Getty Owl Foundation

An Absolutely Perfect Saturday!

From Kate:

It is easy to feel isolated with SMA. We don’t have SMA families as neighbors. You can’t just go somewhere to be surrounded by SMA families who offer their comfort and support. Most days are just so draining and overwhelming, there is little time or energy for outreach. Yes, SMA affects 1 in 6,000 children, but reaching out to and being with those families is very difficult.

SMA is different for all children. Obviously there are constants, but it still is the type of disease that is not cookie cutter. It affects families differently. SMA has a wide spectrum: we have met families who have lost their children very early, those who are transitioning their teenager into college, adults with SMA, and everywhere in between.

Most correspondence is through Facebook or SMASpace. Both places give us a way to meet the greater community, lend support, and exchange ideas on best practices. Virtual connection is fairly easy, but physical connection, which is very important, is very difficult.

We have been trying to plan a time to get together with a fellow SMA family not too far from us. Since a winter meet up season is likely out of the question, finding the best time to see each other while we are all planning our own family trips makes for difficult planning. Other potential set backs, like a high heart rate, low oxygen saturation, or just anything being not quite right, cancels the whole idea of meeting up.  To find a day to meet up, the conditions need to be just right. Yesterday was that day.

Getty had not seen Aaron and his parents for an entire year. In the van, we were reflecting on a year ago and we were just in awe of how things have changed. Not in a sad way, just taking inventory of what has changed.

I gasped at the thought that we had no suction machine a year ago.  The thought of not having that by our side 24/7 now … my goodness! Pretty much every other machine that helps Getty breathe, eat, and thrive was not a part of the equation a year ago. I remember very clearly being scared out of mind a year ago today. That is putting it lightly. I was terrified and grieving like I never knew a human being could grieve. I can see that so clearly, and in hindsight, wow that was horrific. A year ago, I was convinced that Getty wasn’t going to be with us very much longer — that was until we physically met the Phelps Family.

Just like the first day we met, we pulled into their driveway. I felt like I was home. The moment we met all three of them, I knew we were going to be okay. I knew Getty was going to be okay. I knew that our journey would be a long one, with Getty by our side. Meeting Aaron convinced me that Getty was going to be just fine. He is such a beautiful boy who is wise beyond his years and cared for by such diligent and thoughtful parents. He is such an intelligent kiddo who is also very silly, expressive, and dare I say, a flirt. 🙂

This Saturday would be extra special.  Miss Hayden and her parents were coming up from Madera to visit. What an absolute treat to have three SMA families all in the same house.

For lots of reasons, it is very difficult for us to have Getty around other kids. We were so excited for Getty to be have the opportunity to hang out with her peeps. Introductions began and Getty got to see Aaron after a full year. He is such a gentleman, and Getty is now such a little lady. My how much a year changes! They aren’t babies anymore.

Getty also got to meet Hayden. It was so breathtaking to watch Getty’s expressions. It was a lot to take in. She usually only sees Mark, Grammy, Miss Angie, and me on a regular basis. Now she is surrounded by so many new faces, but she took it in stride.

She really enjoyed spending time with Hayden and Aaron. Getty was so chatty and in good spirits while they hung out. I wish I knew what she was saying. I know she was happy, so maybe she was just making chit chat. Maybe she was telling the kids how hovering I am with her. 🙂 Yep guilty.

There is an unspeakable comfort when we spend any time with another SMA family. I wish I could explain what it is like. It is a comfort, it is an understanding, it is a common respect for each other and our kids, it is an immediate admiration for one another. It is almost like we are soldiers, fighting the same battle, when we get a day of leave to meet up and rejoice in the moment.

The weather was perfect, the atmosphere was perfect, the company was perfect, and memories were made, which makes for an absolutely perfect Saturday. Thank you Phelps Family for your wonderful hospitality and thanks to the gracious Calafiore Family for stopping in while on your big weekend trip. We are so inspired by all of you.

A Little Bit of Housekeeping

From Kate:

The outpouring of support of the Getty Owl Foundation website has been so incredible. Thanks to everyone who gave us a virtual high five in the past few weeks. But too be honest, change is not easy. We knew going forward and creating our foundation website was the next step, the right step. But even we were a bit nervous with this change.

In the days following the changeover, when I would write a post, It didn’t feel like home. I missed the old blog, to be honest. But I know that will come with time.

