Up And At’em

Rudy slept soundly last night and woke up all smiles after his episode and subsequent trip to the ER yesterday so he went off to school…:)

Based on the mild seizure he had last month and the series of seizures he had yesterday, it appears Rudy is no longer responding to his current anti-seizure medication (Keppra).  The ER doc consulted with Rudy’s neurologist and sent us home with a new prescription for Trileptal.  The ER doc was reassuring and is certain Rudy wasn’t experiencing any new stroke activity (based on the type of seizures Rudy had) but it sure would be nice to know why he’s seizing again all of a sudden.  What was concerning about yesterday’s episode was the length of the seizures.  Rudy began a mild focal seizure on the school bus on his way home from school and his nurse timed it at about 10 minutes.  He continued with the mild seizure at home which traveled from the left side of his mouth, to his tongue and then back to include his mouth.  He was pretty wiped and was left with a lazy left side and at one point his whole body turned blue which led to the decision to pack him up and meet Rolf at the ER.  Although concerned, we were relieved he fussed at the prospect of putting on a hospital gown and getting onto the bed to be examined…he definitely knew where he was and that he didn’t want to be there!  Ha Ha

I gotta give the big kids a grateful shout-out…Max and Olivia opted to stay home but were very helpful in getting Rudy in the car, out of the car when I thought we might need to call 911 instead, and then back IN the car when I determined I could take him after all.  The scene was a little confusing and unsettling but the kids hung in there and did whatever I asked them to do without question!  Wilson who was still at school had to arrange to get himself home and all were safe and sound when we got home from the ER just in time to reorganize and get to the high school for Wilson’s music dept. awards assembly.  Rudy was so wiped and doped up on Ativan that he was content to sit in my lap during the assembly and barely flinched at the sudden bursts of applause…sweet boy!

So we find ourselves a bit preoccupied again and a little frustrated but I don’t want yesterday’s concerns to overshadow the neat milestone achievements Rudy had this week…like on Sunday when he experienced his first official Sunday School lesson at church…

…and again on Tuesday when he was particularly energetic at therapy and NOT content to stay in his little corner of the therapy clinic…his PT tried a little supported walking exercise!

We’re also super excited that Rudy mastered sitting up by himself from the prone position…check him out this morning…

So, thank you for your prayers yesterday especially!  We are ever-grateful for our Rudy’s Beat community.  Neurological concerns are scary but we are grateful that Rudy’s seizures are mild and he is quick to bounce back and for the good care we continue to experience at our local ER.  There is much for which to be grateful!

BTW, we still haven’t heard any sleep study results but Rudy’s next heart cath procedure at UCLA is confirmed for Wednesday August 1st!

Blessings all…

 

Rudy’s New ASP!

Rolf caught a vision for his latest invention a few weeks ago and debuted it today…

…Rudy’s Adaptive Swimming Platform!

Olivia assisted him in submerging it for the first time while Rudy looked on with great anticipation…

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And then Rudy got his first try at the platform…Tah-Dah!

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Even Olivia couldn’t resist the lure of the platform fun…

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Here’s some live action footage of the fun…

I suspect we’ll get a lot of great use out of Rudy’s ASP this summer…well done Papa!  Further proof of “where there’s a Rolf, there’s a way!”

Misc. Comings and Goings

Gosh, sorry we haven’t posted in awhile…truth be told, I’ve been waiting to post the sleep study results but as of Friday, Rudy’s pulmonologist at UCLA hadn’t heard back from the folks at CHLA with the report yet so we’re still waiting.  Hopefully we’ll hear back this week.  I’m also waiting to hear confirmation on Rudy’s heart cath date in July so there are still a number of details that are up in the air for our family regarding the summer schedule which is making it hard for this type A personality to relax.  🙂  We have a day trip to UCLA on July 9th for a couple of appointments and then again later in the month for the heart cath with appts with Rudy’s specialists here in Santa Barbara in between so July will be full with medical stuff but I’m working hard to keep the rest of the summer medical appointment/procedure-free.

We celebrated another friend’s wedding, Mother’s Day, a couple of end-of-the-year school performances AND Rolf’s Birthday since we posted last!!!  We sure haven’t been lacking in celebrations this spring!  🙂  Rudy has hung in there through most of it but he sure prefers hanging out at home…especially now that we’re spending more time outdoors in our backyard.  Rudy is content to play in his wading pool for hours (if we’d let him) and laughs his big belly laugh while watching the big kids play their crazy games in the big pool.  He’s getting pretty cocky on his little trike too and likes to head full speed down the incline of our driveway into the cul-de-sac!  I have to admit that I’m beginning to wonder if the increase in physical activity puts too much strain on his half a heart…a heart-mom worry that I haven’t really experienced yet…but then again, I’m not sure he’d have it any other way and the quality of life benefit is certainly abundant so I try to tuck away the worry and trust God, as always, for every detail.

Here’s a quick look at some of the fun…

Being on “Rudy duty” is particularly fun when it involves a pool, beach towel and bottle of sunscreen!!! 🙂
Although Rudy didn’t want to come out of the pool, I tried to teach him that there’s nothing quite like an “after swim” rest on the lounge chair!
I felt well-celebrated on Mother’s Day with Olivia’s sidewalk greeting, cards from the big boys and…
…Rudy’s school project! He helped fill the pot with soil!!!
The big guy celebrated the 5th anniversary of his 40th birthday on May 18th!
At Rolf’s bday dinner, Rudy licked the salt off chips and finger painted with guacamole!!! Yippy!!!
One of the benefits to all the extra physical activity…some good zzzzzzs! 🙂
That cute image deserves a second look…a little nap wrapped around Daddy’s arm is a little piece of heaven!

Okay, I’ll stop with the miscellaneous post for now…hopefully we’ll have something specific to report this week from UCLA!  Ever grateful…