Waiting for blood

Hanging out at the Hospital - the plastic wrap holds the numbing agent to make access to the port less painfull. Its unclear why the blood is delayed - that's big systems I guess.

Bark Like A Seal

Last Saturday night I was concerned I may have to bring Oliver into the hospital due to fever. Fortunately, it never reached 101F. I was able to let him sleep and by morning his fever had passed. Other than the occasional sneeze and cough it didn't seem like there was much going on. He has been pretty mellow the past couple of days so I did know he was not feeling great.

Well, last night Oliver woke up bolt upright repeatedly last night with coughing fits -- the sound is unmistakable: he has a mild case of croup. Poor dear. It was quite distressing for him. And no wonder. He was clearly having a tough time. He is resting for now; taking a morning nap! When Oliver takes a nap in the morning you know he must feel terrible. My goal is to keep him relaxed as much as I can today and watch how he progresses.

Saturday Night Fever at the Disco

I'm a bit behind on the blog so I'll try to catch up a bit tonight. The time line is going to be all screwy but how about I start with today and work my way back and see how that goes?

Today was the big day. We went to Baby Loves Disco! George is out of town right now (sad face) so our friends Caterina and Geoff said that they would love to go with me and Oliver. BLD is a nationwide event for kids under seven. It's a fun space (usually a local club) where they can groove, get down, and shake their thang! After being a bit overwhelmed at first by all the lights, bubbles, music, and activity, Oliver settled right in and showed us his stuff. Caterina quickly caught on to his moves and has, herself, perfected "the Oliver": shake your fists in the air and do bouncing squats! That'll get your butt into shape.

It wasn't until we were leaving that I noticed he had a fever. When I got home I took his temperature and sure enough - fever. This time it is under 101 degrees (F) which is a good thing. He has been coughing and sneezing all day so I figure it is just a cold. O is sleeping now and I am dreading calling the on-call hematologist about it. The last thing I feel like doing is dragging ourselves into the ER when I know it is just a cold. I'll see what they say when I call.

Oh, and here is something momentous...Oliver wore a hat last night for 30 minutes and today for 20! Anyone who knows Oliver personally also knows that he can't stand having anything touching his head. Until now. Huh. You just never know about that crazy kid.

Jump back to October with me for a moment here. I didn't get the chance to let you know what we did for Halloween. Turns out, not much. We had grand plans that involved a lot of construction for our costume idea (not telling!) but without any extra hands around to amuse The Vole our plans never got off the ground.

Oliver did dress up twice though. Once on Halloween in the clinic during his monthly transfusion. He was dressed as a skeleton. You can see him here with his friend Matthew who also has DBA. We finally got to coordinate their transfusions on the same day so they hung out in the pack and play together. It sure did make the day go faster. The hospital also sent out volunteers to bring the trick or treating to the kids. It was fun watching adults and kids parade in and out of the clinic in their costumes handing out goodies.

The other time Oliver dressed up was at the Parent Infant Program were we go on Tuesdays and Thursdays. A giraffe! The beans kept him pretty distracted but he wasn't fooled for long and wanted out of the costume.

Now that I think of it....I suppose I can also include the Day of the Dead parade in the Mission district.

George's mom, Pauline, came to visit from November 2nd to the 12th. She arrived a bit weary from jet lag and I think looking forward to a quiet evening. But, oh... not so when you come to visit us having not slept for over 24 hours!

We decided that the only reasonable thing to do was to drag Pauline out for a night on the town. Does this photo convince you that we made the most reasonable choice?

In spite of the late first night carousing with the dead, Pauline managed to survive her visit with us. We had a great visit and consider ourselves lucky that we have such loving grandparents who are willing to travel many miles across seas and continents alike to visit with The Vole. Yes! Keep coming! We love having you all here. Especially Oliver. Visits with grandparents are unlike anything in this world. It's the best.

Before I sign off, I'd like to share two more pictures. They are from our trip to Portland and just crack me up.

I think Oliver felt like a cool cat in these glasses. He kept taking them on and off and looking at himself in the mirror and then laughing heartily.
This last one I love too. It took a lot of time to get this picture. I don't think that hat stayed on for more than 2 seconds at a time. We didn't buy it for him, of course, but I think it's a great look on him.

That Vole.... he can wear anything and look like a million bucks. Who does he get that from anyway?

