Either we’ve got some explaining to do or we’re having all kinds of fun with trick photography. Just got the call to take Rudy upstairs.

Got to UCLA by 7am as was requested for check-in. We’re case #3 so we got the paperwork done and asked them to call us so we didn’t need to keep Rudy in Pre-Op for the next few hours. Rediscovering the ways to occupy ourselves in the hospital. Already did some elevator dancing and now it’s cards. Trying to decide what’s next–Elevator Bingo or pretending the big dark tiles on the floor are alligator pits (first one all the way to the end of the hallway without falling in wins!)

Life imitated art recently when we had a rare Saturday morning pancake feast with all the yummy fixings!  Rudy joined us at the table and the events that unfolded were straight out of Laura Numeroff’s classic tale…remember?  “If you give a pig a pancake, she’ll want some syrup to go with it.  You’ll give her some of your favorite maple syrup.  She’ll  probably get all sticky so she’ll want to take a bath.”…and so the story goes with a domino effect of crazy happenings.  

Rudy, who continues to show more and more interest in food, wanted a pancake as the plate was being passed around.  Although he isn’t actually eating solid food yet, he wasn’t quite content to play with just the pancake…he wanted some syrup too.  It wasn’t long before Rudy coated himself with the sticky syrup and, you guessed it, needed to take a bath.  Olivia and Max offered to give him a bath while I cleaned up the kitchen but I admit there wasn’t much cleaning going on…I couldn’t resist sitting outside the bathroom door and listening to how the whole bath scene unfolded!  The two big sibs struggled with the energetic, squirrel-y and squawking toddler for an entertaining bath time that included a lot of singing and giggling… some of the more memorable quotes I heard from behind the closed door included…

Olivia to Max – “Max, Are you as sweaty as I am right now?“

Max to Rudy – “Put your hands in the air and let’s get CRAZY!”

Olivia to Rudy – “Rudy, NO!!  You don’t have your pants on!“

The whole morning was a sweet snapshot of normalcy and I enjoyed soaking it all in – even if the process tested my OCD boundaries!  Ha Ha

Speaking of favorite children’s book authors, the big sibs introduced Rudy to a Sandra Boynton book new to our library this week.  They, of course, have a bit different presentation style than we did when we read “Barnyard Dance” to them years ago…

Rudy couldn’t be more pleased to have his sibs home for summer.  This week has been spent purging and organizing bedrooms, catching up on odd jobs around the house and running errands in Ventura today.  Summer school and camps start next week.  Here’s a little pictorial recap of our summer so far…

We had breakfast in Summerland on our first day of summer…yum!  And, no, Rudy was not allowed to play with the syrup!

We unearthed a ton of fun hand-me-downs for Rudy during the major room purge…including the once coveted Jedi robes (circa 2002)!!!  Aaawwwww…

Olivia signed up for the summer reading program at our local library and Rudy was happy to follow in her footsteps!  

The big kids are all taking on more responsibility and are more and more helpful with Rudy…Olivia even wanted to learn how to change Rudy’s trach this morning.  Rudy sat still and Olivia did a good job.  🙂

 Rudy at Refugio Beach!

And so our summer is off to a great start…we have a slew of doctor appointments next week and a new therapy schedule to coincide with Rudy’s new summer school schedule so we’ll have some adjustments next week but for now we’ll enjoy the last couple of unstructured days we’ll have for a few weeks.  

ER docs watched our iPhone video of the seizure and consulted with neuro. They took some blood for labs and are going to initiate a med change.

Happy to be in street clothes cuz that means we’re going home!

Until they brought me to this stupid place again…

Rudy had an extended series of seizures this afternoon. Calmed down now and waiting for the docs to come up with a gameplan.

Till they said I had to go to this stupid place…

Stable now, but a series of seizures after school today that we had to get checked out.

I love this boy!

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”!!!

 

 

A McDonalds inside the hospital! I knew it was here but I DIDN’T know it was open 24 hours!!!!! Very cool! Breakfast, check!

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…