We don’t know where he finds the time, but Rudy seems to have taken up yoga. We believe some of this comes out of his practice of emptying out his crib several times a day. There just comes a point when we tire of the game of putting everything back in there. So I guess he needs to do something to occupy himself. Maybe he’ll realize someday that throwing your pacifier away leaves you with decidedly fewer alternatives, but in the meantime we give you the Sucking Foot Pose.
Valuable Rudy swag will be awarded to anyone who sends a video proving their own mastery of the Sucking Foot.
There wasn’t any word this week on Rudy’s sleep study results but we did finally receive the 3.0 Ped Shiley trach (1 of 4 ordered) from crApria that was originally ordered on February 22 when Rudy’s trach was downsized. It only took 3 months, 6 phone calls and about 5+ hours of my time this time – well done crApria!! Oh man, don’t get me started, but I am so grateful for Rolf’s ability to procure enough trachs during the last hospital stay scavenger hunt to get us by. We really are blessed to have so little to rant about but dealing with Apria makes up for any headache-deficit we may have!!
On a much sweeter note…Rudy is perking up and acting like his bright self again. He’s still congested but it’s definitely better and he is sleeping better at night. After another full week this past week, the house is quiet this weekend with both big boys gone on a teen retreat at Point Loma in San Diego. We are missing them but we’re having some fun of our own with bbqs and, of course, watching the Indy 500 on Sunday!!!!
Okay, so this video really doesn’t have anything to do with “Rudys Beat” but I had to post it. Wilson enlisted the help of his brothers for an English assignment…he produced an anti-smoking public service announcement and the look on Rudy’s face when the boys walk up to him in the video is priceless. It’s another 4 minute video so it’ll take a bit to buffer…
Happy Memorial Day Everyone…I hope your weekend is filled with bbqs, gorgeous weather and a peaceful heart (don’ t think about Apria, don’t think about Apria, don’t think about Apria) too. 🙂
Rudy developed his own way of playing mama's guitar this week....but then decided chewing it was more fun!
So much livin’ going on here we haven’t had time to sit down and post. We’ll update you soon on all that’s been going on with the countdown to the end of school, birthday celebrations and a boy with junky lungs. But even in the midst of this, the impulse to dance is hard to suppress (especially when Miley beckons…).
As Rolf and the boys headed out of the cul-de-sac Wednesday afternoon, they spotted a mama duck and her ducklings making their way toward Lake Los Carneros across our neighbors lawn. The boys brought the family of ducks to Olivia’s attention who was playing nearby and Livy was so taken by the sight that she left her electric scooter behind on the corner to help escort those adorable ducklings safely to the lake! Neighbor Jannele joined the escort detail and she & Olivia even stopped traffic on La Patera Lane to insure they’d reach their destination safely. So fun!!! Livy was over the moon as she relayed the whole experience to me and eager to print the pictures Jannele took with her camera phone…(oh, and she did get her scooter back…Jannele found it sitting on the corner where Livy left it and kindly brought it back for her.)
Hoppin' off the curb to catch up with Mama...
Stickin' together across the street...
PRECIOUS!!
Rudy didn’t get to experience the duck parade in person as he fell asleep within minutes of getting home from L.A. but word on the street is this family of ducks gets around quite a bit so maybe he’ll see them on another one of their excursions. 🙂
Ironically, we saw another family of “Ducklings” at church on Sunday. Pastor Jake and his wife Laura asked Max and Livy to do a skit with them to illustrate the sermon lesson…a look at the “perfect family” and a “real family”. So, the Duckworths and the Geylings joined forces to create the Duckling Family…it was cute. ‘Thought you might enjoy it too. The video is 4 minutes long so it will take a while to buffer…be patient. Ha Ha
Rudy continues to struggle with a junky trach due to a bad cold and he has slept long stretches each day since returning home from L.A. So, as he continues to recuperate, Rolf and I continue to follow up with Dr. Corazza and docs at UCLA by phone. I spent some time on Friday researching the neurology terminology in Rudy’s latest diagnosis which helps us in compiling a list of follow-up questions. Dr. Corazza wants to see Rudy again in 6 weeks and in the meantime, Iwould like to pay another visit to the opthalmologist Rudy saw last year. Damage to the occipital lobe of the brain can cause loss of peripheral vision or depth perception which could explain some of the ways Rudy compensates in his therapy. I’d like to follow up with him with this new information and dig a little deeper to determine whether or not there is any vision impairment. There is certainly a list of things we want to follow-up on but thankfully none of it is critical at this point. We can take our time and continue to work through the details thoughtfully. Although Rudy is more tired than usual and obviously uncomfortable due to his cold, he is smiling and happy at home. Thank you for your continued prayers…you are a blessing to our family!