P is for Potty

Before Oliver was born it had been my intention to pursue infant potty training with him. It requires a great deal of time, attention, and patience to apply this technique successfully but I thought I might as well give it a try -- I was going to be at home with the babe anyway, right? As we all know now, this was certainly not the case and my time, attention, and patience were being spent on issues of greater importance.

However, I did not give up on the idea of talking with Oliver about his potty and why it was there and what was done with it. We have been talking about it more and more recently particularly because Oliver has taken a fancy to his potty and loves practicing sitting on it. Another recent shift in his awareness is when I have him on the changing table and his diaper is off he will say "pee pee" right before or while he pees.

Well, tonight after his bath he would absolutely not let me put on his diaper or his pjs. We were playing on the bed so I was uncomfortable with the idea of him peeing on it, but we were having such a good time. Next thing I know, Oliver looks at me and says "pee pee". I quickly scoop him up and ask him if he has to go pee pee and would like to sit on his potty as I make a beeline straight for it. I plunk him down on his potty and next thing I know he is peeing in it!! Woo-hoo! I was thrilled, Oliver was thrilled, George was thrilled.

I've been wondering how all of this was going to play out. I know I have a long road ahead of me with potty training but it is exciting that we are on our way.

Mum shows off her Vole photos

Could they be more adorable?

Put another song on the jukebox, baby

A Joan Jett fan with a 50's jukebox

Oliver on the farm

Matthias and O hanging on to the radio flyer...weeeeeee

The Vole @ The Voodoo Doughnut, Portland

The magic is in the hole. Quite. But The Vole feels the ATM is a good second bet

All better!

Fever passed. Then 36 hrs of on again off again projectile vomiting. But now the end of the suffering seems near and The Vole is perking up. Yay!

Elton Vole

Oliver searches for the lost chord

All Quiet on The Western Front

Our fabulous team at UCSF alerted Portland Childrens Hospital who rolled out the red carpet for The Vole. Good news was his white cells were strong (they'd been a bit iffy before his surgery) so they filled him with antibiotics and sent him home.

The fever persists - he's at 101 this morning, but he is in pretty good spirits. Drank only water during the night - not like him at all. We await the blood cultures - but for now all is well enough.

You give me fever

We're in Portland and its dark wet and cold. But not The Vole. To compensate for the gloom he's up to 101.7 and shining like a beacon. So we phone it in and wait. Who knows maybe we'll be able to do a comparison of hospital food here vs San Francisco. More later.

Out From Under The Knife

Thanks to everyone who has called and emailed and checked in on The Vole. He is doing remarkably well.

Oliver was admitted into the hospital on Wednesday afternoon in preparation for his surgery. It was important to check his blood counts the day before to prevent any unexpected and unwanted surprises during the operation. All was well and they proceeded the next morning at 8:30 to remove this Broviac catheter and replace it with a port. He came through with flying colors and they felt confident to discharge us that afternoon. So we are home. Yay!

That's it for now. Thanks again for all the well wishes.

When it's good, it's good. When it's bad, it's bad.

August 16th, I brought The Vole in for a scheduled transfusion at noon. I typically bring him in to the UCSF pediatric hematology/oncology clinic every 3 to 4 weeks. This time, however, we wanted to push his system a bit, wait for 5 weeks and see how he responded. Turns out, he did okay. His blood levels hadn't dropped to a critical point and he didn't seem too affected by the anemia.

The days I bring him are usually not too bad. We'll spend up to 6 hours at these appointments and we use a pack and play that was donated to the clinic. Frankly, I couldn't do it without the play pen. He is so active there is no way could hold him in my lap for that long. As it is, he finds it very frustrating to not be able to crawl around on the floor.

Well, the week before we went in I was noticing that his line looked different to me. When I would flush the line I could see dark shadows moving - I shouldn't see anything moving in the line! So, one of Oliver's nurses, Stella, took a look and determined that there was a hole in the inner tubing and blood was collecting between the outer and inner layers. This means that after a years time we now need to make some repairs.

The picture to the right is Stella holding Oliver while letting him play with his infusion pump used to transfuse him with blood. Check out the bag hanging above O... ghoulish, no?

For some reason, on this particular day, Oliver had got his panties in a bunch and decided to throw his first temper tantrums (several over the course of the day) and also couldn't settle down to take a nap. Nobody is happy. By that, I mean, I am not happy.

