Reality Check

This week has been a bit of a reality check as Rudy has had both developmental and medical evaluations.  Here’s a recap:

Rudy’s IEP was on Tuesday morning.  This is an annual meeting of Rudy’s educators to establish an individual educational plan and discuss his various academic, social and physical goals.  This year’s IEP was particularly comprehensive as it included a triennial reevaluation to determine Rudy’s eligibility for services.  The eligibility assessment team included Rudy’s special education teacher, his adaptive PE specialist, district phycologist, district nurse, the speech and language pathologist and occupational therapist.  All were in attendance today along with Rudy’s CCS OT & PT, his general ed classroom teacher, district special services representative, Rolf and myself.

There weren’t any big surprises and, in general, we couldn’t be more pleased with Rudy’s progress and attitude toward school.  He is motivated to learn (most of the time) and eager to put what he’s learning to practice (especially when it involves sporting equipment of any kind)!  😉  All in all, IEPs are a positive experience and Rolf and I always leave grateful for the community of professionals who pour so much energy and expertise into our boy. That being said, IEPs are also a bit difficult to face as they are designed to take a microscopic look at Rudy’s deficiencies and areas of need…even more so in the triennial.

The report presented on Tuesday determined Rudy’s eligibility and need for continued special education and related services based on the following criteria: Intellectual disability, Orthopedic Impairment, Multiple Disabilities, Health Impairment and Speech or Language Impairment.  One change is that as Rudy gets older and the academic divide between Rudy and his typical classmates becomes wider, the time Rudy spends in his special ed classroom becomes greater (the special ed/general ed split that was 50/50 the last couple of years is now more like 75/25).  In addition, the triennial report included approximate age equivalent determinations based on the psychologist’s assessments.  Rudy was tested in cognitive functioning categories like fluid reasoning, knowledge, quantitative reasoning, visual spatial processing and working memory (resulting in an average age equivalency of 3 years and 5 months) as well as in social/emotional functioning categories like communication, daily living skills, socialization and gross/fine motor skills (resulting in an average age equivalency of 3 years and 3 months)…it’s not something I dwell on too much but it does make me a little sad.

On Wednesday, Rudy had his routine appointment with Dr. Harake and monthly blood draw.  Thankfully there isn’t a significant change in the ventricle size or the tricuspid valve leakage since Rudy’s echo 2 months ago…still moderate to severe…and his hemoglobin level is still at 21.  Rudy’s next appt at the Heart Clinic/UCLA is December 8th and we see Dr. Harake again on December 20th.  In the meantime, Drs. Harake and Dan have recommended we schedule an appointment with Rudy’s surgeon so we are hoping to coordinate that consult with our trip down on December 8th.  We’ll see.

There has been a lot to process this week, my brain is tired.   It’s time to refocus and prepare for Halloween and all the fun of the next few days.  The holiday season is upon us and I’m ready!!  Let me be the first to wish you a Happy Hallowthanksmas!!!


Rudy at the pumpkin patch with his classmates today.
He picked out a good one!



9 thoughts on “Reality Check

  1. Oh, Trish. There has been so much to celebrate with Rudy over these years. Hang on to that. I know it’s hard to hear those numbers and see in black and white what Rudy has lost. But I give thanks for these years – which feel miraculous to me, given the horrors of those early months. And look at that smile! Just look, honey. Deep breath, okay?

    1. Okay!…Deep breath…right foot, left foot…deep breath…right foot, left foot! Love and appreciate you Diana! Thank you for sharing the joys and the burdens of this journey with us!

  2. Blessings to All esp that smiling boy.
    We don’t like numbers, but we know what a miracle the boy is and a blessing to so many of us. look at the pictures from 8 years ago and now he hits a baseball and holds a pumpkin and runs away !!! Happy Halloween, looking forward to this years little monster disguise.

  3. Trish..Haven’t seen or talked to you in so long. I keep up,though,with what is going on with Rudy. It feels like such a miracle. I forget,though,what you are dealing with day to day,month to month and year to year. I do know that it is no accident that Rudy was given the family he was given. Right foot,left foot,breathe. I could not agree more. Love to you and yours,my friend.

  4. I am eternally grateful that I know this amazing young man, who while everyday faces challenges, lets his bright star shine to others. I am in admiration everyday of the loving family that surrounds him. I am blessed to know you all.

  5. Well Rudy is the cutest pumpkin!!! I will pray for your mama-and-papa- hearts as you process all this! Without a doubt, Rudy is a treasure to you and your world! I am so glad he loves people, loves school, and he is just so darn funny! Give him a big squeeze for me and Cart with the cane!

  6. Love you guys and will be praying for what you have written here. So thankful to God for his faithfulness to Rudy and all of you. Hugs from San Diego!

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