At a quick glance, it looked like Rudy was getting ready for an action-packed waterpolo match this morning in the Neurologist’s office but actually he was prepped for his first EEG…it didn’t hurt him but it sure pained me to try to keep a 2 1/2 year old still and occupied for over an hour. Seriously, STILL. How is that possible? I did my best and pulled out every trick in the book but I’m not sure we got enough usable data. We’ll see…we have to wait a few days for the results. 🙂
Uh, yeah, Rudy didn't like this cap...
Our week of “challenging tests for a toddler” continues tomorrow with our trip to Children’s for the sleep study. Rudy and I will head down to LA mid-afternoon to beat the traffic and the test will be tomorrow (Tuesday) night. Please pray that he’ll be healthy and the study is successful. He’s so much more aware than he was even last November during the first sleep study that I’m curious how he’ll tolerate all the sensors and lines to which he’ll be connected again. I’m praying he’ll fall asleep soon after we get to the lab before they even start connecting him to all the lines. The sleep study data is read and interpreted by a pulmonologist at Children’s before it’s sent to Dr. Pornchai at UCLA so we’ll have to wait a while for the results…it took a couple of weeks last time so we’ll need to be patient.
I just have to share these pics taken of Rudy and our neighbor’s dog,Scout, on Friday. Our other nurse-friend/neighbor Jannele offered to watch Rudy for us so the rest of us could all go to Olivia’s school performance of “High School Musical”. Scout and Rudy took an immediate liking to each other and Scout didn’t leave Rudy’s side…she even wimpered whenever Jannele moved Rudy to a different part of the house…tooooo cuuuuute!
Rudy's new BFF
Rudy getting some Scout-love!
Precious! Thank you, dear ones, for your prayers…we are humbled and grateful!!!
Her sense of organization was clearly handed down to this kid…
Seriously, his desk looks like this all the time...we didn't need to tidy up for the picture!
This one exhibits hereditary crafting skills…
Max's chore was to flatten boxes for recycling...he got there eventually
This one inherited a love for the stage…
Livy after this weekend's school show
This one has her uncanny ability to light up a room with a smile…
I could write a lot about Trish and the mother that she is, but it wouldn’t add much to what’s so evident to anyone who’s seen her in action or has even passively been following Rudy’s Beat. Her devotion and love is shown daily in her concern for all of our kids and especially in the way she assumes the added burden of managing the care of a medically fragile child. We are so blessed through you, Trish, and we honor you today. Happy Mother’s Day!
And probably no better way to show it than a dose of Rudy-love! Roll the video:
Quick Medical Update: Things have calmed down here after the seizure episode, but now Rudy caught himself a cold and some conjunctivitis. He’s not really thrilled about the eyedrops and is a little less perky that usual, but still the pleasant trooper. Expecting all of this to get cleared up before the EEG Monday and then the sleep study on Tuesday.
Thank you all SO MUCH for your prayers…it was a long night and we’ve had a long day of bureaucratic leg work but we’re ending the day with a neurology appointment on the calendar so we’re pleased. Rudy woke up with a smile this morning and is particularly happy now that the big kids are home so he doesn’t seem any worse for the wear. All in all, we’re so thankful for how last night unfolded…many blessings in the midst of the latest twist.
As Rolf mentioned, it was Wilson who brought Rudy’s seizure to our attention (BLESSING #1). Rudy was fast asleep and Wilson went to kiss him goodnight when he noticed the excessive amount of drool and twitching mouth. At first I thought maybe it was just a muscle spasm but then suspected it was a mild seizure when we woke him and he wasn’t responsive…it lasted about a minute. We called (our friend/neighbor/PICU nurse) Tera to come over and help us assess the situation (BLESSING #2) and just before she arrived, he started another seizure. Tera confirmed right away that, indeed, he was seizuring with minimal movement of his left arm & leg and began making some calls to Cottage SB to let them know we were on our way. Rolf got on the phone to UCLA to give them a heads up (protocol for us any time we take Rudy to the ER here in town) and Dr. Marie was the fellow on duty (BLESSING #3). Because of her first-hand knowledge of Rudy’s history, she began making arrangements for Rudy’s transport to UCLA if the situation warranted an admit. I gathered Rudy’s equipment and we were out the door in minutes. Rudy had a total of about 4 seizures during this time and thankfully Rolf had the presence of mind to pull out his video phone and we captured a couple (BLESSING#4) which proved helpful in the ER since he didn’t have any other episodes after that. Rudy was pretty calm but by the time we got him to the ER, he color was concerning and he was quite distressed. The two attempts at an IV made him epic-mad but the tantrum drained what energy he had left and he fell into a deep sleep soon after…so much so that he didn’t need to be sedated for the CAT scan. The ER staff caring forRudy were great (BLESSING #5) and we appreciated the time the ER doc took to explain the situation to us…as far as we understand now, it was confirmed in last night’s scan that Rudy did have a series of small strokes likely caused by severe dips in his oxygen levels early on. This is something Dr. Rick warned us about while we were still at UCLA but, at the time, this was the least of our worries so we shelved this information and there was never really a reason to follow-up on it. Last night’s doc wondered why he hadn’t had seizure activity before this and there isn’t any clear explanation as to what triggered it last night. Rudy was prescribed an anti-seizure drug (Keppra) to be taken twice daily and discharged. We got home at 3am (Thank you Lisa for hanging with the kids! – BLESSING #6) – and managed to sleep a few hours.
