Getty Owl Foundation

Getty the Birthday Girl!

From Kate:

The due date of our little one had come and gone. As March 14th passed I thought perhaps it would only be a few days to wait, boy I had no idea. Finally on March 25th, Getty showed up to the party. I remember the day before, I had decided and that I was just going to be pregnant forever. The old adage that women are only pregnant for 9 months could not have possibly come from a woman. I think by the time I was overdue I was counting the days, minutes, and seconds until she came.

So here we are today celebrating our little Getty’s 6 month birthday. Getty must have been ready to get the party started this morning because she woke up earlier than usual… much, much earlier than usual. Where did the time go?

I remember when Getty was born, Mark and I would get a bit stressed out trying to figure out how to swaddle. Now I believe we could swaddle an elephant with the right resources. Is Getty pooping enough and why does the color fluctuate so much? Will she let us know when she is hungry? Is her head going to be permanently flat or is there a way to fix that?

All valid questions for a new couple that have never really spent very much time with an infant. The hows, the whys, and the what if’s were all a bit overwhelming to us.

Since Getty’s diagnosis the what if’s have been taken to a whole new level and then some. Even writing that sentence seems like an understatement.

Mark and I are arming ourselves with as much knowledge as we can. I am learning and accepting that Mark and I are dealing with Getty’s diagnosis in different ways. We are definitely pulling to our strengths. Mark is very logical and clinical and has the strength of diligent research and  persistent correspondence with the SMA community and our doctors.  I, on the other hand, am the emotional component, which is strange because I would never have thought that in the past. I am also enjoying the assisting in some of the  fund-raising events.

We had the opportunity today to meet the Phelps Family. Their little boy, Aaron, is such a great little guy. A real charmer, he even got Getty a few birthday gifts: an alphabet wheel, that we have already played with and she loves, some rings, and more water buddies for the tub. Thank you all for having us over. Your time and support continues to be so appreciated and absolutely needed.

Since the diagnosis, Mark and I are learning very quickly that we have to be Getty’s advocate. We are learning that our doctors, while very capable, may not share our same need to do all we can to help Getty thrive. I am growing frustrated knowing that not only are Mark and I working full-time to make ends meet, but also spending tons of time researching and contacting other families just to make sure we are arming ourselves with all the knowledge we can. It is exhausting and it is frustrating. You would think that if a doctor didn’t have the expertise in SMA, they would just come clean and open lines of communication with doctors that see SMA children all the time, rather than compromise a child’s health. We are learning SMA treatment and research has significantly flourished in the last few years. We did not become Getty’s parents just to watch her die; we became Getty’s parents to help her thrive and to love every second we have with her. We need to find doctors that share that same philosophy.

So after a very long day today, Getty and I do what we do best, nap. After getting home from Fairfield, I swaddled her up and we laid together, like we do every day, and got a nice three hour nap. What a special little girl we have. We continue to learn so much from her. How on earth can such a little being have not only so much control over her parents but have the ability to have so many people rally around her? Oh Getty how we love you so much!

G-Tube & Nissen Fundoplication – Preliminary Thoughts

From Mark:

Nissen what?!

I had a good phone chat with Dr. Kodali, the pediatric gastroenterologist. It was a good discussion on moving forward with the G-Tube, perhaps in a few weeks.

There’s also a procedure called Nissen fundoplication (Nissen) we need to learn more about. It’s essentially going in and wrapping some of the stomach tissue around the base of the esophagus to prevent reflux. Reflux is common in SMA babies and can lead to potential reflux aspiration and related pneumonia.

Although Getty doesn’t have a reflux problem now, it’s bound to happen someday, as SMA is a degenerative condition.

There is a split of opinion between gastro and one of the Kaiser surgeons on whether to do the Nissen.  Gastro is recommending G-Tube and Nissen, but the surgeon is reluctant to recommend Nissen in SMA babies, asking, “Why would you want to put a [SMA] child through that?” The surgeon’s thought is that a weak SMA baby shouldn’t be asked to endure the Nissen procedure.

Based upon a very quick read, it appears Nissen is recommended and the answer to the surgeon may be because I’d rather not risk putting a child through pneumonia caused by choking on reflux. I have more reading to do and consulting with our beloved SMA community. My hunch is they will tell me to find a different surgeon.

It’s like taking a crash course in medicine on top of everything else. Soldier on!

Daddy Daycare

From Mark:

Working at home most of the time is a double-edged sword. I had a productive day, although my working hours are now split more than ever into work and other things.

I finally got some bills paid, made arrangements for student loans, emailed back and forth with some doctors, tried to make arrangements to adopt out a cat we’ve been fostering for waaaaayyyyy too long, etc., etc. etc.

The best distraction of the workday, without a doubt, is Daddy Daycare.  Feeding, chatting, singing, and playing with the Little Owl is pure joy. Watching her little face light up when I walk into the room is exhilarating.

Love love love little Getty Spaghetti.

On the Medical Front

From Mark:

I haven’t posted as much as I would like because I am self-employed and Getty’s diagnosis really set me back with work. Also, I have been trying to get up to speed on the medical front.

