should start by telling you that, yes, I am an Up With People alum! (Check out UWP in action…click here)  A little known fact about me for many of you…I guess I don’t talk about it much…and it’s not because I lack an appreciation for the experience.  On the contrary, I’m a very proud cast member of UWP Cast C 1986-87!!!! (proof in pics above) It’s just the opportunity to talk about one’s tour with Up With People back in the mid-80s rarely comes up in conversation!  ha  And maybe I’m a little gun-shy given the last time the subject came up in conversation with my friend Bob (yes, “Pastor Bob” who sometimes comments on Rudy’s Beat)…back when Bob, Rolf and I worked together in L.A. an old friend of mine met with Bob about a potential work opportunity.  When I arrived at Bob’s office to pick up my friend, Bob said with great enthusiasm “Trish! Kim told me you were with Up With People.  You were with Up With People? I didn’t know you traveled with Up With People?!!!”.  I humbly shrugged my shoulders and began bobbing my head back and forth preparing myself for the onslaught of gushing admiration I usually encountered when people associated me with this amazing organization when Bob continued….”I HATED Up With People!!!  No one can be that happy!”.  I responded with a shriek of disbelief and a big, ol’ slug in his arm.  Way to go, PASTOR Bob!  You traumatized this happy UWP heart for over a decade!  🙂  

Well, the positive, giving spirit for which Up With People is known was certainly on display this weekend in Tucson and as the back story of how this trip came to be for me and Rolf continues to unfold,  it’s clear it was in play in the months leading up to the reunion as well!  My cast has had a reunion every five years since we traveled..this year’s reunion hosted by the UWP Alumni Association included the casts from ’71,’76,’81,’86,’91,’96 and 2006…and although I’ve always wanted to attend, I never felt we were in a position for me to make that trip back to Tucson.  When talk of our 25th reunion started to circulate on FB a year ago, once again, I regretted having to miss the event…feeling it was even more out of my reach with the “Rudy logistics” in play.  

Unbeknownst to me, a fellow cast member spearheaded a committee of cast mates  (thank you Jim and all!) and submitted my name for an Everyday Hero award nomination having followed our journey with Rudy from afar the past couple of years.  (Jim also nominated our cast rep, John, for the “Outstanding Cast Representative” award and John also won!!!  MUCH deserved John…congrats!).  When I communicated my regrets about not coming, Jim quickly contacted Rolf and told him he had to get me to Tucson…and so the web of lies and deception started spinning and Rolf was a very busy boy coordinating Rudy’s nurse coverage, care and activities for the big kids and undoing any plans I had for the weekend without me finding out about anything!  His efforts to keep it a secret were quite elaborate…he and his posse of deceivers went as far as to send me texts and emails to confirm plans that he already secretly canceled, Rudy’s nursing agency sent me a decoy nursing schedule at the beginning of the month as Rolf had rearranged our hours for extra coverage for the surprise weekend, etc, etc, etc.  It seems everyone around me knew what was going on and NO ONE slipped and let the cat out of the bag…amazing!  

All the hard work of  Jim, Rolf and Cast C at large paid off because I was completely clueless when it finally came down to prepare to leave on Friday.  I was instructed by a mysterious and somewhat vague letter to pack and wait for further instructions.  Claiming he didn’t know what was going on, Rolf headed off for work Friday morning and told me to have fun with whatever was going on.  With the help of some very sneaky friends, I arrived at the SB airport to find Rolf with his overnight bag waiting to whisk me away to Arizona!  Wow!!  

Needless to say, my mind was swirling with questions…who? what? where? why? HOW?  And when it finally sunk in that we were heading to Tucson, my heart was all a flutter with apprehension…”It’s been 25 years!  What if my cast mates don’t remember me?  What will we have to talk about?”  Little did I know what was ahead.  

