Happy Birthday Getty!
Happy birthday little owl, enjoy being 3!
Hey there! Thanks for all the birthday wishes! Sorry I didn’t see them sooner. I very much appreciate them and I am so happy that Getty is 3.
She’s doing well, she has all the basic medical equipment and supplies she needs, we are well versed in SMA, and we have won pretty much all our battles to date with medical providers. Her daily care takes a lot of time and energy, but at least the basics are routine at this point. The learning curve isn’t so steep these days.
Spring is here, and RSV season is over. We look forward to getting out and about more before next November.
I had the local fire dept. come out to meet Getty and look at our set up so they will know what to do if they ever need to come here.
We are working on getting Getty involved in preschool. She has a communication computer, is training on using a power chair demo, and has local support services in place. One thing we are looking into is a remote control robot Getty could use to actually attend and interact with a classroom from home. There’s a learning curve with all that, but it’s not nearly as stressful as learning basic life support and nutrition.
Her doctors are constantly amazed at how well she is doing and how good she looks. She’s happy, vibrant, vocal, healthy, smart, and she has damn near perfect nutritional labs all the time.
She’s an absolute joy to be around, and we love to hear he squeal, laugh, and hoot. It’s a stressful, tiring, and difficult road, but when we lay in bed and I hold her little hand as she drifts off to sleep, I am able to stop and appreciate how thankful I am that she is part of our lives and how I would go to the ends of the earth so see that she is happy and healthy.
I love that she has helped raise SMA awareness, that we are able to help the SMA community in ways the community has helped us, that people around the world love her and have supported our family and foundation.
Thank you Dopers for being there from the start and for the birthday wishes! You all have a special place in my heart.
Wow, a robot and a communication computer? That’s really interesting. You should do a blog post about how that stuff will work for her. I hope that it helps her interact with her environment better.
Glad that she seems to be doing so well. 
The robot
that robot is fantastic! what a help that will be during rsv season. i’m sure she will charm her classmates and teachers as she charms us all.
That is way cool.
Bearflag, not only are you blessed to have Getty in your life, she is also blessed with two amazing parents. We don’t always know how we affect others. You are an inspiration to all of us who bitch and whine about the little stuff when we should be expressing gratitude for what we do have. Thank you for all that you do.
Thanks… I’m just doing what a dad needs to do for his girl.
And I spoke a little soon on having all the basic equipment. A new version of one piece of equipment was recently released, but we were denied our request for it even though we think it has very important new features. Fighting another appeal now. Sigh.
Actually, someone earlier was asking about lack of medical knowledge or support. This is a(nother) perfect example.
We have one piece of equipment that is critical. Well, a newer model just came out with important features the current one lacks.
My wife and I knew the new machine was being rolled out by the manufacturer. We knew its design and capabilities. We were anticipating its release knowing how it could help us.
Well, we were the ones who informed our pediatric Pulmonologist about it. WE TOLD HER the features and how it could help.
Then she said she would look into it and help us get it. Time goes by. Nothing. Now and then she gives us the vague “I’m working on it.” Then she says the medical supply company is lagging on getting it in their inventory.
We send an inquiry out to the SMA community asking whether those using the same supplier have gotten their hands on the device. Yes, some have. So it’s either a local problem or she’s full of it. She says it’s any delay supplier problem, not a Kaiser problem.
More time goes by. Nothing.
Frustrated, my wife calls the supplier directly and works her way through to someone knowledgeable. He says he can get the device and all he needs is an Rx from Kaiser.
BOOM! Instantly email Kaiser. Pulmo writes the script. How hard was that?!
A few days later, Kaiser calls and tells us they are denying the machine. So much for it not being a Kaiser problem, right?
We instantly demand a denial letter so we can start the appeal. I already have a 10 page letter of medical necessity written up with citations to medical journals and to the product catalog to justify the machine.
This is typical bureaucratic BS that sadly happens ALL THE TIME. It robs stressed out families in critical care situations of their quality if life and takes time and energy away from their kids, who have a short life expectancy as it is.
So when we say we help newly diagnosed families, this is the kind of wok we do for them behind the scenes. A big part of it is convincing them that their doctors are often wrong, do NOT know SMA protocols, and they will have to FIGHT to get what they need for their kids. We help them get up the nerve to challenge medical professionals, give them the education, arguments, and literature they need, and put them in touch with other families who have fought that same battle before.
I can’t imagine how difficult this is, and how often you want to say “I told you so” to the doctors and insurance company. I’m glad you are willing and able to take on these fights.
We emerged victorious after yet another battle with Kaiser and Apria. Hooray! We got the new equipment yesterday, and it’s a wonderful machine.
Yay. You are the go-to people for making insurance miracles happen. Go Getty!
Thanks. I just wish they would come to understand that when we ask fir something, we ask for shit we need and don’t ask for shit we don’t need.
Man, I can’t even imagine the time and energy it must take to jump through those hoops. Good for you for helping other families navigate the same journey!
I was surfing around today and found this story on cnet: “Dad hacks wheelchair to let two-year-old explore world” Page Not Found (404) - CNET
His son has SMA, and I immediately thought of this thread and Getty.
Go Alejandro! That’s terrific.
Hey, sorry for the delay. I haven’t been around much lately.
Yes, that article made the rounds in the SMA community and it’s a wonderful story, except the part that the ingenuity was necessitated by an insurance denial.
Our Type 1 kids often get strollers and then, if the kid is thankfully healthy and capable enough later on to operate a power chair and exceeds life expectancy, Insurance says, “No. We got you a stroller 2 years ago when your docs convinced you your child wouldn’t live this long, and wouldn’t be capable of a damn thing if even if she did, remember?”
I do wish I could hack my own chair, because Getty is getting ready for one but Kaiser is setting her up for a denial with their crap ideas on pediatric power chairs and total lack of consideration for the nuances of SMA 1.
Cookie cutter policies are cutting her opportunities for independent mobility.
Situation normal. You already know the ropes you will have to cut to make this happen.
It can’t be easy to find a secondhand chair. If we can help, let us know.