'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

Happy Halloween!

We are doing great - Owen is gaining weight like a champ, it is our favorite time of year AND our favorite holiday and we've got a visit from Grandpa Marshall and Nai Nai coming up at the end of this week. I'll share more photos from our evening at the clubhouse Halloween gathering along with a more detailed "Owen update" tomorrow after our weight check at the pediatrician's.


Great Aunt Lei Ann sent a beautiful knit pumpkin hat (which is so cool, he'll be wearing it well past Halloween).

Aunt Laura gave Owen a colorful Halloween onesie, spooky socks and a ghost hat.


Owen loves his gorgeous quilt (in the photos below) that Claudia Kumai, a lovely friend and a former co-worker at Fred Hutchinson, made for him and that we just received yesterday.



Adam and Ann at Meadowlark Cafe in Lincoln, Nebraska sent a handmade pumpkin onesie that we've yet to capture on film. And for Halloween tonight at the Indianola clubhouse, Owen is dressing up as a Washington native species - Ursus Americanus - a black bear.

Lastly, Halloween is ALWAYS appropriately celebrated at Grounds for Change, and so in the spirit of our favorite holiday, I had to include our annual photo.


Happy Halloween!

Big Toe watches over...

Summary of our big day...

Osteopath. Most of the hour long appointment was spent taking Owen's medical history. Dr. Cavanaugh was able to spend another 10-15 minutes assessing Owen's structure. He feels that there is restriction at the base of his neck and confimred that there is some curvature of the spine. He really feels as though he can help Owen's nervous system and overall tension. We have another appointment next Monday.

Nutritionist. We are doing everything exactly right in fortifying Owen's formula. We are a bit disappointed that we (Kelsey) had to take it upon ourselves to do this and that it wasn't suggested earlier. Owen has gained another 3 or so ounces in the last four days and the nutritionist said that she is VERY pleased with his overall weight gain the last two weeks.

Neurology. A huge piece of good news... Owen's EEG from our emergency visit a few weeks ago, upon full examination, was deemed normal. The epileptologist who did a cursory review in the ER said that he was "surprised that it wasn't more abnormal" given Owen's history, but I guess after a full reading, aside from a few spikes (which were still within normal range), it was determined to be a normal EEG AND age appropriate! This doesn't mean that there won't be underlying "problems" associated with the trauma, but rather that Owen's been able to stabilize and sort things out a bit. We are so, so proud of him. He's come such a long way. There are still plenty of concerns - all of which we knew going in. Owen's head size has not increased much since birth, he is very high tone (meaning that he holds his arms and legs stiff much of the time), and he has trouble "organizing." But for now, we are delighted with the news of the EEG and celebrate this milestone. Or, as one of the women from the special needs forum at mothering.com said, with kids like Owen we call it an "inchstone."

Off to have some dinner (it is 8:00 pm) after an 11 hour day, two ferry rides, three appointments, lots of I-5 traffic and hospital fatigue...

Somebody in Iowa Loves You...

Our family has expanded - in richness and in numbers- since Owen's birth. Another gift given to us by our son...

Owen has enriched my relationship with my mother, my stepfather, all of my parent-in-laws, my siblings and many of my friends. Owen has also given me the gift of renewed ties with my mother's family back in Iowa. I was estranged, by no choice of my own, from most of this family more than 20 years ago. I have two aunts, an uncle, one great aunt, eleven cousins, four second cousins and, if my calculations are correct, over 50 other relatives once removed from those just mentioned. This separation left a big hole in my life.

I saw many of these relatives this last April, at my grandfather's funeral. All of them welcomed me back to Iowa, back to my roots and back to my family. When the news of Owen's birth and rough start reached the Midwest in July, the emails and cards came pouring in.

And tonight, Owen was presented with a shirt, covered with messages of love, good wishes and support from these aunts, uncles, cousins, second cousins and other members of our "new old family."


Thank you to all of our family in Iowa. Thank you Owen.

Life.

Owen's calendar is pretty full for a three month old and this week was especially intense. Monday he had a cranial sacral appointment with Mara. Tuesday was his first physical therapy appointment. Wednesday we had the Holly Ridge meeting to discuss intervention approaches and goals. Thursday was our weekly weight check at the pediatrician's.

