Almost….Just About There….

It's a big, big world out there and Rudy is ready to go places!

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…

Yea!!!!

 

Rudy and his BIC!!!

 

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!

14 thoughts on “Almost….Just About There….

  1. Eating the benefits ID card probably isn’t covered by CCS.

    And in 2 more years:
    The Santa Barbara Chinese school has provided education in the Chinese language and Chinese culture since 1984. Students (age 5 to adult) study once a week with a distinguished faculty of professionals. Classes are offered in three quarters during the school year (no summer classes), with approximately 10 sessions in each quarter. Each Sunday afternoon more than 80 students learn two hours of Chinese language and one hour of Chinese culture at the UCSb Camus.

  2. It is amazing to see Rudy’s progress this year…rolling over, talking, standing and now, the potential for going to school! All with that little half heart pumping away. Rudy has got to be some kind of outlier in the HLHS log books! What an amazing little guy in an amazing family. Love to all!! (and see you in 12 days!)

  3. So much fun to see this accelerated acquisition of new skills for the little man! That is huge to see him doing sit to stands!! Am so impresses with his unsupported sitting, in the blog last week. Amazing how good and powerful channeling God’s love into a little body does wonders doesn’t it?

    Hugs to all,

    love

    Kendy

  4. You wonderful little boy, Opa was wondering, what I was cheering about at the computer . We love you little man !!!!!

  5. Wow!!…. Rudy, that was a REALLY Cool trick!! we are so excited for you and continuing the prayers for all the info/unknowns your mom described today.
    Love,
    Aunt Andi

  6. Big boy Rudy! “The Stand” brought tears to my eyes….esp. Wil’s big cheer… It amazing me to think that Rudy’s seizures may have worked out for good….but I guess that’s just like the Lord to work that one out!

  7. WOW! and double WOW! I know how long the therapists have been working on your standing up and all that practice is paying off! Way to go, kiddo! I know you make them proud and all of us certainly feel proud that you are such a winner. Keep up the good work! Lovin’ you!

  8. Such marvelous news al around! Love the newest tricks…standing and sitting on command! Love that little guy!

  9. Watching Rudy bring himself to a standing position brings me to tears. That little guy is such a trooper and so special. And how blessed he is to have you all with him to encourage him and to love him along this journey. What a wonderful family!!! Blessings to you all!

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