Well, my fears were quickly relieved when Rolf and I got off the plane and were greeted by one of my cast staff members, Denis, and I recognized him immediately.  Denis drove us to the resort where we were greeted by 15+ cast friends in the lobby!  There were lots of hugs and I could barely catch my breath…instant reconnections!!  What a rush…  The reconnections continued all afternoon poolside (passing much too quickly) until it was time to get ready for that evening’s banquet and program.  

Of course, my cast knew about the award and Rolf even admitted to being pretty nervous before the program started but either I was so caught up in the frenzy of just being there or my castmates are all pretty cool cats because I had NO IDEA something was up.  I was completely blindsided when my name was called and I was invited to the stage.  With tears streaming down my face, I looked out at the hall of 700+ guests barely able to concentrate on what was being said.  The presenter read a shortened version of the nomination letter below…posted for our records:  

“It is strange to nominate someone for an award that celebrates them for being the person they are, but no better words describe Patricia (Trish) Wilson Geyling (86C) than “Everyday Hero!” A dedicated wife and mother, Trish’s life was forced upside down by a turn of events in 2008 which changed her world and have helped her to become an amazing inspiration.  

Trish and her husband Rolf were surprised to discover in the spring of 2008 that they were pregnant with a fourth child, a boy. But the real shock came when the 27th-week ultrasound showed that their baby was diagnosed with Hypoplastic Left Heart Syndrome (HLHS). In plain English, HLHS means that the left side of the heart is underdeveloped and non-functioning. It would take a series of three risky surgeries between birth and about 4 years of age to get the little half-heart configured to give their son a chance of survival.  

 Rudy was born at UCLA Mattel Children’s Hospital on October 1, 2008 and had his first surgery, the Norwood, when he was five days old. While optimal timelines project about a month of hospitalized recovery, Rudy battled numerous setbacks that kept him in the ICU. His battles with chylothorax (lymphatic fluid in the chest cavity), trying to breathe on his own, and process food properly saw him return to the operating room four additional times (thoracic duct ligation, pleurodesis, tracheostomy placement, Nissen fundoplication/G-tube placement). They were finally able to bring Rudy home on May 7, 2009. The doctors would have counted it a victory to have him home for six weeks; there is great amazement that he has been home for more than two years.  

 Trish’s courage and strength over the last years are enough to make her a hero, but she and her family have taken their pain and struggle and transformed them in ways to help so many others. In the years since Rudy’s birth, their blog Rudy’s Beat (https://rudysbeat.wordpress.com) has been a source of connection for friends and family, as well as a resource for other families dealing with children born with challenges. Together with members of their community, the entire family has participated in the American Heart Association’s Heart Walk, as “Team Rudy,” to raise money for heart research. Trish, an accomplished jewelry maker, designed and produces a special heart pendant (http://www.silverbytrish.com/html/pendrh.html) with proceeds supporting Camp del Corazon, a wonderful organization that provides rich camp experiences for children living with heart disease. Trish has also spearheaded the production of “Rudy Rolls” forNICU/PICU wards, offering colorful and practical tools for propping up ventilator tubes and IV lines, for physical therapy exercises, positioning trach babies for trach changes, or simply grabbing hold and snuggling.  

 Rolf continues his work as President of the Santa Barbara Rescue Mission (http://sbrm.org) dedicated to bringing physical, emotional, educational and spiritual resources to men, women and children in need, particularly those struggling with addictions. The entire Geyling family is involved in activities supporting this program as well as their spiritual home, Coast Community Church. As time allows, Trish, a talented singer and guitarist, still performs for fundraisers.  

 A true testament to Trish’s heroism has been the dynamic affect Trish and Rolf have had on their three older children Wilson, Max, and Olivia. Each has grown into a compassionate caregiver. At a recent school assembly that Trish and Rudy were attending (since sister Olivia was getting an award), Student Council President Max noticed that the normal applause and celebratory cheers were affecting hyper-sensitive Rudy. He can get himself so worked up that he goes into respiratory distress. Sure enough…as the first awards were handed out and the applause began, Rudy’s face turned red, the tears started to flow and his deep, panicked cries rang out loud and clear. Before Trish could gather their things to make an escape out the back door, Max approached the school administrator and asked if he could address the crowd. She quickly stood to the side and gave Max access to the mic. He then told the room full of students and faculty that his baby brother was in the audience, he pointed Rudy out, proceeded to explain that Rudy doesn’t tolerate applause and asked if everyone would use the ASL sign for “applause” instead which consists of holding your hands in the air and twisting them back and forth a couple of times. Max’s quick thinking and confidence to follow through with his instinct is just one example how Rudy’s siblings have become heroes, themselves!  

