It’s been a while since we’ve updated the blog so we thought it might be a good time to pass on some updates on Emma’s progress. We’re still awaiting the data gathered at the SMA Clinic at Seattle Children’s Hospital in mid-January… we’ll pass it along when it arrives.
You may remember that she completed her Spinraza loading doses on December 28 and is scheduled to have her first maintenance dose in mid-April. That first maintenance dose is rumored to result in even more significant improvement.
But in the meantime… something’s going on with Miss Emma.
It may be Great-grandma Tess or Grandpa Doug watching over her from above. Or it may be all the prayers, good wishes, thoughtful acts and incredible love and support Emma and her family have received from everyone…
But whatever it is, something incredible is happening here.
Watch and enjoy this day in the life of Emma!
Hey! I’m awake!
Good morning everyone!
Off to the pool.
At aqua therapy, getting ready to ROLL!
The pacifier is necessary to prevent SOMEONE from licking up all the water in the pool.
And away she goes… Watch this video and see what happens with the instructor says, “Are you ready?”.
Ready, set, GO!
Emma is putting more and more weight on her legs in the pool!
Well THAT was fun!
Time for a walk
It’s really cold! It must be below 50 degrees!
Lunch at Grandma Kathy’s
Feeding system hanging on Grandpa’s reading lamp!
Hanging with Robyn’s cat, Milo
Both watching Harry the Bunny on Baby’s First Friends TV.
Reading time.
Would you like me to read to you?
Time to go to work
Emma grabs her toys, bounces a bit and bangs things around. She can keep it up for 15 minutes or so.
Relaxin’
Sitting on Mom & Dad’s bed. Emma can sit on her own now for longer and longer times.
Notice Joy the Killer Cat watching over Emma?
Sitting in her chair, waiting for dinner
Getting ready for bedtime…
Reading to Dad after the bath.
Drifting off the best way… on Mom with her giraffe BI-PAP. Binky’s popped out!
As you can see, Emma’s a busy little girl. Her first birthday is coming up this month and we’re all looking forward to even more smiles, giggles and the odd “HEY!” yelled from her crib.
Thanks again for all the love!
EmmaStrong2017 
Emma, you are such a busy little girl and doing amazing! Loved how those little legs were kicking in the video 🙂
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So much to journey through, to make this progress possible. Thank for your sharing a beautiful dairy-for-a-day from Emma!
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