You can see how frustrated he is in the picture to the left. He is so strong, and so annoyed about being in the pack and play that he has completely lifted himself off of the mat with the strength of his arms. He does this several times. Go Oliver!

5 o'clock rolls around, O is done with the transfusion and he is still awake. The problem is we now need to repair his central line but to do so he needs to be absolutely still. My suggestion is Benadryl... a surefire way to knock him out for at least an hour. In the meantime, I have called George to come be with us during the procedure . It's great to have him around when he arrives. I have found that I just can't quite deal with these additional situations as well on my own. Mama of The Vole needs backup! Who better to call than Keeper of The Vole?

As you can see from this photo to the left, Oliver is now passed out from both exhaustion and the Benadryl. I've covered his eyes with a shirt to keep out the light. Repair is underway.

Nope! That's not blood you see. It's Betadine splashed around the site to keep it clean. If you look at the white gloved hand, you'll notice the splint that now connects the original portion of the tubing and the new tubing held together by.... glue. Hmmmm.... I admit to low confidence in the procedure.

We are almost done with the repair when Oliver wakes up, now needs to be restrained, and he proceeds to freak out. I don't blame him. I would too. Poor guy. He really goes through more bullshit than you can imagine. And amazingly, he handles it all remarkably well. Anyway, by the time the repair is finished, my nerves are completely shot, George is desperately trying to console him, and Oliver is ready to pack his bags and get out of town. We go home and crash for the night.

Fast forward to September 14th. We are back for his next scheduled transfusion and this day is much, much better. Oliver fell asleep within 10 minutes of
watching "Elmo goes to Grouchland" and slept for a solid two hours. Hooray for Oliver! You can see him here asleep in the pack and play while receiving blood.

I've also included a picture of the view from our room that day. This is looking east towards downtown.

If you look carefully you can see the Transamerica building in the right of the photo. Some days we have a view to the north and can see Golden Gate Park and the de Young Museum.

The weekend comes and goes; completely pleasant and uneventful. The same goes for all day Monday until about 9pm. George had just left the apartment, I was putting Oliver to bed, turned off the light when I heard him poop. So, I turn the light back on and notice that something is not right. He is in his usual position to sleep, on his tummy with his knees under him, but his behavior is odd. At first I thought he was concentrating hard on a poop but then I just knew something was wrong. It's weird how you "know". I didn't actually "know" anything other than something had changed, and not for the better. I call George to come back downstairs and by the time he does (less than a minute) Oliver is now shaking and unresponsive.

We quickly grab our things and off to the hospital we race. Other than when he was first born this is the most scared that George and I have been about Oliver's immediate well being. Within 5 minutes of arriving at the UCSF Emergency Department Oliver comes around, sees buttons to push and begins pointing at everything. As I am trying to convince the doctor examining Oliver that he really was doing something frightening, Oliver throws up all over us and now has a fever of 103F/39.4C degrees. Okay. We're not nuts.

Oliver is carefully observed, given Tylenol (and then throws up all over his nurse), blood cultures are sent to the lab, and antibiotics are begun (standard of care for him with fever because of central line). Turns out that what we saw happen was a febrile seizure. This occurs mostly in kids his age in response to a rapid rise in temperature and we are quickly assured not to worry about any lasting effects.

After O is treated and the doctors are sure he is okay we wearily drag ourselves out of there and arrive home by 4 in the morning. That next day Oliver and I head out to the Hem/Onc Clinic for his second dose of antibiotics. We didn't go until late in the afternoon since we were so tired that morning. Around 6pm we are ready to leave when his nurse case manager, Laura, informs us not to leave... his blood cultures have just come back positive for a gram negative organism. Oliver has bacteremia. Given his constellation of signs and symptoms (shaking chills, high fever, vomiting and diarrhea) I would go so far to say it progressed to septicemia.

I call George and let him know that we are going to be admitted into the hospital. Laura and I walk across the street with Oliver and it's back to 7Long we go (the pediatric hem/onc floor). Unfortunately it's a familiar place, having been there a couple times before. This time, however, Oliver is placed in isolation. Not surprising since many of the kids on this floor are severely immunocompromised. We don't know what bug is roaming around in our boy at this point and precautions need to be taken to protect the other children. This means everyone who comes in is fully gloved and gowned to avoid accidental transfer to another patient. This also means that Oliver cannot leave the room. It's going to be a long week....