Owen was initially scheduled for an MRI at Childrens this past Friday as well, but we decided at the last minute to cancel this appointment. The doctors at Tacoma General and at Childrens Hospital, at each of Owen's stays, felt that an MRI was not necessary. It was made clear to us that a future exam was optional and that should we decide to move ahead with the MRI, their suggestion would be to wait until Owen was at least six months old, if not closer to a year. Their perspective is that the brain changes so much during the first six months of life and that an MRI done earlier would not give us an accurate picture of development and prognosis. We went against that suggestion and scheduled this one at Childrens back in September, to be done at three months. We thought that perhaps there might be something going on in Owen's head that we would need to know about sooner. We had a different perspective on these things a few weeks ago...

We spent the first several weeks of Owen's life wanting to know everything, looking for everything that could be "wrong." I know that much of this was because we wanted to help Owen in any way we could. I think some of this was also due to the fact that we felt if we had every piece of information possible, it would help us to make sense of what happened and that perhaps with this information, we would be able to cope better. The former may be true, but not necessarily the latter.

We've learned that "coping better" actually happens with the passage of time. Just as with any new addition to the family, it takes time to get to know this new individual - what makes them happy, how to translate their signals, what routine works best for them. This is more intense with a special needs child, but the process is really the same.

I think the turning point was coming home after our last visit to Childrens, when we thought Owen was having seizures. We realized upon our return that we didn't want to spend the rest of Owen's childhood looking for what might be wrong. Owen is already three months old and the time has gone by so fast. We are ready to move on and enjoy our life with him, focusing on all of the things that are right and good. We know there will be ups and downs, challenges big and small, good days and bad days and surprises along the way. But that's life. I know everyone reading this knows what I mean. We all are living it. Life, that is. It is both beautiful and challenging and always full of surprises.

The photo at the top shows Owen working on his homework from his PT appointment. A rolled-up towel under his arms helps him build arm and shoulder strength and coordination so that he can eventually hold his head up when on his tummy. Barb was wonderful and we already have a number of things we'll be working on to try to decrease some of the persistent reflexes that might hinder Owen's ability to crawl, sit, walk, etc, and to try to build strength in areas that will help him achieve these goals. She'll be visiting us every week to work on exercises, stretches and intervention techniques.

The Holly Ridge meeting went very well and we are so fortunate to have access to such an organization. We discussed the nature of the evaluations that were done which indicated that Owen has distinct developmental delays - something we already knew but that had to be formalized on paper for Owen to be accepted into this program. We learned that Holly Ridge has a special needs preschool and school for older children at Wolfle Elementary in Kingston, just 15 minutes from our house. This is a huge relief for us knowing that we will have these resources so close by.

Owen has gained 4.5 ounces in the last week. We're hoping for a gain of 6-8 this next week as we've been able to increase the amount he eats these last two days. The liquid cheesecake is working!

We do have a number of appointments in Seattle on Tuesday of next week - Owen's first osteopath appointment, a consult with the nutritionist at Childrens and a follow-up appointment with the neurologist at Childrens that we saw in late August when Owen was an in-patient there. As for the osteopath appointment, we decided to go with Steven Cavanaugh, the DO in Seattle who took over Margaret's practice (the DO on Whidbey that I mentioned previously). She trained Steven and his office and hours are much more accessible to us. We're really looking forward to this visit. The neurology visit is a formality, a follow-up to check in on Owen's status. At this point, however, there is not much for them to do since he is now off phenobarbital. The role of the neurologist is more general cognitive and developmental assessment (which is being more closely monitored by our pediatrician, physical therapist and Holly Ridge staff), interpretation of tests and intervention in any instance of seizures. As we've discovered, we know Owen better than anyone else and usually spend these types of visits filling the doctors in on what we already know about him. The appointment with the nutritionist is for a review our formula fortification to see if there is anything else that can be done.

After next week, our weekly appointments will consist of a physical therapy home visit, an osteopath appointment and our weight checks at the pediatricians. We're hoping that soon, the weekly weight checks will not be necessary (the doctor wants to see 3-4 weeks of consistent weight gain first). We are also hopeful that we won't have to visit Childrens Hospital for several months.

