“Downward” Progress

‘Just a quick note to let you know that we saw Dr. Shapiro yesterday (UCLA ENT) and all looks good in her area of expertise.  She said Rudy’s airway looks “beautiful” and even let me take a quick look down the scope – very cool.  She’ll want to follow up with us sometime in April after the repeat sleep study (yet to be scheduled).  Just like last time, if Rudy passes, we’ll plan a strategy for decannulation but if he doesn’t then we’ll want to make a point of seeing Dr. Shapiro more regularly until he is strong enough to wean.   She did prescribe a bigger trach size since our big boy is growing out of his current size…which is why we’ve had such a time with his trach working itself out lately.  The new trach tube size will be the same in diameter but longer so it’ll be more secure.  ‘Hopefully this will eliminate the deluge of late night trach changes we’ve had recently. 

Hey!  Speaking of “deluge”, Rudy overcame another big developmental hurdle on Tuesday evening.  Check this out!…Wunderkind can now get himself out of the sitting position when he gets tired! 

After a bit of a plateau, it’s fun to watch Rudy in a season of rapid progress mastering new skills of which he is so clearly proud!…and all of this growth & progress is being supported by a shunt 2.6mm in diameter through which ALL of his blood is being circulated!!  Amazing…thank you Jesus for each step forward (both big and small) for Rudy!!

23 thoughts on ““Downward” Progress

  1. Wow! Way to go Rudy. You are definitely in the Rock ‘N Roll Club now!!! Before you know it you’ll be singing Shake, Rattle and Roll!!

    I know you all are proud of Rudy! So nice to have such a positive post!

    Love you all very much — that’s right, I’m talking to you, Rolf. And you, Trish! And, Wil and Max and Livvy and, of course, Rudy!!

  2. Oh YAY! You are so mobile and clever, Rudy! I am so excited for you.
    I will teach you to climb trees when the time comes. You are already building a wonderful foundation.
    Your friend,

  3. I dreamed about Rudy last night….we were babysitting him and I was “freaking out” because I couldn’t find him because he was rolling all over the place…..finally I saw his chubby little hand waving at me from behind a big chair and I found him with an impish grin on his face!
    SO GREAT to see Rudy “getting down!!!!”

  4. Well, look at you Clinton Rudolf — you are learning so many new tricks. This will make you stronger and we pray that little walnut-sizeheart will keep chugging along. All of us are so proud of you and join you in clapping at your successes.

  5. Rudy—you are a “going” guy ! Keep all tha activity up. I can just picture Mom and Dad smiling.

  6. GREAT Stuff going on for our little tiger!! Having some fun motor development and good reports from MDs as well is indeed a “PRAISE JESUS” moment! HUGs to you all and keep up the great therapy.

  7. That is awesome Rudy! You stay on your tummy and I hope to see you
    crawl soon!!!! It’s good for the development of you brain!! You’re my star!

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