At 3am that night Oliver has chills and within 2 minutes has gone from a normal temperature 97.7F/36.5C to 104F/40C degrees. Wow! The nurse kept taking his temperature because she couldn't believe that it had jumped that fast. Next thing I know he is baking hot and we are giving him Tylenol again. The concern is that he not have another seizure. Now that he has had one he has about 30% chance or greater of another until about 6 years of age.

It's not until Thursday (I think) that we find out the name of the culprit - E. coli. Not the highly toxic kind you hear about on the news but the generally benign organism that lives in our gut. For reasons unknown, they permeated his intestinal lining and the central line may have played part in harboring the bug allowing it to get out of control. Now there is discussion about removing his Broviac catheter.

We knew there may be a chance of removing his catheter after it was repaired but the hope was that we could wait till we saw what kind of response he had to the steroids. So, I forgot to mention that the Monday he got sick was the first day we started giving him Prednisone. The plan is to give the maximum dose of Prednisone for a 2-4 week trial and start tapering the dosage once he is seen to have a response (only about 30% of DBA patients will respond). The response they are looking for is an increase in red cell production decreasing or eliminating the need for blood transfusions (more about this in another post later).

Well, that Monday we had just given him his second dose of Prednisone and within 30 minutes he is having a seizure. At the time we had no way of knowing if he was having a toxicity reaction to his medication or was sick due to some other cause. I think this is another reason this episode was so scary.

The end result of all of this is we are discharged Friday, September 21st and can continue administering his antibiotics at home. Hooray!

This is Oliver very excited that we are about to blow out of here within the hour.

The current plan is to check blood cultures again the first week of October to be sure the bugs have been squashed. He'll be transfused on October 5th and then he is readmitted into the hospital on October 10th in preparation of surgery the morning of October 11th. It's been decided to switch out his Broviac catheter in favor of a Port. Finally, Oliver will be able to have baths, be fully immersed in water, I'll no longer need to maintain his line everyday, and best of all it will greatly reduce his risk of infection. The down side is that he will now have to endure needle sticks. Hopefully, in the end it will greatly improve the quality of life for all of us.

I'll be sure to keep you all informed about how the procedure goes and if you please, keep Oliver in your thoughts and prayers.

The Accomplished Vole

(checkout the brightly colored UPDATES!!!)

Have you ever heard those parents who endlessly go on about how great their kid is? Completely unaware that you may have something to say about your life and it probably doesn't have anything to do with children at all. And on and on they go about the whys and the hows of their little genetic prodigy sending all those around them glaze over and enter into a torpid state nearly like oblivion.

Well... think I may have become one of them. Oops.

I know that all parents think their kid is the greatest kid in the whole world but I have to say, I think Oliver really is the greatest kid in the whole world. And just to prove it to you, I have decided to list all (well... there are tons more but these are the highlights) of the amazing things that he is able to do. And remember: we were told after he was born that he was not supposed to be able to do most, if any of these things!

Let's just call this Vole Appreciation Day.


WORDS (pronunciation not perfect but we're getting there):

mama, dada, duck, quack, hat, hot (ha), good (goo), mom mom, diaper (di di), home, dog, banana (nana), yeah, yes, water (wawa), Gigi (his playmate), updated 11/6/07: go, on, in, this/that (dee), apple, cold, cool, pee pee, bath (bah), makes monkey and sheep sounds, no!, fantastic (ta ta), taxi (tahya), nose, eyes, mouth (maow), bottle (ba ba), toes, tea, choo choo, book (boo), ball (gall), hi, bye bye, elmo, pumpkin (pump pump), wow, done, fish (fis), light (ight)

SIGNS (this is a big deal since he has always been reluctant to use his hands):

dog, pig, fish, eat, hat, done, more, wheels of the bus song (wheels go round, doors open and shut, people go up and down, horn goes beep, wipers swish), hug, updated 11/6/07: monkey, sleep, twisting motions of hands for motorcycle complete with vroom vroom, done, fish