We are blessed to have two good pediatric neurologists in town and today was spent taking the steps necessary for insurance to get Rudy in to see one of them. We have an appointment Thursday morning at 9am (BLESSING #7 considering the next available appt isn’t until mid-June!!!). Hopefully we’ll get more helpful information then. In the meantime, I need to make several calls tomorrow to Rudy’s other prescribing specialists to notify them of his new medication. We pray fervently this will turn out to be an isolated incident but, in the event it’s not , we sure want the team at large to be informed and to help us keep an eye on the big picture. One very secondary but potentially significant silver-lining in all this is Rudy’s eligibility for CCS (Califoria Children’s Services). He has been repeatedly denied and the last very firm, door-shut denial was due to the fact that his diagnosis did not fall under any of their neurological labels! This new diagnosis may be the “label” he needs. I know, it all sounds a bit twisted but maybe this will allow him to get the services we (and his therapy team) believe he needs (BLESSING #8?). We’ll see…
In any event, thank you for praying and please continue to do so. Our concern lies with the big kids too…we really didn’t get a chance to check in with them before they headed off to school this morning and Max called mid-morning worried and weepy. I think they are all reassured this evening but we’re all left feeling a little insecure. I can’t believe I’m going to say this but heart issues feel so much more straight forward to me right now compared to brain issues. I hate bobbing in unfamiliar waters…:)
Earlier in the day on Monday, Therapist Jodi successfully distracted Rudy with toys until...
...he realized OT Kris was getting him to stand! Ha Ha
I’m not sure how people will feel about the “seizure video clips” (The vote around here is: Wilson and Max think they are weird but okay to post, Olivia thinks they are disturbing, Rolf’s not home to vote). I’m posting them below for our records…feel free to view them if you’re interested. They are mild, focal (partial) seizures and by no means graphic from a clinical perspective but it is kind of hard for me to see the glazed, confused look in Rudy’s eyes.
I’m a freak! I have an absolute mountain of chores and paperwork that I simply MUST get to today (my first full day at home in over a week) and I’m glued to GMA’s coverage of the royal wedding and spending WAY too much time trying to figure out how to print the Official Royal Wedding Programme that was just released to the public! Yep, I’m a freak…
Longtime friends know this about me…my parents and I were on a vacation when Prince Charles and Diana wed in 1981 and I have a very vivid memory of sitting in our hotel room watching the wedding live in the middle of the night. I soaked up everything Diana and when she died, again, I stayed up to watch around-the-clock coverage (remember Grace?). The hoopla over Prince William and Catherine’s wedding has been a fun distraction and, shamelessly, I will be up watching all the pomp and circumstance live like I did 30 years ago! Ha Ha
Rudy is pretty uninterested in all that but he is keeping himself very busy these days as his world here at home becomes gradually bigger…
Not only is he getting around more and more at home, but he is also getting around on the town too…he had another celebrity meet and greet at a breakfast Rolf MC’d last week…can you guess who it is?
Can you figure it out? Think...80's icon......Think "Sports Illustrated" or interior lighting...Tah-Dah! Supermodel Kathy Ireland!Rudy is living the high school fantasy of many men in my generation!! ...a little snuggle with Kathy Ireland 🙂
After the thrill of meeting Kathy Ireland, Rudy had a blast watching a flurry of children hunting for easter eggs at church on Sunday. A fun Rudy-memory-maker for the big sibs especially…
Wilson and Rudy staged and ready to watch the hunt!