I am learning that we should be getting Getty a gastric feeding tube (G-Tube or “button”) soon. This is a tube that is inserted through the abdominal wall directly to the stomach for feeding. This is necessary in SMA babies because they will eventually lose the ability to swallow as the muscles weaken over time. Losing the swallow function can lead to food entering the lungs, which can cause pneumonia.

Although Getty passed her swallow test and is doing fine right now, the recommendation is to get the G-Tube now while she still has the strength to undergo the surgical procedure. At the moment, our intention is to get the G-Tube soon, but we probably will not use the G-Tube for feeding until it becomes necessary.

We are also learning about SMA respiratory and pulmonary issues and the three basic philosophies of care:

1. Palliative Care: Generally speaking, palliative care means providing as much love, comfort, and support as possible while refraining from providing much or any respiratory support. It has been said the goal here is to add life to the child’s years instead of years to the child’s life.
2. Non-Invasive Ventilation (NIV): This means using a machine to provide respiratory support via a facial breathing mask, without invading or penetrating the body.
3. Invasive Ventilation (“Trach”): This means providing mechanical respiratory support via an invasive procedure such as a tracheostomy.

Kate and I continue to reach out to the SMA community for information, guidance, and support. People have been very kind and helpful, and we appreciate all of you. It certainly is a club nobody should have to join.

We are getting a better sense of how we feel about quality vs. quantity of life issues. We are learning more about the various options as we struggle to better define our own philosophy of care. Making decisions about digestive care, physical therapy, and nutrition is important, but defining a philosophy regarding respiratory and pulmonary care is crucial for SMA parents. Respiratory and pulmonary issues usually play the biggest role in establishing the quality of life of an SMA child.

These are not easy decisions to make, as each SMA case is unique and each SMA parent has his or her own values and philosophy of care.  There is no “right” choice and there is no “best” choice.

We get pits in our stomachs as we sit discussing the fate of another human being. It is particularly torturous in that it is our own daughter who just smiles, giggles, hoots, and coos, who knows nothing but love, and who places all of her trust and confidence in us.

All the choices available to us are horrible, horrible choices.

Meet Getty

Hello, my name is Stacey and I am going to be a guest blogger today on the Getty Owl site.  Today we have quite a few new visitors thanks to some wonderful bloggers who are out there spreading the word.  Since many of you are new, we are going to go ahead and start at the beginning.

This is Getty Storm, my friend Kate and Mark Storm’s beautiful 6 month old daughter. At the end of July, Getty went to her routine 4 month pediatric appointment. Kate and Mark assumed that the most painful part of this trip would be the immunization shots that Getty received at the end of the visit. What they didn’t know was that they would be told their daughter likely only had two years to live.

Getty was diagnosed with SMA1. Spinal Muscular Atrophy (SMA) is an inherited disease that causes progressive muscle degeneration and weakness, eventually leading to death. Infants like Getty with SMA Type 1 are born with very little muscle tone, weak muscles, and develop feeding and breathing problems over time. Weakness gets worse and will eventually become severe. There is no cure or treatment for the progressive weakness.

When Kate told me, I was crushed. As a new mom, I had no idea how to handle the news. Getty was Leyton’s first girlfriend…his cougar. I went home and cried all weekend. I made a tape of lullabies and cried each time I listened to it. I held Leyton tighter than I ever had and kept telling him I loved him with tears running down my face. Then I woke up and realized that I had to help Kate and her family. I decided to make it my mission to do anything and everything I possibly could to make things easier. I knew that the two things going for me was that I knew a lot of people and I knew how to throw events. Her insurance will not cover many of the medical expenses and equipment that Getty is going to need.

With the help of my friend Jenn, Becki and Meghan this  site for Getty was started. It’s a place for the Storm family to share their updates about Getty. It’s a place for people to learn about SMA. It’s a place to share upcoming fundraising events being held in Getty’s honor. It is a place to help raise money for and awareness about Getty and her condition.

The first fund-raiser is also on the books and moving and grooving!

GETty Crafty at Fremont Park is set to take place in Sacramento on October 16th. We have over 50 vendors coming out, live music and some great sponsors. We also have an AMAZING raffle that we will be selling tickets for. There will be more information on the vendors and the raffle coming soon so please stay tuned!

Now that you have read all of this you might be wondering how you can help. The first and easiest is if you have a site, if you tweet, if you simply Facebook…spread the word about Getty’s site and about the craft fair. We have created an event on Facebook, which you can see here:

http://www.facebook.com/#!/event.php?eid=130763776971424

If you are local, come out to the event. If you are a vendor, sign up to be part of the event by emailing me, staceyball(at)gmail.com!

There is also a cute little button that you can put on your blog letting everyone know that you support Getty Owl.

Finally, if you would like to make a monetary donation you can also do that here. This money goes directly to the family to pay for medical treatment and supplies that Getty will need. In the event of Getty’s passing, any funds that remain will be donated to further research and help other families out that are going through this same thing.

Thank you so much to everyone that has already shown their support. I’m so happy to be a part of all of this and could not have done it without you.