ACTIONS (a very short list of a very active boy's abilities):

walking, drinks out of a cup, climbs everything, goes up and down stairs, goes down slides and climbs up them too, throws balls and plays catch, blows kisses and gives big wet ones too, claps hands, waves bye bye, Indian howl, mimics sneezing and coughing, blinks his eyes to flirt, blows on food when too hot, learning to snap fingers, claps in time to music, loves to "play" the piano and bang on drums, laughs hysterically a lot, plays peek a boo, high five, dances, asserts his needs with a fierceness that would make Attila the Hun proud, updated 11/6/07: points, uses potty, trying to run, jumps, turns around in place to a favorite song, points at eyes, ears, nose, mouth, toes, brushes his teeth, uses a fork and spoon

...phew! There's more, but you get the idea. Oliver, clearly, is a very busy boy with lots of things to do in a day, so he is not going to let some pesky pessimistic doctors dire predictions get in the way of the days fun. He is one CAN DO kid!

The Big Birthday Bash

Aaaccckk!!! Who set my cake on fire!

Oliver and his friends Julian (l) and Gigi (r) eat birthday cake.
Julian admires Oliver in his birthday crown.

Oliver turned 13 months old today. How is this happening? I'm just getting over the fact that he is one year old. I know what's going to happen -- one minute he is laughing his head off because he figured out he can suck on my nose and make me laugh and the next minute he'll be old enough to be horrified that he ever sucked on my nose at all. Ah, well... I want nothing more than for Oliver to grow up and find someone who's nose he can be excited to suck on.

Anyway, all this growing up business also means that it was one month ago that we held Oliver's birthday party on Baker Beach, right next to the Pacific Ocean for those of you that don't know the area. Given that we feel like we are just barely treading water most of the time we were fortunate that our friends Sarah and Sabrina stepped up and organized the party for us. Thanks again you two!!! It's likely that had they not done so we would not have had a party at all.

Well, in case you don't know this... one of the things that I love about George (and there are many things, mind you) is his natural ability to feel and express enthusiasm. This enthusiasm often often leads to excess. Not that that is a bad thing... it's just it usually takes me by surprise. So, the nice little party of 10 to 20 or so people I thought might show up turned in to about 60 or more! Oliver is one lucky little dude to have so many fans.

With so many people it was tough to chat with everyone the way we would have liked but it was fabulous to see everyone there. Folks brought their families, their dogs and their high spirits. George did a great job with the decorations; blue and yellow helium balloons, lots of rubber duckies to give away and a pinata. The weather turned out to be a bit foggy but it was pleasantly cool and not too windy. Perfect.

Somehow we managed not to take any photos. If there is anyone reading this who has pictures from the party please send them to us! We'd love to have them. Even though we don't have any still photos from the party, we do have some video. I haven't figured out how to attach video to the blog yet but I included the links to seeing what Oliver did that morning of his birthday at Sarah's here and the video of us singing happy birthday to him at the beach.

Thanks to everyone who came to the party and made it so much fun. And to those who couldn't make it -- we missed you!

Mom Mom Visits The Vole

Once again, I need to engage in a bit of retroactive catch up. I'll try my best to get up to date over the next couple of days. This is my first installment.

I'll start with the beginning of summer. The last week of June and the first couple weeks of July, my mom came to visit for a little over two weeks. Well... she and Oliver had the time of their lives. Mom did me the tremendous favor of taking Oliver in the mornings when he woke up so I could catch up on some sleep. By the time I got up he was in a new diaper and clothes, fed and watered, and playing with Mom Mom. Wow! Thanks mom.

Oliver has not been known (until very recently) to have a very long attention span, but somehow, my mom captured his attention like no one else. She would sing, dance, and teach him new "tricks" with a relentless ferocity that only a Mom Mom could do. And all the while Oliver would look up at her with rapt attention. Take the following pictures, for example:

Rapt I tell you. I could stand on my head and sing the star spangled banner and I couldn't get his attention like that.

And look how happy they are!


Again, eating breakfast out, Mom Mom is teaching Oliver some important life lesson. He is all ears.

Some of the highlights of mom's visit include my refrigerator dying over the weekend (that was a four day stinky mess), trips to Oliver's daily appointments, a visit to the zoo, 4th of July fireworks in the park, and a special getaway to Napa. While in Napa we went to Indian Springs Spa. Oliver wore mom out while George and I enjoyed a mud bath and then the pool. Eventually Oliver wore himself out, giving Mom Mom a break.


