Sunday, November 24, 2013

Santa and Bryce Talking!!

What a great day!

And, what a blessing today as we went for our walk to run into the Heritage House, here in our little town, and we met Santa.

  I didn't think we'd see Santa this year because of crowds etc.  There he was, without any lines, or folks waiting. I was very happy to relax, Santa was so kind and was very open to learning how to hold Bryce.

What a nice place!! What a gift!

 Bryce is babbling too so much. Check out this 12 second video below

One of my concerns was his sudden loss of speech in July and months without Steve's nursing team doing the same kinds of exercises and speech therapy. Its concerning that they ignored the medical orders - Physical Therapy is as important as OT and Speech. We don't do traditional PT because its contraindicated for children with SMA, but we keep Bryce active by letting him hold a cell phone, that is considered PT or reaching up high to touch the bunny on his mobile above his bed. Daily play is his therapy. Talking and singing and babbling is the key to extending my son's life.

Speech: Well the Barium Swallow was done when  he had an ear infection and so as most providers know, when a child is sick, its  not really the best assessment of his swallowing capabilities. However the facts remain - speaking and swallowing are the two areas we focus on at this time.  Bryce does have a hard time swallowing pureed food, does better with his sippy cup. Most of his food is via g-tube. Dr. Finanger (Bryce's neurologist) explained to me that when he loses the ability to speak, he loses the ability to swallow well, and that means more suctioning and eventually 24 hours of suctioning to prevent aspiration. (that is with or without a vent)   
For now, Bryce is an amazing strong little man fighting SMA.  He is doing great!! He is talking more and more and the doctors are in awe of his own little milestones.  I am so proud of him.

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