Another piece of good news to add... My mother, Janet, has agreed to leave her job to help us out with Owen. As is the case with all of his grandparents, Grandma Janet loves Owen to pieces and was trying to figure out a way to help more while keeping her job. Meanwhile, we were trying to figure out how to free up some of my time so that I am able to work from home 2-3 days a week for a few hours. Our busy season at Grounds for Change has begun and there are several marketing efforts that I put on hold when Owen was born that I'd like to pick back up. Our thought was always that Owen (at the time, "the baby") would come into work with me. Well, things aren't always as you expect them to be and you learn to be flexible. So we offered Janet a "nanny" position with the Marshall household. She gladly (gleefully?) accepted, saying that this will change her life dramatically, in such a positive way. It will for us also. It will be wonderful for me to have consistent help with Owen, with the house and with taking him to his various appointments. It will also allow me to have a balance - to do the creative work of a business owner AND a mother. Leslie and Herb will still come help with Owen on Tuesdays. We asked if they'd keep this day and they insisted that they'd not have it any other way. The expression on Grandma Leslie's face in the photo below says it all.

Hope you all have a great Halloween - it's our favorite holiday. Owen has his own costume which he'll be wearing to the Indianola Halloween gathering at the clubhouse. We'll share photos...

S/K/O

The Many Faces of Owen

We visited the pediatrician's on Thursday... no weight gain from our visit three weeks ago. We thought this might be the case. There was a period of almost two weeks, immediately after our last visit, when Owen was keeping VERY little food down. Our suspicion is that he actually lost weight only to gain it back again after starting on the fortified formula last week. With the "liquid cheesecake," we are now on our way up - we've had weight gain days now for over a week. Our other new trick is a quick burst of air to interrupt the vomiting. Kelsey, in behavioral science mode, discovered about a week or so ago that this works to stop Owen from losing his food. As soon as we hear things coming up, we give a quick "poof" of air in his face. Yes, this was incredibly hard for me to do the first few times. But it's that or Owen loses much of his food and continues to not gain weight. The choice is pretty clear. What is really crazy is that we've gone from losing 8-10 ounces a day to now only about 2-3.

Owen continues to have more frequent alert periods and is gaining additional head control - enough so that he can face forward in the Bjorn carrier. We went on a nice walk today in the autumn glow of Indianola.

The other photos show some of the "faces" of Owen. We caught him "on film" pouting (he's a pro at the pout - it is so incredibly cute), yawning and looking very sweet while sleeping.

Lots of love from Indianola.

S/K/O

Liquid Cheesecake

As much as I hate to admit it, I can’t absorb enough regular food to grow. It’s not a problem with my appetite - I can drain 4 ounce bottles like nobody’s business. It’s just that I can’t keep enough of it down.

Mom and Dad decided that if I can’t keep enough milk down, the milk that stays down better be VERY powerful or I would never gain weight. They consulted a Clinical Dietician at Children’s Hospital to see just how powerful they could make my milk. Dad calls it Liquid Cheesecake and he cooks it up for me every morning. It has 30 calories per ounce. That’s 50% stronger than regular milk!

I now have my own part of the kitchen, just like Mom and Dad. Even though Mom and Dad’s kitchen stuff is more colorful and smelly, mine is pretty cool too. I have my own gram scale for weighing the formula powder and a special sugar called Polycose. Polycose is an easily digested source of carbs but it doesn’t taste sweet because it's made from hydrolyzed cornstarch. I also have little syringes to measure out my Microlipid, which is a 50% fat emulsion that has all kinds of good oils that don’t separate when they are added to my milk.

And guess what? The new milk is so think and creamy that it actually stays in my tummy better than regular milk. I can keep a little more of it down. So now I’m getting stronger. And longer. Little by little.

Some day, I’ll be able to have you all over for dessert.

Love, Owen

Another wild and crazy week

Owen is twelve weeks old today! In this short span of time, he has developed a medical rap sheet longer than my resume (and I've held a lot of jobs). He has also been tagged with a number of labels, most of which serve the purpose of categorizing him for medical and therapy purposes.

But most importantly, he's a little boy who has stolen our hearts and in a mere three months, has taught Kelsey and I so much about love, life, patience, and parenting.

So who is Owen really?