One thing that I was hoping was not going to change was the fact that everyone that had once subscribed to our blog in the past with our .com address no longer has their subscription still. All I can say is I am sorry. We were really hoping to make a smooth transition from .com to .org but it didn’t work. 🙁

So having said that, if you would like to subscribe, which we would love to have you come aboard once again. We will NOT be changing the web address EVER again. So you can have comfort that your subscription will be fine from here on out. And now that I think about it, this all sounds familiar, like I had proclaimed this before. Well this time it will work. 🙂

If you go to the bottom right side of our website there is a heading called: Getty Owl Subscription, it asks for your email address and then you are automatically a subscriber.

Thank you for reading, thank you for participating, and our hope from the moment we started this blog was to help educate the public about SMA and to introduce you to the love of our life, Miss Getty. And our journey continues………………….

The Wonky Donkey

From Kate:

We have some very special friends in New Zealand. We met them around this time last year. We are both families affected by SMA. Obviously not the way we wanted to meet, but it is what it is and we are better people for it. Getty and Holly were fast friends. 🙂 Getty received a very sweet gift from our Kiwi friends a while back. The book is called, The Wonky Donkey. It is a very cute story about a Donkey. The story also has a song version of it as well.

When we received the gift back in the winter we read it to Getty and her response was confusion. She really wasn’t interested to be honest. We had heard how much Holly liked it and we thought, well of course Getty will as well.  Um…….nope!

During book time every night I would sneak it in and still she would not be interested. What was it about this donkey? Then we played the song. It became very clear to us that it was us, we were the one’s boring her to new heights. It was our tone and the way we didn’t make it rhyme that made her disinterested. Oops! 🙂

The first time we played the song she was hooked. We could tell Getty loved how he sang very fast and upbeat. There are sounds of a donkey that makes her giggle and her eyes just twinkle. It just melts our hearts to see that twinkle.

So we decided to video Getty and daddy playing and singing while listening to the Wonky Donkey song. I’ll just say this, Getty knows exactly when the song will be over. Yep, that is all I am going to say. 🙂

Getty’s New Diet

From Kate:

Diet and best practices regarding nutrition is a very serious topic when it comes to our children. How do you properly nourish a child who is not expelling energy? How do you make sure a child is getting all the necessary vitamins when they are not able to eat what a child that can swallow can eat? Better yet, if a child with SMA who has only about 10% muscle mass compared to their counterpart that has 40%, what dietary direction to you take to make sure they are properly fed?

Since Getty was about three months old, she has been eating Enfamil Gentlease formula. I was lucky enough to produce breastmilk for a few months, then we needed to find a suitable replacement. Gentlease, at the time, seemed to be the answer. It was easy on her stomach and she tolerated it fine.

Mark and I really had not educated ourselves with other options for children with SMA. At the time, we were fighting and uphill battle with doctors on her respiratory care. We had to concentrate on the most important thing at the time, her lungs, and then pick up the nutrition battle when time became available. She wasn’t gaining an alarming amount of weight and we just put it on the back burner, by necessity.

When Getty turned one, we knew that we were going to have to make some changes. For any child, after one, there are just more things they need nutritionally. But for an SMA child, it is just so different. It is such a science to be able to adequately nourish them and, at the same time, provide supplemental vitamins and liquids to help them thrive. It is a delicate balancing act of calories, weight, and length.

The original plan came from our gastro doctor who recommended we just put her in the next toddler form of Enfamil. After many discussions with gastro it was clear that her knowledge on proper dietary needs for a child with SMA was limited . . . severely limited.

Having said that, she had the foresight to get us in touch with a Metabolic Nutritionist. We were able to meet with her in July, right after Getty got back from the hospital. We discussed a diet that has been very promising in the SMA community. The Amino Acid diet has been doing wonders for our kids. We knew we wanted Getty to start on it, but knew we needed some kind of medical research to make this happen.

The AA diet, in a nutshell, is an elemental free form amino acid formula. This elemental formula is produced from nutrients in their most broken down form. So for Getty and her friends on the diet,since it is so broken down so far, they don’t have to work so hard to digest it. In turn, they conserve energy in digestion that can be used in other ways. Milk and soy are eliminated. It is quickly digested and absorbed into the bloodstream.

After much discussion with the doctors, SMA community, and some incredible advice from a few amazing SMA moms, we started it. We were so freaked out to change over because Enfamil was easy. You just throw a couple scoops into some water and you are done.

The AA diet is like a science lab. Packets of Vivonex, juice, syrup, capsules, scoops of powder, a dash of salt, etc. You blend it up into a smoothy of sorts and voila!

It is best administered very slowly. You add each new ingredient in the diet every couple of days to make sure the child tolerates everything. We watched Getty very carefully, constantly watching her vitals, poop, temperature, weight, etc., hoping she wouldn’t vomit. We started the diet in August and we are just getting to the point where she is taking all all of the AA diet ingredients. She has tolerated it like the champ we knew she would be.

