Archive for May, 2012

Up And At’em

May 31, 2012

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…

 

Getting sprung

May 30, 2012

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!

I was having a pretty good day..

May 30, 2012

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.

I was having a pretty good day…

May 30, 2012

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.

Rudy’s New ASP!

May 27, 2012

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

May 20, 2012

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…

Sweet pic…

May 12, 2012

I love this boy!

Deeper Glimpses

May 10, 2012

From the start of our journey with Rudy, Rolf and I have attempted to be honest with the big kids and not keep important information from them that they are able to understand even if that information is bad news or scary.  It has been important for all of us to face the reality of our situation head-on and, hopefully, navigate all the ups and downs as healthy as possible.  I’d like to say Rolf and I have been really good at sitting down with the kids and “updating” them as needed with open discussions about how Rudy is doing and asking them how they are doing but the reality is that doesn’t happen very often.  The kids are usually informed by the quick call home after a hospital procedure or the mention of a dr. appt at the dinner table or, frankly, by posts on Rudy’s Beat and the intentional dialogue usually happens one-on-one during car rides from school or to an activity.  Sometimes I make an attempt to talk to the big kids about Rudy and they aren’t in the mood.  So, you charge along in the fast-paced life of a family that is growing up thinking you have a good handle on how everyone is doing and what everyone is feeling and then, out of the blue,  you catch a glimpse of your kids…a deeper insight into their thoughts…and you realize the impact of life’s unique experiences runs so much deeper than you hear about in those quick “check-ins” from time to time.

Sometimes it can come indirectly like when Olivia asked me if there are any “nursing” summer camps out there that she could sign up for this summer!!!  (Nursing summer camps? Yikes!  I have no idea)  Gee, I wonder what’s shaping that interest?

And sometimes it can come directly through an English writing assignment  that ends up getting published in the school newspaper as Max’s did last week:

Here, let me zoom in a bit…it’s worth a read:

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I so love that Max chose to write this article…I don’t think I’ve ever had the opportunity to hear his take on Rudy like this and a couple of things surprised me but mostly I love his “shout out” to Rudy’s doctors and nurses (timely, with this being “Nurse Appreciation Week”!) and his assessment that, in the end, the extra work involved in caring for Rudy is all worth it!  Who knows, maybe we have a future blogger or two or three in our midst?!  Ha 🙂  I hung Max’s article on the wall next to Rudy’s crib…a helpful reminder that the big kids are thinking and feeling and processing more than I give them credit for and prayer for their “heart health” is just as important as for Rudy’s :).

…a little poolside bonding going on among the big sibs. (I couldn’t resist capturing this moment of sibling bliss after a morning of bickering and spats…:)) I pray they grow to rely on and support one another more and more as they mature and continue to navigate life together ’cause there’s nothing sweeter than a sib with whom you’d also choose to be friends.  🙂

A Week to Commemorate

May 6, 2012

Last weekend we did a much-needed cleaning of the garage.  In the past, Rudy would scoot down the hallway and would be content to sit on the stoop to take in the action.  But this time he wanted to be part of things so he got himself down the stoop and had fun scooting underfoot.  Somewhere while we were busy moving stuff around, he spotted the great wide open, tore free from his O2 tube and made a break for it!

I’m outta here!!!

All the way down to the curb across all that brick and concrete; shredding his diaper and oblivious to the abrasions he was inflicting on his legs and bum with each scootch–yelling “bye-bye” louder and louder as the mailbox came in view.

How far we’ve come.

This is a milestone week for us as May 7th is the day Rudy came home from the hospital.  (astute Rudy fans might recall the first release being in April, but since we had to return shortly thereafter for a second stint we celebrate the day he came home for good.)  Looking at Greg’s discharge day slide show never gets old, especially when we see how different the bouncy 3 1/2yr old is from the fragile little guy who came home after seven months in the ICU.

Today also marks the start of Nurses’ Week.  It’s hard to put into words what we feel about nurses–they have become such a part of our life–from the ones who took care of Rudy for continuous 12 hour shifts; to the ones who pull shifts at our house; to the ones who pull together all those details and approvals; to the dear friends who have no formal responsibility but are always available for a quick consult when something doesn’t look right.  We love nurses–if you want to see some of the finest, scroll down to the second video below Greg’s discharge slide show.

Now, if I could only get down off this curb…