We've been spending a good deal of time lately encouraging Owen to gain additional head control. He's doing a great job. He's engaged, feisty, determined. He doesn't let his head stay down and picks it up each time it falls. I think it speaks volumes about who he is.




We notice that he holds our gaze for a bit longer than he did a few weeks ago. We give him time each day to improve upon his visual system. He is having more quiet, alert periods these days and is content to lay on his stomach, improving his neck strength and "worming around" (as Dad puts it), exploring the use of his arms and legs. He listens to the sounds around him and focuses intently on our voices, which have a wonderful ability to soothe him. He especially loves it when Papa asks if he's "ready for milk" (pronounce "meelk").






Kelsey and I find that we are so taken by our little boy. We sit for long periods of time and just admire him - examining his features, playing with his fingers, kissing his forehead. We're smitten. He loves to cuddle and be held and is very affectionate. His favorite is to nuzzle right in the crease of the neck.

So on to the "update"...

I know many of you have been asking about how things are going and we appreciate that you are thinking about Owen. He has gained a mere two ounces in the last two weeks (he now weighs an even 10 pounds) and the vomiting continues. Feedings yesterday and today have gone better and we've boosted the caloric content of his formula with polycose. We were set back a bit by another visit to Children's Hospital on Tuesday - replete with a transport by ambulance over to Seattle.

Owen has been having a very physical response to being put on his back. He spreads his hands wide (in what resembles a moro reflex), stiffens his back and legs, goes wide-eyed, pulls in a big breath and holds it. He then screams. He started having these about a week ago, one or two at a time when on his back on the changing table. I was home by myself Tuesday morning and he had a series of several (dozens) of these in the span of 10-15 minutes and I couldn't snap him out of it, even when I picked him up. So I called 911. It was terrifying - for both Owen and I. Needless to say, we left Children's with good news and not so good news. The good news - these responses are not seizures. Owen was assessed by one of the top epileptologists at Childrens and had an EEG - both of which indicated that these are not seizures. The not so good news is that they were not able to tell us definitively, what exactly these are. Kelsey and I suspect that this is either a fear response, since his vision is not fully intact and he spends most of his time on his stomach, being on his back may feel too vulnerable, or that it is simply neurological (a general statement, I know, and certainly harder for me to swallow given the intensity of his reaction). We've tried putting him on his back on the bed, on other soft surfaces, on an incline, and none of these have worked.

The doctor at Childrens suggested that Owen may be be having pre-migraine symptoms called torticollis (either due to his trauma or his genes). This doesn't necessarily explain the response when placed on his back (although it might), but may explain a few other things. Owen almost continuously holds his head up and to the right these days (this could be a sign of other things as well which I won't go into now as it is too premature). Both the doctor and the resident-in-training noticed this right away and asked (separate from one another) if migraines run in the family. They do - in my family - although torticollis has several causes, including complications in utero and during labor, some of which could apply. Other signs... Owen has never had problems feeding (suck, swallow, breathe pattern) but feeding has always distressed him. He vomits all of the time. He seems to be in a great deal of discomfort and will turn his head and grab at his face. He has recently displayed signs of nystagmus, although like the other symptoms, the latter could simply be from the neurological issues.

We will be taking Owen to a pediatric osteopath (DO) who is one of the nation's best - she lives and works on Whidbey Island and had an office in Seattle for 30 years. She comes highly recommended and we had actually made the decision to do this even before our recent experience at Childrens. Margaret practices cranial osteopathy (which as you can see from the preceeding link - a piece that she wrote - differs from cranial sacral therapy). According to her brochure, her services include "Traditional osteopathy including cranial osteopathy. Addressing such clinical problems as infant feeding and sleeping difficulties, digestive distress, irritability, torticollis, and head shape abnormalities resulting from a difficult birth, chronic illnesses, and developmental disabilities."

None of this therapy would "fix" the fact that Owen has experienced neurological trauma, but the torticollis, if this is indeed what is going on, may be compounding the effects and the cranial osteopathy may relieve some of the symptoms.

So for now, we continue to take one day and one step at a time... Meanwhile, we celebrate our lovely little boy and his twelve week birthday.

Rough days

I never imagined that it would be such struggle to feed our child. Isn't that what being a baby is all about - eating, growing and thriving? Another unexpected piece of our new reality...

