Getty Owl Foundation

Baby Steps with Dad

From Mark:

Today was shaping up to be just another Saturday. Mom was out of town in an effort to destroy SMA with some other SMA warriors. I was home, having some coffee and making Getty’s food for the day.

It dawned on me that it was Father’s Day weekend. Then I thought I would love to do something special — just Daddy and Getty. I instantly decided Getty and I were going to go have lunch out on the town.

It may not seem like a big deal, but since Getty lost her swallow function, about two years ago to this day, Kate and I have NEVER taken Getty out with only ONE adult present because (1) Getty has a bunch of unwieldy equipment; and (2) Getty can find herself with an instant airway obstruction thanks to SMA taking her swallow and cough functions.

I was reluctant to take Getty out alone. I reminded myself that I know the drill and I can handle it.

Getty and I took off for lunch! I was a bit nervous in the van with Kate absent from the back seat, but it wasn’t too bad. I picked The Streets of London Pub mainly because  it’s one of the closest places to home should I need to return in a hurry.

Getty and I had a fabulous lunch and enjoyed some great father-daughter time together. Our server was nice. I told our server we were out for Father’s Day and she was delighted.

After quietly singing a couple of Getty’s favorite tunes, she spotted the soccer game on the TV across the room. Suddenly, she wasn’t so interested in Daddy anymore. Oh well, it was still a good time.

I had discreetly hidden her G-tube, feeding pump, and feeding bag. I wonder if our server thought it odd that I ordered no food for Getty and ate the whole meal myself without offering Getty so much as a crumb.

In all, we had a great time out and about. Going out alone was a new experience that will hopefully lead to more opportunities for Getty to see the world. What began as a ho-hum Saturday turned into a day I will always cherish. I loved sharing these baby steps with my little girl.

Here we are at Streets in West Sacramento, California. Yes, our first trip out as a pair was to a pub — not the zoo, toy store, or a park.

PS: I put her on bipap (the nose mask in the photo) because it provides filtered air to help prevent germs and also helps her blow her own spit out so it’s less likely to get down her throat.

Recon Run? Oh For Heaven’s Sake!

From Kate:

This past April some incredible SMA mommies ran in a mud run to which I was not able to participate in. Our Getty Owl Run/Walk, moving, settling in, and finding Getty a new routine kind of left my tank on empty. I thought for sure if I participated I would end up stuck face down in the mud left to suffocate.

The Mud Run was a huge success for them. Money was raised, bonds were made and I could tell that there was an amazing sense of accomplishment they all felt about completing such a  physically challenging run. Add to that to  have so many SMA mommies together in one place at the same time is so hard to do. I was jealous, I’ll be honest.

So the same SMA mommy (Crazy Meri) nudged us all to do another mud like race. The Recon Run this June 16th, is less than a week away, taking place in Tracy. I’ll just say a few things about this “event”. I peeked at the map and when I saw the 12ft wall we need to scale over and the barbed wire to go under? Who does that? Well I decided I would no longer look at the map. It is was it is and I am in! I get to participate with some incredible SMA mommies (Meri and Jen). Takoa and Morgan, friends and board members will be flanking both sides of me to make sure I remain upright. Miss Angie, who helps me take care of Getty and her friend Iris will be there in support as well.Well over 20 of us in race shirts and bandanas.

I am not sure what to expect but all I know is that I am in good company. I look forward to running alongside my fellow SMA mommies. I can only imagine the kind of adrenaline that goes through one’s body to complete this kind of event. I am nervous but also looking forward to it. I can’t wait to get all of my SMA frustrations out into something productive like scaling a wall, soldiering through mud, and pretty much being yelled at by a drill sargent. I feel like I need this kind of extreme torture to prove something? Not sure what yet, but I think it must be something SMA related.

As I write in my comfy chair and my clean clothes I guess I would say right now this race will symbolize my journey so far with SMA. I hate it and I want to beat the crap out of it. So every challenge on that route on Saturday will be another slice of what SMA means to me.

