YEAH for the Bearflag clan! Now maybe you all can get some much-needed rest.
Woo hoo!
Thank God!
Bearflag, I would have killed all the incompetent assholes who have been mishandling her treatment. That you didn’t is amazing. Beautiful advocacy and self-control.
It really really sucks when you have a medical problem that is so non-standard that the standard simply Does Not Work. Convincing medical people of this is a huge PITA. SMA is, sadly, more common than my ortho condition. And don’t get me started on that.
I’ve been following the blog and am incredibly pleased at how well you have been handling the whole situation. Well done! And your little owl is one amazing girl; I only wish I could offer you guys hugs in person. Hats off to all three of you!
Like!
I gave an audible sigh of relief (which made my husband give me a raised eyebrow from across the room) when I saw you’re all home safe. I’m so glad she’s back in her happy owl stomping grounds.
I’ve been following the blog and all I have to say is I’m glad that Getty is now at home and I think you and Kate are the most amazing, toughest, resourceful, loving people I’ve read about in a long time.
Thank you. That is so nice to read. 
Honestly, I have been sensitive to the notion that maybe we are overbearing and unreasonable. I kept telling Kaiser nurses, RTs, and managers that we know there are crazy parents out there who make unreasonable demands and think they know everything. We don’t want to be *those *parents. I try to reassure myself that we aren’t *those *parents, and the Kaiser staff reassured me that, although we insist on a high level of care, they don’t see us as *those *parents.
Essentially, Getty has a hidden “kill switch.” Anyone handling her can unknowingly trigger it and find themselves in a situation of having mere seconds to fix her while failing to understand the cause and failing to understand the best method to fix the problem.
Hell yes, we are going to be on high alert at all times. We are going to watch over her like a hawk, even if the care provider thinks we are “breathing down their necks.” We are going to insist on being hands-on with her care. We are not going to be very trusting of people who may “forget” how to handle her, especially n00bs, and especially those who demonstrate inattentiveness and/or a lack of knowledge in any manner. This is especially important because Getty’s needs are contrary to standard protocols, to which care providers may resort instinctively to Getty’s detriment.
Further, when the RT manager tried to bar our hands-on care, all the nurses banded together and supported us in our fight. All the RTs who provided hands on care told us they had no problem with us or our desire to provide hands-on care. The Kaiser managers and administrators ultimately found our requests to be reasonable and apologetically restored our rights to provide hands-on care.
I am probably just arguing with my subconscious here, but it’s good to get it out there. It’s good to get feedback. Thanks!
Even if you were, which it truly doesn’t sound like, that’s your job as Getty’s protectors. Be grateful that you have the fortitude to be overbearing or unreasonable if that’s what it takes to protect her.
you and kate are living with sma all day every day. you are the experts in getty care. it is not overbearing or unreasonable to do all you can to have your daughter alive and as well as she can be.
it is logical and reasonable to listen to and follow the requests of getty’s experts when you are dealing with a child that has a condition that is not presented daily.
those that were able to work with you and learn from you, are those that are very interested in doing the best for the lives in their care and expanding their knowledge.
there will always be people that are narrow in their outlook and will only do things this way, because that is always the way it is done. no need to try different approaches, this is what the protocol is and that is that.
that approach may work for an ingrown toenail… when it is a little girl’s life, move them aside and deal with the fall out later. which is what you did, and rightly so. i know that doubts will crop up (did i?,should i?), but there is no doubt, none at all, that getty’s well being is always, always, first in what ever y’all do or ask of those around you.
and that is and always will be the correct course. that y’all make good and right decisions for getty, and that she is and always will be a joy and delight for y’all.
This. I agree wholeheartedly. Bless you and bless your family.
I agree. Owlet’s well-being first. manners second.
Hey Dopers,
Getty is doing well after catching a cold and spending about 2 weeks in the PICU. She’s pretty much back to her baseline and things are moving along. She has been accepted to Shriner’s Hospital to get some orthopedic care that’s not covered by our insurance. We hope to get her in a mechanical stander so we can stand her upright. This aids digestion but more importantly, helps increase bone density. She has thin bones due to lack of weight bearing, but we knew that was coming, so now we need to address it as the “next battle.”
Also, in case you don’t know, AUGUST is SMA Awareness Month!
So spread the word about SMA. We have an awareness campaign going on called “Tell 5.” We’ll send you materials to help you tell 5 people about SMA. We encourage you to write us back with your stories.
Also, our city of Sacramento, CA has officially recognized August as SMA Awareness Month!
Further, we just landed an article in the Sacramento Bee.
In the words of Bartles & Jaymes, thank you for your support!
Great article. You are a fantastic family.
Thank you for bravely sharing your story with the world. It was very moving. My very best wishes to your little one and your entire family.
Bearflag, I’ve been thinking for awhile about posting about SMA on my FB, but haven’t known exactly what to say … I have some ideas, tho. May PM you about some of them!
Sorry to hear that the little owl caught a cold, but glad to hear she’s feeling better. 
I knew next to nothing about SMA before this thread came along, and it’s really been eye-opening. I would also be happy to post something on FB to help raise awareness.
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Sara,** there’s so many Dopers on FB, maybe if we create a SMA meme, it’ll really take off!
janis, I decided to do the same thing. It seems my FF are big into asking us to post things about love of our children, our faith, our country in facebook to show our loyalty. The least I can do in return for reading their posts is give them an educational one about SMA.
If anyone has any ideas, questions, etc., please feel free to share. I have no problem sharing when it comes to SMA, either about SMA itself or life in an SMA family. Ask here, email, or PM me, whatever works for you. If you email me, please use