'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

Honestly...

I've had a number of people lately comment on how it seems as though we are so positive, and that we seem to be such a happy family - but they suggest that this situation must be so painful for us as well. It is. In fact, there are few things that I can imagine that would be more painful than what we are experiencing right now. And the pain is not just felt by the three of us. It extends to our sets of parents, our siblings and to so many family and friends. There are so many people who are affected that sometimes it is unbearable to think about all who are hurting and concerned. But I don't know of a single person in our large web who is not positive or hopeful. Kelsey and I agreed a long time ago that we would do everything in our power to make Owen's life the best we possibly could. To pity him, to pity ourselves or to give up hope would rob him of that right, the gift of life at its best. This doesn't mean we don't have bad days, that we don't get tired of going to the hospital, that somedays things don't feel incredibly overwhelming, that we don't feel angry and wonder why this is happening to our child. We are only human. But the most recent developments remind us that the balance we have right now is very, very fragile and that we must appreciate Owen and each day at hand.

We had another BIG day at Childrens on Wednesday. Owen had a lumbar puncture to obtain spinal fluid for the tests to determine whether he has any treatable metabolic disorders. One is already back and turned out negative. The rest have been sent out to Baylor and won't be back for another week or two. The doctors suspect that these will come back negative as well. Owen also had an EEG which definitively illustrated infantile spasms. We then met with Dr. Simon, the Attending doctor who has been following Owen most recently, and Tim Feyma, the Fellow who saw Owen initially in August.

We were told in our meeting that four doctors (two chief neurologists and two fellows) completed a full review of Owen's records and this, coupled with the results from the chromosomal and metabolic disorders, have led them to a final diagnosis of hypoxia during labor/delivery. They can never be 100% sure in any case, but Dr. Simon feel confident that this is a correct diagnosis. According to the line of thinking at Childrens, a steady heart rate during labor is not always indicative of a healthy baby. They have seen on several occasions where a heart rate never dropped but the baby suffered from hypoxia. Owen's heart rate was monitored continuously during labor and never changed dramatically enough in one direction or another to indicate that there was a problem. According to the doctors we've talked to at Childrens, these events happen, in both hospital births and home births, and Owen was unfortunately one of those who seemed to be just fine, but at some point, wasn't.

The team of doctors had not fully reviewed Owen's EEG and various tests from Tacoma General when they started leaning towards a metabolic issue (versus hypoxia) after the MRI results from last week. The MRI initially seemed to indicate a metabolic disorder, given how globally the brain was affected and how there didn't seem to be any focused scarring at any particular point in the brain. They now realize that what they are seeing is considerable damage throughout the entire brain which indicates a major hypoxic event. This fits with Owen's first few EEGs - almost flat lines - with the hyponatrimia at birth and with the slow growth of his head over the last four months. It also fits with the recent development of infantile spasms, which indicate a serious underlying problem. Fortunately, somehow, Owen's other major organs were spared, which certainly gives him a better chance than most babies with this type of diagnosis.

We will be back at Childrens soon, as early as next week, to begin ACTH (the steroid used to treat infantile spasms), to get Owen on a G-tube (a feeding tube inserted directly into his stomach), to get further genetics testing for all three of us (as a precautionary measure) and to get Owen seen by the neuro development team to address issues of high tone. The ACTH may or may not work - it is our best hope. Cross your fingers, toes, light a candle, pray... we really need this to work. Owen is miserable right now and has so many seizures that we've stopped counting. We will have a couple of days of training on the administration of the ACTH at Childrens and then will be sent home to give Owen his shot of this every day for 2-4 weeks. If it doesn't work in this period of time, then it won't work at all. Regardless, it is a short course and we won't have to give it to him for more than a month. The G-tube will allow us to do a continuous drip of food at night. This will get Owen the nourishment he needs, will reduce the chance of aspiration of milk into his lungs and will hopefully allow him to get better, consistent sleep at night. We held out as long as we could, and hoped that we could get him the food he needed by mouth, but with the Zonegran (appetite suppressant) and the seizures (which make him even more prone to throwing up), he's back to gaining very little weight. We just can't let this go on.

I felt ready enough recently to look back into my mother blessing book which is filled with all of the lovely words given to me by many of the women in my life shortly before Owen was born. I wanted to share a poem that my friend, Angela, sent me. As intensely painful, shocking and challenging the last four and a half months have been, this poem illustrates why it is that my experience is also a treasured gift.

She Who is A Mother

A miracle occurred when the infant was first laid in her arms.
She was transformed from a woman into a goddess known as "mother."
She thought shed known the depths of love.
She though she'd seen the heights of success.
She thought she'd experienced that which is true joy.
But nothing compared to this.
All else faded when her baby drew its first breath,
and she became a co-creator with God.

