Mark and I for the most part need to keep Getty on a pretty rigid schedule or routine, however you call it. Give or take a half an hour here or there, but for the most part we are bound by treatments, feeds, and therapies that keep us in line for most of the day.
However, Getty and I have started a very fun mommy & Getty routine right after we wake from our nap that has fit perfectly between her next breathing treatment. We spoon in bed and watch The Jungle Book.
Originally she was not a fan of the story. Kaa the snake was a bit scary weird I think. His voice did make her giggle, but I don’t think she appreciated the way he treated, or rather tried to eat Mowgli a couple of times.
Getty loves the songs in the movie. Great beats and easy to move her arms to while we dance. Our favorite is Bare Necessities. Baloo teaching Mowgli to just relax, chill out and not work too hard. A good lesson for us all.
I love this time with her. It is just her and I in her dark jungle cave.
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!
Over the weekend we had the pleasure of spending some time with Hayden and her parents and her grandparents. It was an amazing time.
The entire week building up to our departure on Friday was one of terror, too be honest. What if Getty desats? What if we forget something? What if I am not able to get over my extreme anxiety and I can’t even relax? What if the car breaks down? What if the battery inverter that we depend on in the van stops working? What if we get into an accident? What if Getty gets sick? What if she gets a plug while traveling, perhaps a bump on the freeway knocks something loose in her lungs and we need to resuscitate her in route? What if, what if, what if?
Well I am here to tell you that NONE of those things happened. Getty slept the entire way to their house. Even Cooper enjoyed snoozing on my lap during the trip. Mark did a wonderful job of driving the ship and I even got a chance to read a book? I am still shaking my head in disbelief.
I can tell you that there is something very special about spending time with any SMA family. There is an immediate connection that really cannot be described, just felt. We share some very deep emotions that we have all felt but don’t need to even talk about, if that makes sense. I have nothing to compare it to because I have never felt tragedy, love, understanding, determination, and compassion since SMA came into my life. So it is kind of an unspoken feeling and respect for one another that I think makes our families bond the way we do.
So when you can physically meet each other, it makes it that much more complete. Jennifer and Chris, I hope you don’t mind me saying this, but I am convinced that you are by far the best hosts in the universe. 🙂 Our coffee cups never went dry. That in itself wins you 5 stars. 🙂 But in all honesty you gave all four of us (Cooper included) a chance to just relax. We haven’t had that since, seriously, back when we went to Monterrey over a year ago. We felt like we were in loving hands all weekend and we cannot thank you enough for that. So thank you.
So Miss Getty and Princess Hayden got to spend some great time together. We had the girls laying next to each other as much as we could. They had a great time watching some shows together. Hayden has a favorite show called Wonder Pets. We have since watched that show at home and I think Getty is starting to take to it. Hayden is a princess through and through and we feel like Getty is a princess in training but certainly got some good tips from Hayden. Her bedroom is just magical.
Spending time together all weekend and getting to know each other more was really rewarding for us. I know since we have been home, Getty is a lot more verbal with us. She is starting to use her eye brows to let us know that she likes something and doesn’t. Isn’t that funny, I have been trying to work on that with her for over a month, yet she spends a weekend with Hayden and absorbs it immediately, kids!
There were several moments that I had to stop and really observe Getty watching Hayden. I could just tell she was in awe of her and how she communicated with her parents. There were several times that they talked to each other and Mark and I joked about what they must be talking about. Plotting about something. 🙂
It was an amazing three days, no doubt about it. Thank you Hayden’s grandparents. We enjoyed getting know all of you as well. Shelley you make a mean brunch. Thank you.
It is one thing to meet SMA parents online to gain and offer support, but it is a whole new experience to meet families in person. This past weekend kind of filled Mark and I up with even more hope and comfort that we are not alone in our fight for our kids.
So thank you Calafiore Family. Hope to see you soon. Chris, Cooper already misses you. He is starting to demand that same amount of snacks you spoiled him with. 🙂
Here are a few pictures of our lovely ladies.
Another SMA Mom mentioned a while back about a blog called This Little Miggy Stayed Home. Thank you Erin. 🙂
Miggy writes about her family, her two beautiful girls, art, and “anything that strikes her fancy.” Her Friday posts are dedicated to spotlighting children with special needs. I thought this would be a positive way to introduce her readers to Miss Getty, show some light on SMA, and give a mom perspective on loving a child with special needs. I emailed her and she was gracious enough to interview me and select Getty as one of her February “Spotlights”. My biggest regret is that I was not able to post this earlier. Miggy my apologies.
I hope after reading the interview you continue to follow her blog and to check out all of the incredible kids and their families that have graced her Friday Spotlight.
Here is the interview.
I want to thank Miggy for the interview. There were some questions that I personally had not asked myself yet on this journey and I appreciate her ability to pull some thoughts and feelings that I think I have been sweeping under the rug.
I would encourage anyone that has a special needs child to contact her to perhaps obtain an interview, so your child can get a Friday Spotlight. She was very personable and I enjoyed working with her.
Thank you again Miggy.
Before we moved, Mark and I put together some non-negotiables of what we needed in a house.Here was our list.
2. 2 Bathrooms
Our old house was almost getting dangerous for Getty. The hallways and bedrooms were very narrow and getting Getty in and out of the bathroom started to become a hazard.
We came across this house in a neighboring city and just fell in love with it immediately. It covered all the items of our list perfectly. What we didn’t realize was that there were some added features to the house and to the neighborhood that made moving even more awesome.
The kitchen and dining room are kind of one and so there is tons of space for what we call Getty’s Art Corner. She has space to have a easel and a bookshelf for her books. paints and markers, etc. It is also big enough so we can have her PVC pipe gym to hold her arm slings so she can rock and roll on activities.
We try to get her up in the arm slings at lest once a day. Today she was using her markers to draw a beautiful picture.
I captured as much as a could. She is laying on her 8′ wedge in her arms slings with a marker. There is also a amplifier next to her with the mic near her mouth. We are trying to encourage her to talk more and the thinking is if she can hear herself that might encourage her to talk more.One more thing. I don’t know if this is a two year old thing, but when she sees that I am watching her do different projects she gets a little sassy, as if to say, “Mooooooooooom, stop watching!” I love it.
While we were moving into the new place, we started to realize all of the great perks in the neighborhood. 1st and foremost, there is a Target about a quarter of a mile away. Dangerous! But most importantly there is a school two blocks away. The school Getty will be going to when Pre-school comes to call. Our neighborhood also has a cool duck pond. We have hung out there many times to feed the ducks. One night Grammy and Papa came with us and we all had a great time. Some of the geese were a little more aggressive than others, but all in all I think everyone got fed. The first time we went, Getty was super quiet. We can only imagine how much she was taking everything in. And as we began to go more often, she started to chat more.