Thanks again mom for all the help! George, Oliver and I all had a great time while you were here and we are so glad that you are coming to visit again in September.

Seriously people, you need to know that mom taught Oliver how to do more things in two weeks then all his physical and occupational therapists over the past several months. Call it good timing if you must... but I just call it the power of Mom Mom.

Here, mom and I gaze into my (then new) camera phone while out to dinner at the Beach Chalet.

Nature or Nurture?

It's been near a mere year since Oliver was born and I have had plenty of time to ponder how much of who we are is determined by nature or nurture. I think I have made my decision. Take a look at these faces.

A Brief Check-In

Allow me to go nuts for a moment here. I recently bought a new cell phone with a camera function. I just took a look at the photos I have taken and I have got to share them with you. Here are some of my favorite photos.

Here we are in the park at the panhandle. I tried to explain to Oliver that no matter how much he loves sand, his new look is just in poor taste. With a reproachful look in his eye, he merely responded by saying "Heil Sand!"

This was a fun morning at our one of our favorite breakfast spots, The Pork Store. Well... Oliver was having fun until I decided to use the camera light. Yeouch!!

Ahhhhh. That's better. Now Oliver can look me straight in the eye and say, "Why mom? Why would you do that to me?"
Note: The hair. This is how Oliver looks after George very lovingly preens him.



And last, but certainly not least, this photo is from tonight. After a hard day at play and no naps, Oliver succumbs to exhaustion in mid chew. He woke up briefly 2 hours later with a confused look on his face wondering how he got into bed and why there was food in his mouth.

All in all, this has been a great month. Oliver is doing fantastically well. I am enjoying every moment with him. Every achievement is a huge victory and it brings tears of happiness to my eyes.

Mom is coming to visit next week for a little over 2 weeks. I am looking forward to her stay and I think she and Oliver will have a blast together. Hopefully, this will me a get a bit more time to fill in the gaps with what we have been doing this month.

I'll be back soon!

Just An (A)typical Day

I keep thinking, "surely, I can write a quick little something about what Oliver and I have been doing each day" until, like tonight, he has only just thrashed himself to sleep at 10:30 at night, having only had barely two hours of nap time since he woke up at 7:30 this morning. That's a long day people. I am pooped. So, I count it a miracle that I get the chance to write anything at all.

Now, before I collapse into bed myself here is what we did today: The morning was reasonable. Oliver woke in a great mood. We have both been sick with a head cold and now that it is beginning to pass he waking in better spirits. He was very hungry for the oatmeal cereal and egg I offered this morning which fueled his way over to the TV. Oliver has recently discovered that if you press the buttons on the box, strange and wonderful things will happen. People talk to you, noises get loud and soft, and colorful pictures move about. The weather turned for the better so we made our way outside while the gettin' was good. While walking to Golden Gate Park he fell asleep and I decided to walk him to Stow Lake. Turns out it takes an hour to get there from home. That's a lot of walking! O woke up in time to see the birds and ducks.

Ducks, if you'll remember, are one of his favorites. Second only to dogs. We didn't get a whole lot of duck action but just enough to keep us amused. And I am pretty sure, though I could be dreaming that he said "duck" today. Okay, so one of the times he said "guck" but, hey, he's not even 11 months yet. Given that I may, just may, be susceptible to wishful thinking, I have some doubts that I heard what I think I heard but it was fun none-the-less.

Now comes the walk back. An hour later, and a much less happy boy in tow, I drag us upstairs only to get ready to go out again for an appointment downtown. Really all I want to do at this point is nap. We get to Oliver's appointment with Lee (I'll talk about her some other time...she is great!) an hour or so later we are back on the bus to go home, meet George, eat some dinner, and then rush off again to go get my haircut.

Many of our days past have been consumed by medical emergencies, appointments and other assorted dramas. It is nice to have such a normal "typical" day (though atypical for us). All in all, a good day. Now off I go to collapse into bed.

Everywhere A Quack Quack

On a typical Friday, Oliver and I attend a Parent Infant Program at California Pacific Medical Center. Run by physical, occupational, and speech therapists this program is specifically for children with special needs. We play and sing and Oliver has a great time; it turns out that he really enjoys being around other kids. A couple of weeks ago he got to do one of his favorite activities...play in the big bin of balls. Now, anyone who knows Oliver knows that playing with balls is an endless source of delight. So, to be up to his elbows in balls is almost too much fun. I took a photo of him in the bin. I'll try to get it up on Flickr soon.

