Let me start by saying that since Getty’s diagnosis, fighting for her care has been, dare I say, a challenge. Ideas we have about her care expressed to our doctors were always given a “NO”. Not quite sure they knew why they were saying no, but they did, and they stood behind it.
I am still in awe of the medical profession. It seems as though, at least in our experience, that there are some really good doctors out there, but they seriously seem to be restrained by protocols, liability, and for some, just plain arrogance. I say bravo to any doctor that has the ability to have an open mind and to just listen to people in our situation: parents who just want what is best for our little lady.
But I have got to tell you that hearing no all the time at every turn with just about every milestone of care for Getty was certainly getting taxing. However, since Mark and I are probably two rather overly stubborn individuals, it is impossible for us to even conceive that we won’t get what we want for Getty. Sure it may take time, sure hoops may need to be jumped and repeated, and sure we need to literally, at times, corner a doctor to get them to relent and do the right thing, but if that is what it takes to meet Getty’s needs, then so be it.
So here we are, Getty is 2, she has already beaten the statistical odds with SMA. So what do doctors who don’t know much about SMA do now as they travel with us in uncharted waters? Well, I will tell you, they start to listen.
Today, Getty had her 6 month MDA Clinic at Kaiser and things, for the most part, went really well. The demeanor of her medical team is definitely different now than it was about a year or two ago, for which we are very grateful. Conversations about Getty and SMA used to be doom and gloom, but today it really felt like the conversations were light and positive.
Getty’s health is great. Her weight and diet are optimal, and we are very happy with the AA Diet. We have seen nothing but great results from it. Again, we could not have even comprehended this kind of achievement for Getty if it weren’t for some awesome SMA mommies, families, and caregivers.
We did an EKG on Getty’s heart just to see a baseline. All is good.
Her bipap settings are good, and we had a great conversation with our pulmonologist about getting a back-up cough assist machine and bipap. We currently do not have back-ups for either.
Our biggest fear is that her current cough assist stops working during a mucous plug or airway blockage. If that happens, as it does with SMA, then we will really be in an emergency situation to clear her airway.
Apria, our medical equipment vendor, would bring out a replacement, but their turnaround time is an hour to two, which would not help rescue her in the least. If we call an ambulance, they do not even carry a cough assist on their truck. We would like to have some security at home knowing that if something were to happen, we would have back-up.
Having said that, we have already received a denial from Kaiser. We knew that was coming, BUT today our pulmo was on board to help fight for us during the appeal process. No other doctor has previously offered us any advocacy against the insurance bean counters in all the time we have been working with these professionals. I had to catch my breath.
Will it be approved during the appeal process? Not sure, but it certainly doesn’t hurt to have your pulmo fight for your child along side us. If Kaiser does not “pick them up” there may be other avenues, but it sure would be nice to have Kaiser pick this up. So stay tuned.
Another topic of our appointments today was the discussion of a power chair. Getty is ready to rock and roll on her own. We have started the discussion. We are starting to get the momentum in the direction of a power chair trial and then we will be finding a funding source. That is very exciting, to say the least.
Mark and I do have one concern, though. We both have this image of Getty set up in her power chair and she just takes off down the road, maybe even hitting the highway just because she can. She is such a free spirit, we know once she has the keys to her “car” there will be no stopping her, and rightly so. 🙂
Lastly, and I would argue most importantly, is a communication device. Getty is what you would consider non-verbal at this point. She is very loud vocally, so our hope is that with time perhaps her speech therapist and I can help her enunciate her sounds into words. So we will see. Mark and I understand her needs for sure, but if we could add some more vocab into her repertoire, the better. In comes the Tobii Communication System. We are still learning the ins and outs, but what the system does is calibrate to Getty’s eyes and, from there, she can navigate the computer using only her eyes.
We were given a free two week trial by the local rep and we have been trying to squeeze every ounce of the time we could on Tobii (1) without burning Getty out; and (2) while keeping it a pleasurable experience for her.
We want to challenge her on video so we have evidence that a 26 month old can access the machine. So Mark and I have been videoing anything and everything we could, just to have evidence that she is, “rockin’ it”.
We received the system on Monday of last week. Calibrating was not an issue. I think more of the issue for Getty figuring out what the heck it was and also realizing that mom and dad did not have to help at all if she didn’t want us to.
In true Getty form, she didn’t need our help. She has enjoyed her mom and dad staying in the cheering section. For these two weeks, we just want her to have a good time.
I have a video to share of our little lady playing a memory game. A little background is that, at first, when she would go into this memory game program, she would immediately exit out. I think, at first sight, it didn’t look like a fun place for her to be. The scene was not as vibrant as others. She did not realize that the there were images on the other side of the blank white cards.
For two days she go into the program and then exit right out. By the third day, she had realized that there were images behind the cards, that there were two of each image, and when she found those matching two they would disappear from the screen.
Do you see how incredibly smart our SMA kids are? When they say SMA does not impair the brain, not only are they not joking, but in all actuality, our kids are brilliant. 🙂
We showed this video to all of the doctors today, and they pretty much remarked with everything positive but “damn that is awesome.” I think we heard, “Holy cow,” “amazing,” “wow,” and “she did this in how many minutes?”
We are very proud of our little lady.
Kaiser will not cover this Tobii Eye Gaze system. Their belief is that a child cannot access this kind of system until the age of 5. Um………okay.
A couple of county resources are working with us to hopefully get this system. It comes with a heavy price tag of course, like all things, but we hope to have this in her little hands sooner than later.
The Tobii ATI has opened Getty to a world that Mark and I can only dream of for her. She deserves it and we will get it one way or another, and so the fight begins. I know we will all be sad to see it go this Friday when the rep takes it away. 🙁
So here is Getty playing her memory game. She completes the game in about 4 minutes. BAM!