The last few days have been pretty rough. Owen needs to take in 20 ounces of fortified formula or 24 ounces of regular formula a day to gain weight. Our days are completely "consumed" by these numbers. We keep a food journal. At any given time, we know how much food he's had, how many meals he's lost that day and how many more ounces we have to reach our goal, which always seems to be just out of reach.

We feed him every 2-3 hours, holding him still and upright for up to an hour after each feeding to try to keep things down. Feedings have become so stressful for all of us. Owen cries, oftentimes trying to avoid the bottle. He's learned that this, which should be a positive association, is actually what produces such discomfort for him. It is so distressing to watch. Then there is the sound. The choking, throaty sound which means that the food is about to come up. To a parent who is so desperately trying to get their baby to eat and keep food down, this sound elicits anxiety, frustration and disappointment.

This last week, the vomiting increased significantly. We averaged 12-16 ounces a day with 4-5 meals coming up (this equates to somewhere around 12-15 vomiting episodes). We weighed him on Wednesday - he had lost half an ounce in six days. We became desperate so took the advice of a few folks, including the naturopath, and tried goat milk fortified with flax oil, B vitamins, folic acid, vitamin E... We were told that it is the closest thing to human milk. He spent the next day vomiting almost everything. We spent Thursday evening rehydrating him with water and got him back on the original formula.

We've tried breast milk (when that was still available), hypoallergenic formula, easy to digest whey formulas, various regular formulas, goat milk... We may or may not try a soy based formula. Admittedly, we're pretty convinced that WHAT he's eating is not the problem.

Part of our challenge is coping with the acid reflux (GERD). This is a MAJOR hurdle for babies even by itself. The other challenge is that because of the insult to his nervous system, Owen's body behaves differently. He is hypertonic in the extremities (arms and legs are spastic and the muscles stiff) and hypotonic in his trunk (muscles are more relaxed and less able to move things through). The latter complicates the GI system - everything from keeping food down to moving it through and eliminating it, becomes more difficult.

We've known for some time now that Owen will face a unique set of challenges. We are as prepared as we can be at this point to come up with creative ways to deal with these. But our biggest hurdle right now, and the most critical one, is to get Owen nourishment. He needs calories not only to grow, but to try to heal from his experience. And so we will continue to find ways to "feed" him - in every sense of the word.

On being a mom

It was several days after Owen was born, when we were still at Tacoma General, that I realized that I was a mother. The ambulance, the seizures, the emergency transfer from Harrison Hospital to Tacoma General, the NICU, the tests... these were the unexpected fragments of my experience that I was attempting to process each hour and each day. And then I was walking down the hallway at TG one day and said to myself, "I am a mom!"

So, what has it been like, so far, to be a mom? There are the challenges, for sure. A friend told me a few weeks ago that the first thing she realized as a new parent was that she had to let go of all of the expectations that she had - of her child, of the experience of parenting, of the process. I feel like this piece of advice is especially true for us, but I'm comforted by the fact that it is a normal part of parenting any child. It is also challenging to so desperately want to help your child make sense of this crazy world, but finding that sometimes, all you can do is provide them with a sense of trust, confidence and unconditional love and then allow them to decipher their experience in their own way. But that is the beauty also, that we each possess our own mysteries, our own sense of what the world means to us and that is what makes each of us who we are. These are the building blocks of our "selves." This process happens time and time again, as each child is conceived and born, and the outcome is different every time.

Motherhood means so many things... I get to kiss the soles of Owen's feet several times a day. They smell heavenly - a little sweet, like warm bread, and totally of baby. They are so soft and his toes curl in each time as he senses my skin touching his. When he is sleeping, I am provided with a quiet opportunity to carefully examine his features, reminded that he is a part of both Kelsey and I and a culmination of our love for each other. He has Kelsey's eyes, my chin... . When he is upset, my voice and touch provide a safe haven for him. They comfort him and remind both of us of the connection that we've shared for almost a year now.

I've realized that becoming a mother does not happen in a moment's time. It is a journey. Each of us will learn, change, grow. That I am able to have this experience is such a gift.

To see or not to see...

