Hoot Hoot!
Happy birthday Miss Getty Owl!
Bear Flag - Yes! Stopping the progression is the most important thing, although gains are great. If she hasn’t declined in the last year, that’s miraculous, right?
StG
You have been truly blessed, Bear Flag. Miss Getty has also been blessed to have the best parents ever.
Bear Flag, she looks smart and happy. You two parents are awesome. Getty is a lovely child. Happy birthday Getty!
Can you tell us how Spiranza is improving her life?
Well, I guess I would start with the background notion that the gist of SMA is the progressive and permanent loss of malnourished motor neurons. Once they’re gone, they’re gone. The push is to get Spinraza started as early as possible to help preserve what’s left. Generally speaking, a Type 1 kid at age 7 months typically has more to save than at age 7 years.
Unfortunately, in 7 years Getty has lost a bunch of motor neurons that she likely could have kept had Spinraza come around sooner. On the flip side, fortunately, she is not among the many thousands who lost EVERYTHING before Spinraza came around. She’s in a class of “older Type 1s.”
She has seen some gains in wrist, foot, arm, and leg movement. This seems to be a recovery of weakened motor neuron function for those neurons not quite lost yet. She has more stamina, endurance, and secretion management skill which helps her attention span for school and means fewer hours in the vent each day. It’s also safer to have fewer vent hours per day because she can better manage her own spit and is now less likely to aspirate or even choke while off vent, plus it’s probably more comfortable to her face to take the mask off a bit longer.
She can also tolerate being braced upright more. This could help with mobility.
The biggest thing seems to be stoping the progressive loss of motor neurons and preserving what’s there. Holding onto the status quo is rewarding enough. It also means holding on to her ability to emote with facial expressions. This helps a lot with communication.
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That’s wonderful!
**Whhhooooo has a birthday tomorrow?? Getty Owl!!
Happy 9th Birthday, precious girl! You are loved!!**
That’s amazing. hoot
!
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That started with 9 hearts, but the hamsters made off with them. Happiest Day, Getty and family!!!
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Happy Birthday!
Happy Birthday, Getty!
Ah, you probably used the actual heart icon. Rebuilt you some:
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<3 <3 <3 <3 <3 <3 <3 <3 <3**
Happy birthday to the beautiful Miss Getty. I appreciate so much that you’ve been sharing her journey with us all this way.
Nine years old! Thanks for all the birthday wishes!
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Happy birthday Getty! She is so big!
Also: that cake! WOW!
hoot! hoot! hoot!
hoot! hoot! hoot!
hoot! hoot! hoot!
great cake!
Awesome cake, and Happy Birthday, Getty.
