Happy Times

It’s the start of another week and the start of another week of STAR testing for the big kids.  STAR testing is staggered between their three schools so after two weeks Wilson is done, Max has another week left and Olivia is just starting.  🙂  And if our calculation is right, we are down to 28 school days left before summer vacation!!! Happy times…

Speaking of the school year coming to a close, we had so much fun with the kids’ teachers last week…there was so much fun to be had and so many teachers and guests this year that we had to spread the celebrations over two evenings!  ha ha  As always it was just such a great opportunity to honor and thank the kids’ teachers for a great school year as well as celebrate community!  The inclusion of Rudy’s teachers this year was particularly special as I’m still blown away by the fact that Rudy is in school!!  He ultimately transitioned well to his long bus ride and to being in his wonderful classroom and we couldn’t be more pleased with his experience.  When we stop and think about the number of people it takes to educate our son from his classroom teachers, to his therapists, to his traveling nurse and to the folks at the county office that coordinate it all, we are humbled and deeply grateful.

I’m so bummed because I meant to get a picture of everyone and I forgot!!!!  😦

In addition to all the fun of last week, we also had some medical stuff to take care of.  We had our first visit with the urologist on Thursday and were relieved that no action is necessary on Rudy’s bit and pieces at this point.  Dr. Cumes would like to keep an eye on him but doesn’t feel there is a need to intervene now so we can check that off the list as we continue to wait for the sleep study results and confirmation of the heart cath date in July.

Ironically, I was wondering just last week if maybe we could talk to Rudy’s neurologist about starting to wean Rudy off his seizure medication since he hadn’t had a seizure since his onset last May. He did, however, seizure on Friday night so this could be an indication that he’s growing out of his current dose.  Once again it was Wilson who identified something was wrong…good job Wil!  Thankfully the seizure was mild and only lasted for about 40 seconds so we didn’t take him to the ER but I’ll need to follow up with Dr. Corazza today and figure out what our next step should be.

So there are a few things to follow up on this week including a blood draw I’m seriously delayed in getting done….yikes!

Oh, by the way, I’m hosting my “Silver By Trish” Spring Event this Friday and Saturday just in time for Mother’s Day and upcoming graduations.  If you are local, you’re welcome to drop by our home Friday May 4th from 5-7pm or Saturday May 5th from 2-6pm and take a peek at a variety of great gifts.  It has been a few years since I’ve managed to get this spring event on the calendar so I’m looking forward to it.  ‘Hope you can join us.  🙂

Okay, we’ll be in touch…thank you for your continued prayers…we’re so grateful for our “Rudy’s Beat Community”!!!

 

 

Summer Heart Cath

Rudy saw Dr. Harake (SB cardiologist) yesterday and he would like to get Rudy’s next heart cath on the calendar for sometime in July.  Right now the available dates are possibly July 18th but it will most likely be scheduled for July 31st or August 1st.  He hopes to go in and devote the whole time to coiling collateral veins so it could be another long session in the cath lab for all involved.  For some reason, I had it in my head that we would pursue the next cath in the fall so I was a little surprised by the summer target date…it doesn’t really matter when we do it but this will be a helpful date to solidify as I work to chart out our summer schedule.  We don’t have any big travel plans but between Wilson’s summer school classes at SB City College, Max’s desire to participate in a theater camp and Livy’s plan to live in the water, the summer is already starting to fill up!  Ha Ha

 

We’ll also need to look closely at any plans we may have to wean Rudy off the trach if he passes the sleep study.  It’s so much easier to anesthetize and vent Rudy during surgical procedures when he’s trached so it could be wise to hold off on weaning him with a procedure coming up.  There are a ton of “what ifs” in that scenario and may even be a moot point if he doesn’t pass the sleep study so we won’t worry about it now but, I admit, the thought of delaying decannulation is disappointing.  We’ll see…

 

Rudy sees the urologist tomorrow so we’ll have more to report then…in the meantime, have a happy day!

Dolphin-boy at La Arcada

 

Sleeping Soundly At Home

As suspected it took me a few days to recover from last Monday’s trip to Los Angeles and short night’s sleep…Rudy didn’t seem to skip a beat!  Ha Ha  It’s kind of sad when your son with half a heart has more energy than you do.  🙂  Needless to say, I’ve had a quieter week trying to catch up on life here at home.  We typically don’t get the sleep study results for a few weeks so we need to wait a bit but I’m so relieved they were able to get a good stretch of data during the study that I can live with whatever the outcome may be.  I did, however, buy this floatie swimsuit for Rudy at WalMart on our way home from the hospital in faith that he’ll be able to swim in our pool this summer!!

Speaking of the pool, yesterday was the official opening of the 2012 swim season here at the Geylings!  The water is FREEZING but that didn’t stop the big kids from spending the afternoon engaged in swimming and pool-related activities!!  Even Rudy took a spin on the stand-up paddle (SUP) board…

credit to Greg Lawler for this one!

This next week is a full one with our monthly visit to the cardiologist and our consult with a urologist in town to discuss Rudy’s, shall we say, lopsided bits and pieces.  His undescended testie may require surgical intervention but we’re praying the “ball will drop” as our friend Kim so eloquently put it and all will be well down under for the sweet boy.  We’re looking forward to our annual tradition of hosting the kids’ teachers for dinner (we get to include Rudy’s teachers this year!!) and a dear friend’s wedding here in town.  I love weeks that are loaded with things to celebrate!!!  Thank you again, friends, for sharing in the celebrations and concerns of this journey with us.  We’ll update as soon as we hear anything about the sleep study results.  Blessings…

Hallelujah!

We are done and the best news is Rudy settled down enough for the techs to get good data!!!! He can’t tell me anything specific but he said Rudy cooperated well!! Thank you Jesus! Now we wait to hear the results from Dr Wii…oops, iPhone typo…I mean “Woo”. :). Okay, we’ll head for home pretty soon after a stop for breakfast.
Blessings…