Not sure if it’s due to improved lung function or just age and experience, but Rudy’s Udderball skills have blossomed!

Waiting in recovery for our room assignment. Short on things to do.

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Just had a long consult with docs. So grateful for such incredibly gifted people who care so much about Rudy.

More details later. We’re here for the night and probably won’t get to post much in depth. Just loving being here with this incredible kid. Thanks for praying.

We ate breakfast looking at the little buzzer-thingy. We went outside and kept a close eye on the buzzer-thingy. Dr. Rick paid us a visit which made it not as hard to keep staring at the buzzer-thingy.

At 11:15 we got a call from the cath lab and Dr Dan and Dr Harake reported that all the numbers are improved. They’ll give a full update later–not that status has changed remarkably, but things are headed in the right direction. They have found some collaterals they want to coil so they’ll be doing that for the next hour.

They were glad to call us with a more upbeat report and it feels surreal to get something other than bad news from a cath lab.

Getting some lunch so we can be ready to go see Rudy.

Well, at least one of us woke up with a smile at 0 400 hours! We got a call last night from UCLA to report to admit at 5:45am so it looks like Rudy will be first on today’s list … At least we won’t hit morning rush hour in LA ;).

Well, we’re happy to report that Rudy is almost officially accepted into the California Children’s Services (CCS) program!  CCS is a state program that offers a wide range of health services for children up to age 21 with certain health problems.  Rudy’s current therapy is provided through the Regional Center’s Early Start Program and will end when he turns three years old.  Normally this isn’t a concern as most kids with delays like Rudy’s are under the CCS umbrella as well so there is, from what we understand, a natural transition from Early Start to CCS services.  Although everyone working with Rudy considered it a given that he would qualify for CCS, Rudy’s road to CCS has been a twisted one. 

We were given the standard instructions by Rudy’s pediatrician and our Regional Center case worker as to how to go about initiating the CCS application process shortly after we brought Rudy home from the hospital.  As was expected, Rudy did not qualify initially due to Rolf’s income but we were told over and over again to push through the system as Rudy indeed would qualify for the Medical Therapy Program regardless of our household income.  Many applications, Dr. letters and current OT recommendations over the past year and a half led to a firm and final denial this winter with the stated reason being that Rudy’s condition did not include a neurological diagnosis that would put him in one of their qualifying categories.  As you can imagine, this was extremely troubling news to hear.  We feared that although Rudy had the developmental delay of a child with cerebral palsy, for example, his case would be lost in a big, nondescript crack just because he didn’t have the right neurological “label”!  The whole process was indescribably frustrating and a bit scary not knowing what other resources were out there for Rudy once he turned three.

As it turns out, Rudy’s onset of seizures in May just may be working in his favor.  Rudy’s pediatric neurologist had no problem sending in his recommendation to CCS after our first consultation based on Rudy’s stroke history, MRI results and seizure activity and, lo and behold,  our communication with the CCS office resumed shortly afterwards!  A packet of paperwork for us to fill out arrived as did the coveted BIC (Benefits Identification Card).  Now, we’re not getting our hopes up completely as he still isn’t officially accepted but CCS therapist Rachel came to the house this week for an assessment and when I asked her if she  would recommend treatment for Rudy based on her initial assessment, she said professionally but with vigor “YES!”.  Phew!  

In addition to the potential transition from Early Start to CCS, Rudy may also be transitioning to PRESCHOOL in the fall.  He will qualify for special ed preschool starting October 1st when he turns 3!!  Unfortunately, the Goleta School District special ed preschool program isn’t currently certified for non-ambulatory kids but there is a wonderful program in the Santa Barbara District that Rudy could go to if he is cleared by his doctors to go.  The thought of Rudy going to school is both remarkable and terrifying!!!  We just never allowed ourselves to look too far into Rudy’s future so now that preschool is potentially right around the corner, I am left feeling so very grateful and so very nervous all at once.  🙂  There is alot about this fall that is unknown and many details for Rudy that still need to fall into place but with Wilson and Max heading into new schools and the potential of our family managing 4 different schools (!!!! YIKES), I’m praying already for smooth transitions for all and peace for this mama’s heart that is anxious about sending her chicks in so many different directions. 

In the meantime, it’s “business as usual” around here…check out Rudy’s new trick…

Rudy is making super progress this summer and absolutely loving all the extra activity the big kids bring to his day…stay tuned for some fun pool footage.   The summer is blazing by much too quickly…Bless you friends!

OK, the surprise is done. Trish is having fun connecting with friends, reliving memories and dusting off a few of the old show tunes. Though I view being the Grinch’s understudy in 6th grade as significant theatrical experience, no one is all that impressed and they won’t let me into the reunion show (Divas!). This whole “Up With People” thing is a new experience for me and perhaps many Rudy fans, so let me give you and idea of what goes on.

Whenever you get a critical mass of Uppies in one room, a well-produced catchy production number is bound to break out.

There are happy people singing happy songs. Even the most jaded toe will start tapping. You start to feel good–like you’re special and maybe there’s hope for the world. Just in case you mood hasn’t approached giddiness, they’ve got just the thing waiting in the wings…(cue children of the world singing about a bright future)

Works everytime. Now, they release them into the audience and the inevitable sing-and-dance along cannot be resisted. Some get more caught up in the frenzy than others.

Hard to figure how Trish joined up with this crew. Must go ponder by the pool.