Now Saturday will be another story, I might turn into a mouse and run away and hide in my car. 🙂  But my hope and my goal is to push through every challenge with strength and dignity. Another hope is that afterwards I feel a strong sense of accomplishment. Lastly, I hope the beer that they promise to have at the end of the race is super cold and refreshing or someone will pay dearly.:)

We are raising money for Getty Owl Foundation for this the Recon Run. If you feel compelled to donate to this crazy mother, I thank you in advance. I would like to thank SMA Mommy, Heather Scanlon for raising an absurd amount of money for Getty Owl Foundation already. Unfortunately, she just found out that she will not be able to join us this Saturday. Girl you will be missed but with us in spirit! Thank you for working so hard to raise money. We really appreciate it.

Updated post to come soon.

Our Bathing Beauty!

From Kate:

Last year around this time, the weather was absolutely gorgeous, like it is now. I was inspired by seeing so many SMA kiddos enjoying swimming with their families and really soaking up the sun and honestly taking advantage of the summer weather.

RSV Season is technically “over” after Memorial Day Weekend and from that time on it feels like a race to get in as much sun, activities, seeing family, experiencing life and slobbery dogs you can until October starts to rear its ugly head.

Although as a mother I have begun to make some concessions about Getty’s exposure during  next year’s RSV season, it will still be crazy to most people and it will indeed contain the incredibly insane cleaning protocols that have been instilled in our home and exposure to others.

Okay so going back to last year. I was fascinated by this particular pool. It was one of those soft pool contraptions that could be set up and taken down “easily”. I have those, “Getty should have this”, moments and we found one and I put the darn thing together that night. I was getting eaten alive by mosquitoes, but they were no match for my quest to get Getty into that pool.

Water was added that night and the idea was that by like two days it would be fit to jump in and experience our summer, poolside. On the first day of waiting for the water to get just right, we had Getty in her stroller in the backyard and some thing strange started to happen. Her heart rate began to elevate into the 140’s. Didn’t think much of it. Her O2 levels were fine and she did not seem uncomfortable. Then as I started to walk her around the backyard, her heart rate started to kind of spike into the 160’s and 170’s.

Getty had never been sick before. This roller coaster of HR numbers had us worried but not like crazy worried. We took her inside and tried a couple of things to see if the numbers would decrease. They didn’t and that night was our first indication that something was not quite right. She had been teething for the past couple of weeks big time and so we truly chalked it up to pain. Back and forth we went from Mortin to Tylenol and while it did drop it down some, something was just not right. Since Getty’s diagnosis I think Mark and I were just so sensitive to watching her O2 levels that the HR was one of those things that could be several different ailments or remedies, all we could not render.

Then two days later we were in the PICU and there we stayed for two weeks. Getty gallantly fought off her illness. Mark and I almost killed a few employees and I think we managed to get about 10 hours of sleep between the two of us. And all the while our pool remand in place, heating with every summer day.

So fast forward to yesterday. I decided to lower my standards. Did we really need a gigantic pool? Where on earth would this thing go anyway? And in a really weird way I did not want to sabotage Getty’s great health with the same pool. I guess you could call me a little superstitious.

So Mark ran to our neighborhood Lowes and he bought a cheap kiddie pool.

Added water to it and our backyard turned into a Hawaiian paradise for Getty.

Getty’s makeshift bikini, she grew out of last years. 🙂

Hi beauty.

Hanging out poolside.

Trying to figure out if she likes it or not.

Look who’s swimming!

Post swim snuggles

We had a wonderful time yesterday. Getty got a chance to experience something new and she truly enjoyed it. It was awesome to watch her move her arms and her legs and to do it all by herself. The water was a bit cooler than her bath time and so there were some seconds of surprise on her face. Then I think she realized that it wasn’t a bath and she was very happy. I asked her today if she would like to go swimming again and she gave me her intense look, which is code for “duh Mom.”

Mark, Cooper and I were able to also hang out poolside and enjoy the remains of the day, together as a family. It gave us a chance to kind of reflect on how far we have all come as a family since last year. Cooper still tried to eat our dinner, so he did not learn anything. 🙂 But it did give us pause to reflect on Getty’s continuing good health. SMA has a way of changing a person. Good or otherwise, one thing is for sure, we are all still here together and we are just so thankful to have our little mermaid with us.

She continues to flourish and with that, continues to inspire us to keep on, keeping on.

Well time to fill the pool up again for tonight. Hope everyone had a great weekend.

Some Bare Nessesities

From Kate:

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.

My Tobii, Getty’s World is Opening Up

From Kate:

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!