Owen is visually impaired, which differs pretty significantly from blindness. All of the mechanics of his visual system work perfectly - his pupils, retina, optic nerve. Cortical visual impairment "occurs when there is damage or disturbance to the posterior visual pathways and/or the occipital lobes of the brain". It can be permanent or temporary and it is possible for vision to improve, especially in infants. The amount of potential repair will vary depending on the location, timing and extent of the damage as well as on interventions to stimulate the visual system. CVI is a condition that indicates that the brain does not consistently understand or interpret what the eyes see.

We have noticed that at times it seems as though his visual system is off-line and then at other times... we KNOW Owen is looking at us and trying to process the visual information. He will stare at our face or look around at our features and then rapidly close his eyes as if it is too much to process. When I mentioned this to the nurse practitioner who visited on Wednesday from Holly Ridge, she confirmed that yes, this is the way it is with children with CVI. Vision is sometimes "on" and sometimes "off" and can vary minute by minute and day by day. It takes a lot of focus and energy for Owen to try to process visual input and so closing his eyes in this manner is a sign he is taking a break from this intensity. An interesting note from the literature... "The vision of children with CVI has been described much like looking through a piece of Swiss cheese." Hard to imagine for those of us with no visual impairments but also easy to understand why this would be so confusing, especially for a baby who is trying to make sense of and organize his world.

Other characteristics of CVI:

• Children may exhibit poor depth perception, influencing their ability to reach for a target.
• Vision may be better when either the visual target or the child is moving.
• One third of children with CVI are photophobic, others are compulsive light gazers.
• Color vision is generally preserved in children with CVI (color perception is represented bilaterally in the brain, and is less susceptible to complete elimination).

Babies with CVI are easily over stimulated (visually) and need to be in a quiet setting in order to try to process visual information. There is a lot of great information out there on encouraging development of vision in children with CVI. We've also received information from Patty (the NP) at Holly Ridge and will no doubt be getting more once we are put in touch with the pediatric ophthamologist. One of our biggest challenges right now is getting Owen's pain and fussiness under control so that he does not spend all of his awake time attempting to deal with these issues and rather spends that time on development. He did have an excellent period of quiet alert time yesterday during which we presented him with several items to look at and touch (using the tactile sense to promote vision is one of the most effective ways to encourage visual development). We know he saw these items and were so encouraged by his attentiveness and willingness to visually explore the objects without looking away or tuning out. Will Owen see someday to such an extent that it will help him make better sense of his world? That is the question. We believe he will...

Love from Indianola,

S/K/O

Relief and Disappointment

The hallways of Childrens Hospital are becoming very familiar. It's good that they are decorated with trains, giraffes, fish and painted with bright, cheerful colors. It makes our repeated visits there seem somehow more positive, as if these creatures are the protectors of the all of the children who receive care there and the many colors meant to remind us of the broad spectrum of possibilities.

Grandma Janet's day with Owen was once again interrupted by another visit to the pediatrician, where Grandma Leslie met us so that we three could all advocate for Owen together. We were quite a motherly force. This was followed by a rush to make the 2:05 ferry, so that Owen could have the two GI tests done at Childrens Hospital in Seattle that would rule out pyloric stenosis and malrotation of the intestine. Grandma Leslie, with her extensive background in physiology and nursing, accompanied us as our translator, advocate, and nurturer.

The barium swallow ("upper GI") went as good as could be expected with a nine week old who hates being on his back while also being strapped down (with his arms extended above his head) and forced to eat. Can you blame him? The ultrasound that looked for pyloric stenosis was pretty easy and quick. The results of both tests were negative except for a diagnosis of decreased motility in the esophagus which the radiologist indicated is connected to the GERD (reflux).

Relief... Owen's weigh in at the pediatrician's revealed that he has gained 5.5 ounces in six days! That is right on target for normal weight gain at this age (about an ounce a day). He's been throwing up so much and eating less this past week - we thought for sure he would have lost weight. The fortified formula is obviously working. We were also very relieved that the tests at Childrens came back negative as each would have meant some form of surgery and further invasion of Owen's body.

Disappointment... The results of the tests leave us with two less things that we can point to and say, "THAT is the problem!" We are back to the initial thoughts of the discomfort stemming from GERD and the mind-body connection, i.e. Owen, given his history, being hypersensitive to pain and the goings-on in his body.

