My computer has been acting up the past couple of days and I wasn’t able to commemorate Rudy’s 17-month bday so here’s a quick, belated post!  Rudy got a special treat on Monday with a visit from Earl the blogging monkey.  Earl belongs to a friend from church and is a fellow wordpress blogger…he came and brought some love and smiles to Rudy and helped us celebrate 17 months!!!  Well done Rudy!!!  You’re doing great….

 As of yesterday, Rudy is on his 2 new pulmonary hypertension drugs…Tracleer and Viagra.  The Tracleer comes with ALOT of paperwork and instructions for monthly blood tests to keep tabs on his liver function as well as monthly consults with the specialty pharmacist…all very much routine but a little intimidating.  The Viagra (Revatio) is dispensed every 8 hours so we’re back to a staggered med schedule which discourages me for some reason this morning.  I’m sure it will all become second nature like everything else in Rudy’s care but today it’s new and different and I don’t have the energy for “new and different”…I just pray the meds work without any adverse side effects and help Rudy in his slow journey from point B to point C.  It’s funny how there are days when nothing is particularly “wrong” but  still it takes all you can muster to remember “right foot, left foot, right foot, left foot”…crazy stuff!  Okay, I’m off to officially update our med schedule!

Boy, I sure wish I knew the answer to that question.  Although there weren’t any major surprises in the results of Rudy’s heart cath on Thursday, I have to say the disappointment over his lungs is weighing heavy on me.  I guess I expected his lungs to show significant improvement because he is so much bigger, stronger and looks so much healthier than ever before.  To hear Dr. Dan say “he’s not a strong candidate for the Glenn at this point” took me by surprise and left my stomach in knots.  Deeply disappointed yes, but at the same time, I don’t want the disappointment to overshadow the encouraging report on his heart.  God has allowed Rudy to thrive with a shunt he was expected to outgrow months ago!  One of many miracles along the way that is getting us from point A to point B.  And so we wait with our weight of mixed emotions and re-align our hearts and minds to living in limbo a little longer (the alliteration there is kind of fun to say 5 times real fast).   We haven’t heard word yet from the pulmonologist whose consult will hopefully help direct the cardiac team in their decision-making process but Rudy does see Dr. Harake (SB cardiologist) tomorrow morning so we hope, hope, hope he has some news for us. 

To add to the list of reasons to worry, both boys had issues surface this week that were out of character for them and it’s hard to know whether it’s just normal pre-teen boy stuff or stress-related behavior.  I feel like Steve Martin in the movie “Parenthood”.  Have you seen that movie?  I remember thinking it was funny when I first saw it in college but now I watch it and just howl with laughter as I can TOTALLY relate to it’s portrayal of parenthood.  Anyway, there’s this one scene when Steve Martin is distressed over his young son’s issues with anxiety and is fearful that how he responds in that moment will mean the difference between his son becoming a well-adjusted, valedictorian college graduate OR the kid who locks himself in the clock tower on campus in a shooting rampage!  That’s how I’m feeling this week…like I could “blow it” on so many levels…well, not “could blow it”, “HAVE blown it” in the way I’m handling life and my kids in this big bubble of disappointment and fear.  Today I wrestle with the question “how do you help your kids navigate a journey like this in a healthy, hopeful way when you are having a week when you can’t seem to do that for yourself?”.  

I’ve been so consumed by how I’M feeling that I totally forgot to commemorate Rudy turning 16 months old on Monday!!!  SIXTEEN months…that means we’ve had Rudy home for over 9 months!  With all the joys, heaviness, victories and stomach knots…it continues to be remarkable!!!!

After all the consent forms and information gathering, Rudy was prepped and taken to the cath lab a little before 8am.  Rolf was able to accompany Rudy into the lab as long as he dressed appropriately…good look for him:

So, he’s safely in and sedated and we should hear something in a couple of hours…

Okay, so I’m probably sharing too much information about what’s going on in our household but be thankful it’s not as detailed of an account as what Max and Livy were discussing this morning as they compared vomit stories with one another.  Ha  Ha  As it turned out,  Rolf stayed out in the living room all night keeping an ear on the sickos…everyone’s tummies finally settled down about 2am.  I stayed in our room with Rudy and so far he’s doing fine.  Unrelated to the events of last night, Rudy had an early morning doctor appointment with a local ENT (Ears, Nose and Throat Doc) so I got him up, ready, out the door and back again before 9am.  First thing this morning, Olivia was pretty weepy and cried as she said, “the worst part of throwing up is that I can’t be close to Rudy” (sweet girl)  but by the time I returned home, she and Max looked chipper and were soon eating saltines.  ‘Praying for a day of rest for the kiddos and a productive one for me as I finish up a few details before tomorrow. 

Although sympathetic to his siblings, Wilson kept his distance and occupied himself with a good book…