The GETty Crafty Craft Fair fundraiser on Oct. 16 in Sacramento has over 70 vendors, music, raffle prizes, Good Day Sacramento television coverage, and now 92.5 FM radio coverage. The generosity of others is amazing!
Thank you to Stacey Ball for coordinating the whole thing and for anyone and everyone who participates in any way.
For more info., please check out our Upcoming Events!
It has been difficult these last few days for our family. Trying to just sort out so much information in such a short amount of time has been testing and frustrating. Making sure the medical team is on the same page with our needs and wishes has been so incredibly surreal. Like Mark said before, who knew we would have to fight and arm ourselves so much to make sure everyone knows how to take care of our precious Getty. We are no longer in the fog, we get it, we know our next steps and if anyone gets in our way, oh boy I would hate to be that person. 🙂
I received a really inspirational parable that was given to me by a dear friend. Thank you Meri. I hope the author does not mind me sharing it. My purpose for sharing it, is because though I draw strength from the message, I believe it also has a universal message of acceptance and understanding. Those things we hold so tight perhaps need some re-evaluation.
Welcome to Holland by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability, to try to help people who have not shared that unique experience to understand it, to imagine how it would feel: It’s like this…..
When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You learn some handy phrases in Italian. It’s all very interesting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?” you say. “What do you mean, Holland? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy different guide books. And you must learn a whole new language. And you will meet a whole new group of people you would have never met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you have been there for a while and catch your breath, you look around…….and you begin to notice that Holland has windmills…and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy……and they’re all bragging about the wonderful time they had there. And for the rest of your life, you will say ….
“Yes, that is where I was supposed to go. That is what I had planned.”
And the pain of that will never, ever, ever go away……because the loss of that dream is a very significant loss.
But…….if you spend your life morning that fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…..about Holland.
And that is where Mark and I are. Holland is our new destination and we have bought the guidebooks, Getty is in her stroller, Cooper is leashed up and we are ready for a glorious walk together as a family.
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.
This whole thing is just one exhausting battle after another.
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!
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.
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.
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.
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!