Well, this particular Friday, Shana, one of the moms in the group invited us to go to the zoo with her and her daughter, Gigi. It just so happened that we didn't have any other appointments that day so I accepted. Who knew the zoo could be so much fun! It's rare that O and I get a day like this... easy and breezy like we don't have a care in the world. So it was quite a treat indeed.

So, we got to do the same thing this Friday. Went to group and then went out for a stroll. This time we walked along the marina. Today is cloudy, windy, and around 60 deg., but the humidity is high so it feels fairly warm. We saw dogs, birds, bicycles, a pelican, and lots of choppy waves on the bay. Okay, so no ducks to drive the boy wild but, all in all a good day. Oliver finally succumbed to exhaustion around 2:30pm (he has been up since 6:30am) and will hopefully get in some good rest before we bring him over to friends of ours tonight.

Our friend Christine volunteered to babysit the boy this evening so George and I can have a night out on the town alone. A very generous gesture that I am excited about. It is my hope that Oliver is on his best behavior. He can be quite a handful when he is at his best and utterly exhausting when at his... let's just say "not quite himself". So, I hope you have fun Christine! I'd love for you to volunteer again:)

Uh, oh. Speaking of, looks like O is waking up. Will write more about his latest shenanigan's again soon!

First Things First. Let's Back Up.

Before I jump feet first into the bloggy waters of Oliver's life I would like to acknowledge that there are some members of our friends and family that have not received emails or detailed information regarding Mr. O's surprisingly difficult arrival onto planet Earth. In order to catch everyone up I am posting the two emails that George composed. One email was sent shortly after Oliver's birth and the other was an update sent at 7 months.

I considered posting heavily abridged versions of these emails since they are quite lengthy and contain a great deal of emotional and graphic content. But then I changed my mind. See... George spent the time pouring his heart and soul into these emails when I could not and if I were to share with you anything less it would diminish the importance these emails held for our family. If you find them difficult to read then you just might have a tiny taste of how difficult it has been to live it.

On the up side, once you continue past the emails it is pretty much good news all the way. While it is not always easy, life with Oliver is always exciting and challenging us to experience ourselves as greater people than we ever thought ourselves to be.

Best/Worst Week Ever aka The Story of Baby O (July 25, 2006)

The Not Very Short Story of Our Baby So Far

Hello friends, family and loved ones: This is a quick update on the birth and progress of our beautiful baby, Oliver, AKA The Vole. Some of you know parts of the story, some none, so here is the story up to this point.

We are shattered, sad, bewildered, confused - in addition Jill is recovering from an incredibly painful physical ordeal, which we will spare you the details of. As a result we apologize, but we haven't really spoken to anyone as we have been too heartbroken to connect. But thank you for the texts, they have been a lifeline.

Please bear with us for the long and painful telling, but its ultimately cathartic for us to get this down. And please bear with us if we don't want to repeat this story to each of you in turn. We really don't want to relive this again and again, despite the care and concern of all you lovely people, so we are providing you with the full details now, once, so we won't have to repeat ourselves. We appreciate your understanding as we right ourselves.

At 2:30am on Wednesday, July 13th, Jill went into labor and we headed off to the hospital. Jill was in incredible and unremitting pain and seemed to have consistent bleeding, nothing like the books that we had read, which alarmed us. But the staff at SF General were, for the most part, very accommodating and helpful. It was the longest most intense most emotional 33 hours of our lives. But at 11:17am on Thursday, July 14th 2006, our child, Oliver, who had up to now just been known by us as The Vole was born. We instantly knew we were in trouble.

Although he came out pink, he was surrounded by a team of doctors due to meconium that had been spotted in the amniotic fluid. This turned out to be the least of our problems as Oliver, refused to breathe. The doctors became increasingly urgent as his lifeless floppy body refused to respond to aspiration or the usual tests. The three minutes he was with us as I got to watch over his lifeless body before he was rushed at full speed to the intensive care area are without doubt the worst three minutes of my life.

Physicians and midwives came and went, no one knew what was wrong with him. After perhaps an hour we were told that apparently little Oliver had bled to being nearly dry. This is still a huge mystery. No internal bleeding was found and none of his blood was found in Jill's. There are a number of hypothesis, but none have been proved and at this stage none might be provable. Physically, other than blood loss he was a beautiful 7lb 12 oz baby, 19.5 inches long. There are links to pictures at the end of this message.

