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.