With just 6 weeks left until summer vacation, we are finding ourselves thrust into the end-of-the-year tidal wave of activity…special school performances and trips, preparing for state testing and two very special graduations from elementary school and middle school for the boys, doctor appts, immunizations and keeping everyone motivated in general as the final countdown approaches. The challenge, actually, will be to keep myself motivated…with all the heightened activity this spring and preparations for the big boys’ enrollment to their new schools NEXT year and our efforts in getting some of Rudy’s future therapy needs figured out, etc, etc, etc, I’m pretty much ready for the lazier days of summer!!!!
Rudy had his routine appt with pulmonology at UCLA on Tuesday. It’s always good to check in with the folks at UCLA but the exam didn’t generate any new news or plans. We can’t move forward with decannulaton of Rudy’s trach until he has his sleep study…I’ve been working to get the study scheduled at Children’s LA for the past 2 months and it still isn’t on the calendar…we’re waiting for their pulmonologist to review the order. Once we have the doc’s confirmation, the earliest available slot isn’t until June so we could be waiting a few months. (patience…patience…patience)
We sure had fun celebrating Wilson last week on his 14th birthday which offered a few new firsts for Rudy including….
…his first “Looking Good Santa Barbara” clean-up day!
This annual, city-wide clean up day fell on Wilson’s bday this year and he initiated our family’s participation as part of his day ‘o celebration! We enjoyed working alongside some friends from church on a gorgeous Santa Barbara day and got some great exercise weeding and cleaning up a local park…
…and his first “Teenage, Boy/Girl Party”…
Gone are the days of themed bday parties with silly games and novelty cakes for Wil…this year he asked for a gathering of friends to “hang-out” and eat pizza & smores! It was such a blast to watch Wilson host his friends…making sure everyone got drinks and food, setting up the music system and keeping the tunes rolling all night, paying attention to little details and having a great time. Although we were prepared to set Max, Livy and Rudy up in another room with a good movie to give Wilson and his friends some space, they actually fit into the mix sweetly and Wilson was gracious to let them stay and “hang out” with the cool teenagers the whole evening! Rudy, of course, LOVED the throng of pretty girls that surrounded him a good bit! Ha Ha Rolf and I spent most of the evening sitting on the couch twiddling our thumbs as there were no games to facilitate or elaborate scavenger hunts to produce, but instead we got to sit back and watch the dawning of a new era in the Geyling household…
I tried to sneak in a little festive ambience but the hobo-clown got vetoed and promptly taken down!!!Fun in the avocado tree!Never too old to climb a tree!
The sun has set at the end of a long day and so has Rudy...
We had a bit of a breakthrough with Rudy’s interest in eating this week. Rudy has transitioned over the past several months from full-on food aversion…to a passive resistance to us putting anything in his mouth…to accepting small bites of baby food!!! He still gags if we put the spoon in his mouth or if he gets too big of a bite BUT if HE initiates contact with the spoon like he started doing with Rolf this week, he’ll come back for more as you can see in this video…
Could this be the dawning of yet another new era in the Geyling household? I know, baby steps but “yeah!”.
Our spring break has been fun…after the rainy day hair styling extravaganza last Saturday, the weather cleared and we enjoyed a trip to the drive-in double feature one evening, a visit to the zoo with friends, a couple of afternoons at the beach and a trek to Ventura for a WalMart run and there is talk of setting up a Lemonade/Avocado stand later today! Rudy has tagged along for most of it but did stay home with his respite nurse for the beach outings.
I’ve really been blessed by how well the kids have gotten along this week. They certainly have their moments of sibling strife but this week there just seemed to be an atmosphere of finding joy in one another and I treasured it. They all sure smothered Rudy with kisses and hugs and he literally glowed with every glance from a big sib. Wilson and I were playing with Rudy yesterday and at a particularly poignant moment in our discussion, I asked Wil if he ever thinks about losing Rudy and he said, “yeah, alot”. I told him that I was sorry he had to live with that kind of worry and he said it was okay because he wouldn’t change a thing…he wouldn’t have wanted not to have Rudy at all. Yep, I agree!
Today marks 30 months for Rudy…2 1/2 years old! Another monthly milestone and 30 months for which we are profoundly grateful. Each day that turns into a week that becomes a month with Rudy is an absolute gift – a miracle that we pray we don’t ever take for granted.
Happy 30 months Rudy!
Ornery Rudy!'Bout the only animal Rudy could actually see at the zoo and even then he was more interested in watching the kids look at the gorilla!Ahhh, spring fever has hit!
Trish’s Happy Place…a visit to WalMart and a stop at Chick-fil-a…seems to be a happy place for Rudy too!
Rudy's Beat 