'Tis the season to remember the little ones...

Owen had his pediatrician appointment today... he's gained 10 ounces. I am in love with his rapidly growing belly, so soft and lovable. And his cheeks... they feel like warm, sweet butter. Oh, baby fat!

We are wishing you all a wonderful holiday season and want to thank everyone for checking in with the Marshalls throughout these last five months. We've been amazed to learn of the people who are reading this blog. The positive thoughts, prayers and energy have helped tremendously.

The thing that I am reminded of, seeing a collection box today at a children's consignment store that I stopped at to pick up items to accommodate our rapidly growing baby boy, is that there are so many children who need to be remembered every day but especially this time of year, when friends and family gather together to celebrate life, joy and togetherness. The little girl who the box was in honor of had been born with very serious complications. Her parents insurance money had recently run out...

I'd especially like to remember Katie Gerstenberger, who at age 12, passed away in August from cancer. Kelsey and I had the joy of meeting Katie at Andrea and Mike's 4th of July celebration, just before Owen was born. She was a beautiful young woman - so full of life. She is the cousin of Andrea, our beloved office manager at GFC and the daughter of Karen, a woman full of grace and compassion.

There are also the children who we love, and who are too numerous to list, who are especially thought of this time of year... Scott James' son, Justice, and Owen's cousins, Sara and Madison, pray each night for Owen's health. May the same blessing be bestowed upon them. Our little Lily Hethcote, who we saw this weekend, is a little bead of happiness. May her smile always remind us of her parents, our dear friends. And then there are the ones we know are on their way, including Baby Endo, the child of our friends, Mick and Corey. May this baby be as wonderful as his/her parents.

Life is such a gift.

Until next year,

S/K/O

Home for the holidays

Owen remains seizure-free both in the physical manifestations of infantile spasms and in the brain wave patterns associated with these, according to our observations and the EEG that he had on Tuesday. We began the four week weaning off of ACTH on Wednesday - a reduction of 20% each week. We are very hopeful that the spasms will not return even though the possibility exists, most commonly during the weaning process. We appreciate each seizure-free day that we have with him.

As is the case each year during the four weeks leading up to Christmas, things are very busy at Grounds for Change and will continue to be that way until we close on December 21st. We are especially looking forward to our annual holiday closure this year. During this time, the week between Christmas and New Years, we get to catch up with a number of friends, enjoy the holidays with our local family and on the 30th, hold our first annual Gala Coffiesta at Grounds for Change.

Owen turned five months this last Thursday. His reflux has greatly improved and he is slowly gaining weight. He is wonderfully cuddly, nuzzling into our chest and faces when we hold him or lay on the floor with him. Coming off of the ACTH is not easy and he is very interested in being held much of the time. It is such a joy to be able to comfort him in this way.

We have put all doctors appointments, hospital visits and therapy sessions on hold during our vacation week. We'll be "home for the holidays" and enjoying every last minute of it.

Peace and love,

S/K/O

Welcome to Holland.

We were initially sent this piece when Owen was six weeks old, after our first stay at Children's Hospital. We have since received it from mothers of daughters with a disability, mothers with sons with a disability, therapists, family, friends... We thought we'd share.

WELCOME TO HOLLAND
By Emily Pearl 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 the 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. Michelangelo's "David." The gondolas
in Venice. You may learn some handy phrases in Italian. It's all very
exciting.

After months of eager anticipation, the day finally arrives. You pack
your bags and off you go. Several hours later, your plane lands. The
flight attendant comes 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 new guidebooks. You must learn a whole new
language. And you will meet a whole new group of people you would never
have met. It's just a different place. It's slower paced than Italy, less flashy than Italy. But after
you've been there for a while and you catch your breath, you look around
and you begin to notice that Holland has windmills, Holland has tulips,
Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're
all bragging about what a wonderful time they had there. And for the
rest of your life, you will say "Yes, that's where I was supposed to
go. That's 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 mourning the fact that you didn't get to
Italy, you may never be free to enjoy the very special, the very lovely
things about Holland.

Beating the odds

(to the tune of Frère Jacques)

Owen Keith Marshall
Owen Keith Marshall
Brave and strong
Brave and strong
Mama's little warrior
Mama's little warrior
Will beat the odds
Will beat the odds

I find myself humming this several times a day. Owen knows it well- I've been singing it to him now for a couple of months.

The ACTH injections seem to be working. The physical manifestations of the seizures ceased completely after the second injection during our inpatient stay at Children's last Tuesday. We (Owen, Janet and myself) were there for two days and one night - to provide training to me so that I can give him the injections each morning and to provide 24 hours to observe Owen to make sure he had no immediate side effects. We're on day seven of the treatment with 7-14 more to go. The number of days will depend on the results of the EEG...

...which Owen is having next Tuesday morning. As Owen's neurologist said, "Clinically we are treating "spasms", but it is the brain function abnormalities (i.e. hypsarrythmia) that we really want to cease." The EEG will tell us if these abnormal patterns have been eliminated as well. It seems the EGG is becoming an every other week event for us. What is it like? We enter a dark room. The techs mark on Owen's head with a red crayon-like pencil where the leads will go and then with a substance that resembles pomade, they attach each lead, wrap his head in gauze and prop him up on a pillow. I guess it is apropos, given that Children's is a teaching hospital, to say that he looks a bit like a science experiment. I don't like it that well at all, but somehow you grow used to it - such as you do giving your child an injection.

Thank god for steroids (ACTH). Seriously. They've given us our old Owen back AND they've made him a hungry little boy. He's steadily gaining weight again. Which reminds me to say that we didn't have the feeding tube inserted. Leslie suggested we ask about this once we were at Children's as it was her thought that it would not be good timing since ACTH affects the body's ability to heal wounds. When we asked the Attending neurologist about this, they confirmed this was the case. For now, though, it is not needed and we are so very, very, very happy about that.

From the windy, rainy, flooded Kitsap Peninsula,

S/K/O