Getty Owl Foundation

You shouldn’t have to fight everyone to help your child

From Mark:

Getty and I are sitting here chatting and playing with the birthday balloons she got from the Phelps family. She loves them. We have a little helium tank from the party store, so I can keep them filled for days. They are tied to Getty’s wrist, and she loves moving them around.

Meanwhile, I’m trying to find out what we need in terms of equipment and supplies. We are applying for assistance and the person in charge over there asked us to tell them everything we need. We know SMA kids need plenty of equipment in general, so, pardon me if I think it’s a bit crazy to ask a newly diagnosed SMA family to provide a comprehensive list of everything we expect to need.

We don’t know.

I am asking the SMA community for help on yet another battle. There’s no other way to say it but, “This sucks.”

I always thought if someone gets sick, you just go to the doctor and they tell you what you should do. You would think the potential sources of equipment assistance would be readily available.

Nope.

This whole thing is just one exhausting battle after another.

G-Tube Battle

Our Kaiser gastro never told us we should be getting a G-Tube ASAP. The only reason we started having that discussion with her is that it happened to come up in passing in a conversation I was having with another SMA parent. I wrote the gastro an email asking about it, and she said it was recommended ASAP but she didn’t want to overwhelm us by bringing it up in our first meeting with her.

The problem is our next gastro appointment isn’t scheduled for another 2 months and the G-Tube procedure likely wouldn’t be scheduled for another month on top of that. So, our gastro was apparently OK with a three month delay on a procedure that should be done ASAP.

Call me crazy, but when the average SMA1 baby loses swallow function on average by age 6 months, and our child is 6 months old, only gets weaker with each passing day, and the average life expectancy is only 2 years … you don’t screw around for 3 months with procedures that are recommended to be done ASAP!

Nissen Battle

Further, our gastro and our Kaiser surgeon don’t agree on the Nissen recommendation. Now, on top of everything else, we are in a position of having to gain medical expertise on the Nissen procedure just so we can attempt to resolve conflicting recommendations between two of our doctors.

Surgical Nutrition Battle

In the process of learning about Nissen, the SMA community told me normal IV fluids (IVF) are not recommended for SMA babies during surgical procedures, and that we should fight to get her something called TPN instead of normal IVF. Apparently, when SMA babies fast for surgery and go without sufficient fuel in their system for more than 4 hours, they lose muscle mass that they will never get back. They are already weak, and any loss of muscle mass is a bad thing. So SMA babies apparently need TPN instead of IVF during the G-Tube/Nissen procedure.

I wrote our gastro about it, and she says IVF should be fine. Now we have to resolve the medical issue of the appropriate SMA nutrition during surgery. I wrote an email to Dr. Schroth, an SMA expert physician in Wisconsin to try to get current recommendations for SMA surgical nutrition because I may need to bash our gastro over the head with a medical opinion from a real SMA expert.

Social Work Battle

As I mentioned, we are also trying to get approved for government and private benefits to assist us with some of the anticipated medical equipment needs. We have a social worker through Kaiser who is supposed to be an expert at this sort of thing.

We applied for assistance though one state agency, but the agency denied us benefits. We happened to bring it up to another SMA family, and they said plenty of SMA families get that government benefit and the agency should not have denied us. In other words, our Kaiser social worker seems incompetent as well.

Another battle.

Everything we are trying to do so far is a fight, and we’re just getting started as we shift from “meeting the doctors” to actually trying to implement care. We have heard from the SMA community that we need to be educated, we will soon know more about our child’s care than our doctors, and we need to be advocates for our child. We are learning just how true it is.

Itty Bitty Kitty

From Mark:

When I met Kate, she had two cats: Libby and Maggie. When we lived in an apartment, we added a rabbit: Sophia. When we moved into a house, we added a dog: Cooper.

One day, Kate went for a run and rescued two tiny kittens off the street: Poppy and Jack. Unfortunately, Jack had a fatal disease called FIP, and we had to euthanize him after knowing him for only a couple of weeks. Poppy, on the other hand, grew into a big healthy cat. We think he’s a Maine Coon, which is a large breed.

We intended to foster Jack and Poppy and to find them good homes. However, we felt obligated to disclose to potential new owners that Poppy’s brother had the fatal FIP disease. At that point, we realized nobody would want Poppy, so we decided to keep him.

By April 2009, we had three cats, a dog, and a rabbit, if you are keeping count. We had been feeding a stray pregnant cat in the neighborhood at the time. We called her Charlotte. One day, we noticed Charlotte wasn’t pregnant anymore, so we scoured the neighborhood looking for her litter. Charlotte had given  birth to seven kittens in our neighbor’s garage in an open suitcase. We volunteered to take them all in, and our neighbor probably let out a huge sigh of relief after we left.

That’s 13 animals in our little home.

We fed, fixed, vaccinated, fostered, and placed Charlotte and six of the seven litter-mates, leaving one little black cat with us. We named him Itty Bitty because he was the smallest runt.

We tried to place Itty Bitty for about a year and a half. Another neighbor took in Charlotte, the momma cat. We asked her if she wouldn’t mind taking Itty Bitty as well.

She took Itty Bitty into her home but returned him to us after only three weeks. Charlotte, his own mother, kept attacking him mercilessly. I guess Charlotte found her cozy little home and didn’t want to share.

We took Itty Bitty back and tried again to place him. We asked friends and family, we placed ads online, and we sought the help of a friend who does a lot of fostering. Local no-kill shelters were all exceeding capacity, probably with an abundance of foreclosure kitties.

Now, with an SMA child, we decided we could no longer foster Itty Bitty. We were left with no real choice but to surrender him to the local SPCA today.

We only knew him for about a year and a half, but we hope they can find him a good home.

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.