 In a recent blog post, Trish writes, “Not much has turned out like we thought it would, which carries its share of heartbreak. But there’s also much cause for rejoicing. The delicate little kid with the stringy curls and battle scars who fought his way home is a far cry from the happy, robust and squirmy boy we have today. His bewildered stare has turned into a smile for everyone he meets–there are times where he just seems to exude love and joy from every pore. It’s been a journey of concern and anguish, but also richness and beauty like we never imagined; and we’ve drank deeply from that these last two years.”  

 Trish could have sunk into despair with Rudy’s arrival, and spent her energies on self pity.  Instead, she mustered the courage of an Everyday Hero, and served as an inspiration and genuine help to parents of other children with special needs. We are lucky to call Trish a castmate and friend, and to nominate her for this award which she so richly deserves.  

Sincerely,  

Members of UWP Cast C 1986:  

David Aurilio (California), Nicole Coppens (Belgium), John Fedynich (New Jersey), Forrest Nelson (Japan), Kendra Reid (California), Kristin Sellers Schneider (Ohio), Charlene Noel Soucy (Rhode Island), Lee Swider Wiensch (Wisconsin), and Jim Williams (New York)”  

 

 

 

 

 

 

 

   

 

  

 

 

The rest of the night is somewhat of a blur…the day ended with our cast gathered in a suite sharing until the wee hours of the morning about our lives since our tour ended.   With just a few hours sleep, it was time to wake up and make our way to rehearsal for the “Era Show” to be performed that evening.  The casts from each year represented performed a few songs from their show.  I hadn’t laughed that hard in a long time but the Casts of 86-87 still had IT!  

 

 

 

 

I know most of you don’t know any of these people but I just have to include these pics for my own keepsake and those in the cast who couldn’t come.  Jim, these are for you especially!  After all you did, it’s just wrong that you couldn’t come afterall!!  Precious people….uh, Dave, why are you in almost every shot?…

   

  

  

And then it was over…just like that…in less than 48 hours, Rolf and I were back on the plane  headed for home.  There is so much for which I’m grateful in this experience…for Rolf making it possible on our end to even make the trip, for his willingness to participate in the fun and for embracing these friends of mine from so long ago.  I’m so thankful for the friends here in SB that gave of their time to care so sweetly for all the kids and I’m blown away by the big kids’  ability to keep the secret, willingness to let mom and dad go away without incident and by their mature support in general .  And, as for the members of Cast C, well, I’m humbled.  The generosity you’ve extended to a friend you haven’t seen in 25 years is quite remarkable.  Your efforts leading up to the reunion and throughout the weekend have left me feeling affirmed, loved, honored and inspired.  Our cast has seen it’s share of heartache and loss in the years since we toured and sharing a bit of ourselves with each other this weekend brings a deeper awareness of hope and encouragement knowing we are not alone…we continue to carry one another in our hearts…and that is the greatest gift -as was the laughter.   Oh, the laughter!!  How fabulous it was to laugh!  🙂     Bless you dear friends…and thank you for EVERYTHING!  

And lest you think this post is a little self-promoting on my part, let’s not forget that it all comes down to this little guy…  

  

This weekend would not have unfolded the way it did if it weren’t for Rudy…it was a real thrill to share so much about Rudy (and family) to a community of Uppies spanning 40 years!  And I sure pray I have the opportunity to introduce Rudy in person to the greatest cast ever – see you in 5 years Cast C!!!!  

 

 

 

 

 

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.