How tiny breaths teach us big things

11-month update!

This is just a brief update, but I promise to write more in the coming week!  IMG_2792 IMG_2809 IMG_2548

  • Struthers is now 11 months old and weighs 16 pounds, 8 ounces and we’re on the ‘chart’!
  •  After a brief time of being off oxygen during “alert, awake” time (excluding feeding, carseats or when he is retracting or wheezing), we are back on oxygen 24/7, and really have not been able to wean him down in volume (1/8-liter awake/alert, 1/4-liter sleeping or eating).  Struthers was just working too hard off of it, even for small amounts of time, and the time without it set us back a bit.  It required 8 days of prednisone to get him back to a reasonable baseline.  The on-call physician’s response to my Sunday afternoon call was, “Well, it sounds like you have a well-equipped mobile ICU there–Give him the nebulizer, oxygen, inhaled and oral steroids and we will touch base every hour on the hour until he’s better or we’re sure we need to admit him.”  Have I mentioned how much I love our docs?
  • We still have the G-button as well, but we are using it for tube feeds less and less!  MAYBE 2-3 times a week we utilize it to get him his needed caloric intake for the day, but we will also keep that through the winter.  The thought is that they don’t know how he’ll react if he gets sick, and he doesn’t have any room to slide backwards on the growth front, as that affects everything else too.
  • Struthers will most likely have a minor outpatient surgery coming up soon, likely mid-late November right after his birthday…more details on that later.
  • We are still eating homemade purees, with avocado, green peas, parsnips, pears, peaches, and oat cereal as favorites!  Eating still involves working on strengthening the jaw muscles, working with texture and coordinating swallowing.  We will have an upper GI and swallow study later this week (Thursday) to evaluate whether he’s still aspirating and/or refluxing.  Either of those two would most likely explain the inability to wean off the oxygen.
  • He’s finally using his arms and hands much more lately.  He still doesn’t push his head up or prop up on his arms during tummy time, but he has managed to twice get himself from his tummy to his “happy place” flat on his back.  He can sit unassisted for short periods of time, but not long, and I think he can’t breathe well that way and just gets tired from trying to do so.  Occupational Therapy continues weekly, and the amount of progress made from week to week is sometimes astounding, and sometimes discouraging.
  • The one area of development NO ONE is worried about is this kid’s verbal skills!  He LOVES to sing and talk…and from the clarity, projection and VOLUME of his voice, you’d never know he struggles to breathe!  He now has mastered “KeeKat”, “Dog”, “Bababu” (Baby Beluga), “All Done” (generally reserved for Ms. Lori, our OT, or whoever is making him do strengthening exercises), “Dada” and “Hey Dad”.  I say mastered, but really, it’s just our interpretation, but I have to say it seems to fairly consistently mean what we think it does.  He can’t say music yet, but he gives us the sign for it ALL THE TIME!  Then the sign that we correctly interpreted is generally a broad smile when we turn on music or sing.
  • Favorites:  “Baby Beluga” “What does the {insert animal} say?”, Daddy, bathtime (can you believe it?!?), being outside, Einstein and Fiona, anyone who smiles at him, “I am a Bunny”, “Brown Bear, Brown Bear”, and pretty much any small book he can  hold and turn the pages and exam table paper…go figure, he sees it enough!
  • As always, thanks for the prayers!  Hugs–

1 Comment

  1. Cami Bremer

    Comments imported from CaringBridge (7 comments):

    So glad to read about Struthers’ great progress! Thanks for the update. Love and prayers from south Georgia!
    —Roya Seymore, October 22, 2015

    Thanks for the update Cami! It was great to see him even for a brief time the other day.
    —Tamsey, October 21, 2015

    Love hearing about this sweet baby’s progress! He looks like he is doing so good and love his precious little smile! Blessings and many prayers for his continued improvement!
    —Janet peacock, October 20, 2015

    Struther’s smile is beautiful and you can just feel his happiness in all his sweet pictures! You all are amazing! Prayers and Love!
    —Susie Short, October 20, 2015

    I would add that his smile muscles are also iff the chart. For all he is going thru, he is such a happy little soul. Bless his heart …as well as yours and Eli’s. Many hugs. Thank you for more in depth update.
    —Catherine, October 19, 2015

    Thank you for the update, Cami! Interesting comparisons: our Jonathan also LOVED and loves music, and is very verbal! Despite some physical challenges, he was on his high school debate team and brought home many ribbons and awards. He was and is also a very happy person. Perhaps they know how wonderful life is!
    —Judith, October 19, 2015

    Thanks for the update. Glad to hear Stru is makig progress. it was good to see him at his baptism. Continuing prayers.
    —Rosalyn Forsyth, October 19, 2015

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