Here is the kicker: this diet has little research to back it up. It is one of those things where you know it works for our kids based upon the experiences of so many SMA families who have tried it on their own. You know that they benefit, but there is little research to prove it works. I will bet you that if asked, most parents who have or had their child on the AA diet would positively back it. We are just at the beginning of Getty’s full transition to her new diet and I would back it in a heartbeat.

Let me tell you what Getty can do now that she is on the AA diet that hasn’t been able to do in months:

1. She talks tons. Before this diet it was almost like she was choosing her times to chat with us very carefully, because she used to get so tired after conversing with us. The movement in her tongue is increasing and she is starting to use it to form more sounds.

2. Her movement in her hands and wrists has increased tremendously. She can now move her hand to her mouth. She hasn’t been able to do that since she was about 4 months old.

3. Her movement in her feet is slowly coming back.

4. Her head and neck movement is slowly getting better. Before she was just lay still, but now she is trying to move her head slightly.

5. Her overall well-being is better. She is so happy and so full of life. Before, Getty would get tired very fast and we were worried that because of her diet, it was internally slowing her down prematurely. Since the transition to the AA diet, we are convinced that was the case. She was getting too much protein and fat which was bulking her up and was not healthy for her.

6. Getty sleeps very deeply now. Her sleeping heart rate is in the 80’s, which is perfect for a restful sleep. This, in turn, gives her more energy for the next day. Before, her sleeping heart rate was up in the 100-110’s and she would often wake up in the middle of the night.

As a mom, I can tell you that all of these things are helping me “keep it together.” I know she is happy and my hope is that this diet will also help her fight off or recover from sickness as well.

One other thing that I am very happy about, and I know it is purely for selfish reasons, but I get to feed her real food. I know that might sound weird, but there is just something so basic, but also so beautiful, about feeding your child real food. I get to give Getty squash, apples, and prune juice. That feels good to me. As she gets older, we can try more fruits and vegetables to add to her smoothie. I simply can’t wait!

I know I have said it before, but I will continue to say this: Mark and I truly owe Getty’s life to our SMA family. Her diet, among other things, has given us the tools we need to continue to help her thrive.

If you know of another SMA family, I am sure you know exactly what I am talking about. We are all trying to do the best we can for our kids and it seems as though we are ahead of research when it comes to so many things. We are all living the practical side of this disease, and often times we find that the best resource we have is each other.

Getty Owl Foundation Website, Going Live Tuesday!

From Kate & Mark:

We are proud to announce the official Getty Owl Foundation website will be going live this Tuesday, September 20. We are so very excited to show you what we have created.

With the help of our friendly bees at Honey Agency, we have created a website with some really good content. We would also like to thank Sam Bonsett at Bonstar HTS for hosting our website. We would also like to thank our GOF Board for being the glue that keeps our foundation together. Or another metaphor that would work is you are the ores to our canoe. 🙂 We thank you all for your time and support.

So let me tell you all about it.

We wanted to create a simple design that was easy to navigate. Our hope is that it is user-friendly and everyone can find their way through with little confusion.

There is information about our family, about little Miss Getty, who is not so little anymore, almost 18 months :), and our mission as a foundation.

We have a section carved out just for SMA education. We provide some tools for visitors to learn about the #1 genetic killer of young children.

There have been some common questions that have come up since Getty’s diagnosis, so we grouped them into a section of FAQs; we hope you find that helpful. We have information on carrier testing, supportive information for the newly diagnosed, and an SMA Library to provide our visitors with some deeper knowledge of SMA.

We created an events section so people who would like to participate can be informed on how to raise SMA awareness and help us accelerate SMA research. We also show past events to give people examples of the kinds of things the foundation has done to fight SMA.

There is a place for you to shop, read articles, view pictures, participate, sign up for our Getty Owl Run/Walk coming in February, and read the Getty Owl blog.

Of course, our blog is NOT going anywhere … are you kidding? 🙂 I (Kate) would go crazy if that went away. The Getty Owl blog will be housed on the foundation website. You can still read and comment about our  journey. If you have subscribed to the blog in past, you will still get those updates.

We would love your feedback. So after Tuesday, perhaps you can come back to this blog post and let us know what you think.

We like to think of the website as a living document, so it will always be updated and tweaked as we move along.

Please join us for the official website launch on Tuesday, September 20!

We thank you all in advance for your support. We certainly wouldn’t be in this position if we didn’t know that people were reading, listening, and participating. We are only one family, but this family is focused and passionate to end this horrible disease for not only Getty but for all children that have been diagnosed and will continue to be without a cure. Our mission is clear and our momentum is building.