We've decided to take Owen to a naturopath, as a supplement to all of the other care he is receiving. Kelsey was given a great recommendation from a friend to see Ruth Urand in Poulsbo. We'll be talking to her about possible food allergies and other ways that we might me able to help Owen from this alternative perspective.

Off to shower and get ready for our 9 am appointment with the occupational therapist and physical therapist from Holly Ridge who are coming here to evaluate Owen for the early childhood development program. The nurse practitioner was here on Wednesday to do her assessment... We'll be meeting with all of them next week to discuss their recommendations for Owen. These are the things that feel good - knowing that there are tangible ways that we can try to help him.

Toast, Meep and OK...

As I type this, I am attempting to eat my partially burnt toast that is now cold and soggy. Nourishment has taken on a much different meaning these past two months. And as I type this, Owen sleeps soundly, snuggled up against Meep, the second generation creature, hand-crafted with love by Aunt Mary, that also comforted his papa when he was a child. The first generation Meep was loved to pieces - lietrally. Owen is such a physical baby - he craves contact and sleeps best when he knows that he's being cuddled. He loves to sleep with Meep.

We decided to launch the OK blog as we've come to understand that our journey with Owen will be a very unique one. We are so fortunate to have so many people who care about him and who ask for updates. We have so many emails that we've not yet replied to, phone calls we've not returned, and it can be difficult some days to find the time or emotional resources to continue to reiterate our story and our present circumstances. For those of you not familiar with blogs, you can subscribe to receive updates (at the bottom of the page) and can post your comments (immediately below) to share any thoughts you have. We'd love to hear from you.

We were back in the hospital four weeks ago, in late August - at Children's Hospital in Seattle. We went in with various concerns, including feeding problems (Owen was/is not gaining much weight), acid reflux and a suspicion that Owen could not see. We were able to get some of the feeding issues taken care of, get a confirmation that Owen is indeed visually impaired and that his EEG is still abnormal. The pediatric neurologist informed us that Owen has moderate neurological damage (moderate hypoxic-ischemic encephalopathy or HIE) - the cause of which will probably never be known.

In the past nine and a half weeks, we have had such incredible support from family, friends and community. We are so very grateful. Family continues to "feed" us in so many ways... Grandma Janet going to part time at work to help out each week (to get her "Owen fix"), Grandma Leslie and Grandpa Herb helping on Tuesdays to care for Owen (and do yard work, clean house, fold laundry, etc. etc), and Grandpa Mac and Nai Nai flying up regularly to lovingly hold Owen and fix gourmet meals. Aunt Laura flew out from DC in early September to spoil and love Owen. Uncle Mike has done an incredible job keeping things running smoothly at Grounds for Change. Speaking of GFC, the staff have been amazing - Greg, Mike W, Mike C and Andrea. Our little business could not have managed this without them. Our friends in Indianola and Seattle have been incredible as well. We've had meals and meals and meals (thank you Kelly and Kathryn for organizing), visits at the hospital and at home and so many hugs. We have friends and family advocating for Owen from afar (Melissa) and at home (Cousin Jen, Grandma Leslie). We've reached out and made connections in other ways, such as through the "special needs" forum at mothering.com. Through this, we have connected with families who have children with similar issues and histories and with this additional information, have been able to explore more specific treatments and therapies.

We will be going back in to Children's Hospital in the next few days to look into issues relating to GI problems that Owen is experiencing. He is in a great deal of distress and conintues to gain little, if any, weight. He begins the 0-3 early childhood development program this week, based out of Bremerton (30 miles way). They will evaluate Owen's needs and assemble a team of specialists (physical therapists, occupational therapists, nutritionists, developmentalists, etc) who will provide us with specialized tools to help Owen. At home, he is being given cranial-sacral therapy from a wonderful, compassionate woman, Mara Lindbergh, who lives and works here in Indianola. We massage him each day, hold him, play music for him (thank you, Jim Nason) and love, love, love him.

I hear the little bean calling now...

S/K/O

The OK Blog

Mom and Dad thought that it would be nice for everyone that cares so much about what is going on with me to have a singular and regularly updated place to go for the latest. Dad set up my blog (I think that he has always wanted to have a reason to say "blogosphere") but Mom is a much better communicator, so you know who will be driving this thing. I can feel the Big Love from all of you pouring into me every day to make me feel better.

XO, Owen