Fingers Crossed!

It’s Sunday night and a welcomed quiet night at the end of three really full weeks!  In addition to a handful of doctor appointments with Rudy, this past week was also consumed with a bureaucratic tug-of-war that left me feeling exhausted and frustrated.  I’ll spare you the details but it’s situations like this week’s dilemma or battles with crApria that are so stupid in the bigger scheme of things and yet cause the most emotional turmoil for me.  It’s maddening!!  But it’s time now to let it go and look ahead at this week and Rudy’s procedure at UCLA on Tuesday.  Please pray that our plan to decannulate on Tuesday will happen as scheduled.  UCLA Anesthesia called on Thursday to conduct the routine pre-op survey to go over Rudy’s medical history and the fact that he had a couple of seizure episodes last weekend was of concern.  They would like to follow up with Rudy’s neurologist so we’re crossing our fingers that there isn’t any reason to postpone the procedure!  We’ve waited so long for this and another delay would be pretty disappointing.

Rudy had a good week…he slept a little longer each morning and was a bit more mellow than usual but he was happy and active.  He slept through his PT and OT sessions on Monday but made it on Thursday.  Although he was VERY motivated to practice walking with his walker, his physical therapist and I noticed a distinct change in his stability.  His left foot and leg were turned out prominently and pretty shaky when he put weight on his left side.  It seems maybe he has lost some strength as a result of the seizures unlike what we’ve noticed before but it’s hard to know for sure.  He isn’t lacking in desire, though…check out his workout today: (admittedly a long video, but it gives a pretty good idea of how hard and determined our little champ works).

He was also pretty proud to put on a show for us yesterday…this video just isn’t long enough…

Imagine how he’ll be able to sing without that tracheostomy!!!  🙂

We’ll keep you posted on what unfolds tomorrow…hopefully the call from UCLA giving us our call time for Tuesday!!  Thank you for praying us through another trip down south.  Blessings dear friends…

Stella and Rudy got to hang out today while their big sisters played soccer…too sweet!
Moments like these help put all the silly frustrations in proper perspective…

 

 

17 thoughts on “Fingers Crossed!

  1. Praying for Rudy and praying for you guys! Praying Tuesday’s procedure happens as planned and hoped for!

  2. Hi little warrior, Rudy. You work so hard to walk and walk. I like the new walker and know you are an inspiration to your therapists who work with so many children each day. God Bless all and wishing you success at UCLA. I love you “to the moon and back”…….

  3. Wow, the video of Rudy in his walker had me bawling and then the one of him singing put a huge smile on my face. Praying that the UCLA trip goes off without a hitch.

  4. This boy just has to stop stealing my heart. 😉 What sweet little guy… Love how he calls Daddy and his determination.

    Fingers and toes crossed for everything to go as planned.

  5. What will Rudy sing for his audition song on X-Factor next year? “Siyahamba”, “Walking on Sunshine”, “Walking in the Air” (from the animated ‘The Snowman’), “Heartbreaker”, or a song by Heart…?

  6. Wow…Rudy walking down the street brings tears…that is really an amazing accomplishment. (And Daddy…you are very patient with all the conversation!…”Daddy?” “Yep!” ) Hope and pray all goes really well tomorrow. Love to all!

  7. Sending prayers for all to go well today. So proud of Rudy! Remember when he was getting around by rolling, wrapping himself in yards of oxygen tubing?? Sheer joy, then and now.

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