-Kukana-

I've included a few photos from Grandpa Marshall and Nai Nai's visit a few weeks ago. We are so thankful to have such wonderful parents and their visit was a cherished one.

From Indianola,

S/K/O

What in life is gained without something lost?

It is such an intense and powerful lesson to learn - perhaps one of life's hardest.

Everything was perfect and perfectly planned. My pregnancy was easy, beautiful and seemingly without complications. Kelsey and I joked... how could raising a child be any harder than bringing up the GFC baby? The garden was ready for a few week hiatus from the hands of its resident care takers. The nursery was complete - a lovely second-hand crib, local art on the wall, a driftwood and shell mobile from findings during my walks on Indianola beach. We waited...

All parents have an idea of what they think their children will be like and what their experience of parenting will be like. I've gained so much in my loss... I know Kelsey would say the same.

I have an acute awareness of what really matters. I am thankful everyday that Kelsey, Owen, our family and our friends are in my life.

I have an understanding of the tenuous balance that exists in matters of life, health and death.

I have a deeper sense of myself and my connection with all other living creatures.

I haven't written for several weeks as things changed dramatically just four days after my last posting (during Grandpa Marshall and Nai Nai's visit) and we've been trying to cope, regroup, get further testing, and figure out how to move forward.

Owen began having seizures on November 3rd, what an EEG deemed a few days later to be "pre-infantile spasms." Since then, these have progressed to full infantile spasms, as evidenced by their timing, physical manifestation, etc. An EEG tomorrow will, no doubt, confirm this diagnosis. Infantile spasms are very rare, very difficult to treat and indicate that there is a serious underlying problem. Owen currently has 6-7 episodes a day, upon wakening, with clusters of 30-40 during each episode. They have left him very, very tired. He's not eating well or sleeping well. We started him on a medication, Zonegran, for these two weeks ago. This has not helped. The next step is ACTH - a steroid with pretty intense side effects.

We decided to move forward with an MRI, which Owen had a week ago and were very surprised to learn the results. Although they aren't 100% certain, the doctors feel that the MRI has potentially ruled out a hypoxic event (lack of oxygen) either inutero or during labor and delivery. They saw little, if any, scarring (cell death) or any structural abnormalities. What they did see is that Owen's brain is not growing as it should. They've done all of the chromosomal analysis and testing for the more common metabolic disorders, and they've all come back negative. We are now exploring a small number of rare, treatable metabolic disorders and the larger number of rare, nontreatable disorders. This will include more visits to Childrens, more blood draws and a lumbar puncture (spinal tap).

The singer, songwriter, feminist, and beautiful human being, Ani DiFranco, is one of my favorites. The lyrics from Buildings and Bridges have been running through my head, especially the following...

buildings and bridges
are made to bend in the wind
to withstand the world,
that's what it takes
all that steel and stone
are no match for the air, my friend
what doesn't bend breaks
what doesn't bend breaks

I'd like to think that I've also learned to be very flexible - in my belief of what's possible, in my ability to move through each new set of challenges and in my ability to go from conversations with doctors about what might be wrong with my beautiful little boy to appreciating everything that is right about him, right now.

Remember to be truly thankful this Thanksgiving. Give your sons, daughters, wives, husbands, lovers, family and friends a hug and let them know how much they mean to you and how much you appreciate them - today. We never know what tomorrow may bring.

Happy Thanksgiving,

S/K/O

Impossible things made possible

"There is no use trying," said Alice; "one can't believe impossible things."

"I dare say you haven't had much practice," said the Queen. "When I was your age, I always did it for half an hour a day. Why, sometimes I've believed as many as six impossible things before breakfast."

**Lewis Carroll**




Some of the things that have, at times, felt impossible over the course of the last few months, have become a reality the last week and a half:

1: Owen's EEG is normal. This is a big deal. For many children who experienced the type of trauma that Owen did, this can take months or even years.

2: Yesterday, Barb, Owen's Physical Therapist was here (in the photo below) and said she's seen positive changes in Owen each week. He had a great day yesterday - from his PT appointment to hanging out at the clubhouse for the Halloween gathering (I've included a photo below of Owen in his bear costume - the photographing was the one unhappy moment last night).

I saved the best two for last...

3: Owen gained EIGHT OUNCES in the last week!!!!!!!!!!!

4: Lastly... Owen, much to our amazement, rolled over THREE times this morning! This was unaided and from a full prone position with arms outstretched, to laying on his back. He was then totally relaxed on his back which has NEVER happened. The proof's in the top photos!





Thank you all for your love, prayers and good wishes these last several weeks. I believe they are, in part, what has made these last few days a reality for Owen. Knowing that all of you are out there, sending positive energy to Owen, helps ALL of us remember to believe during those times when things start to feel impossible.

Xo, S/K/O