How sick he was was an utter horrifying surprise to everyone. They had measured his heart rate during labor and Jill had been for a check up on the Tuesday prior to labor and all indications was that this was a text-book strong healthy baby. As a result of the huge blood loss they finally transfused him with blood, but it took a long time in coming and as a result significant brain and other organ damage was seen as inevitable.

Oliver started to breathe, but with great difficulty due to the aspirated meconium and other probable organ damage. His breathing was fitful and intermittent. Later the pediatrician told us that the chance of his survival was greatly in question. We feared as much although didn't know at the time.

At 7pm on Friday the pediatrician shift changed, and the new doctor decided that SF General could not provide the level of respiratory care that Baby O looked like he might need. As such he was rushed to UCSF where they have a much higher level of intensive care. I travelled in the ambulance, Jill who was still physically incapacitated followed in another ambulance, in what seemed hours later. Of course if it could go wrong it did and even the ride over we had some initial problems with ambulance air/oxygen/nitric oxide supply and poor Oliver got cut off from air once again - although this time just for a minute or so, but again it was a very long minute indeed as the team scrambled to reestablish the equipment and his breathing.

There were no wards in the UCSF Intensive Care Nursery (ICN) so we stayed seven floors down and one hospital over in the liver transplant ward that night, sharing a room with an elder black lady, Ella, who turned out to be Gunsmoke fan and who listened to the show at full volume. Despite the cramped bed and loud room we fell into fitful sleep at about 1am Saturday after having made sure that Oliver was as comfortable as he could be with his dedicated guardian angel nurse Andrea, looking over him.

Olivers breathing was of such concern that they intubated him, ie pushed a breathing tube down into his tiny lungs with a respirator on the other end. Its hard to see your baby attached to so many tubes and wires, but these were keeping him going. We could reach out and touch him, and his tiny body trembled and shivered and his mouth continued to quiver. But already he was getting a bit grumpy and kept trying to pull the tube out of his mouth. We were heartened by his lack of wanting to be a good patient, but they gently sedated him for his own good.

We woke on Saturday to find that things were getting better. The respirator was turned down and Oliver decided that he would give this breathing thing a go. He was getting quite the hang of it much to everyones delight. He also started to open his eyes and make some eye contact with us, although he continued to tremor fairly consistently. The tremor in his mouth was abating.

Saturday, Ella moved to another ward, so we had a room to ourselves and never found out what happened to the Indians. Oliver pee'd so there was some hope that his kidneys would be OK. We had complete 24 hour access to The Vole, and would check in regularly to see how he was doing. Jill started to pump and her milk has come in wonderfully, she is now quite the regular milk cow.

Oliver was very docile, almost always asleep, didn't cry, but was starting to take control of hands and feet which was very heartening. He was doing so well that by very early Sunday morning they removed his breathing tube.

That meant on Sunday we could finally pick him up (we hadn't even been able to hold him until now) and kiss his sweet little pouty lips. For a guy who was semi-concious and not really in control of his faculties, he has a lot of character and expression. Jill got pulled into a bunch of conversations to do with her care which meant I got to hang out in a rocking chair for a few hours with Baby O on my bare chest, skin to skin. I told him a few stories. Let me tell you he's a tough audience. The slightest deviation in pacing or back story and he is out like a light. It's tough having a baby on you who has two or three IV's in him and a number of other tubes and lights and bells hanging off him, but despite this it was the most wonderful few hours of my life. Jill also got to hang out with him later. She was definitely on the mend and starting to recover from the various meds they had put her on, but still in significant pain.

We also found out that on Sunday Oliver was eligible for a research program sponsored by NIH and being run by UCSF that deals with babies with brain damage. There is a super fancy MRI machine that is available in only about four hospitals in the world and a guy who reads the scans who is apparently one of the top two guys in the country. To qualify a baby has to have an APGAR score of under 5. Oliver, clearly keen to get in and scare the bejesus out of us, scored 3 at minute one.

The MRI scan was due on Monday at 10am. We went to go see him being prepped and it was the most alert that we had seen him, eyes open, intermittent eye contact and the tremor getting less, the mouth tremor all but gone. Unfortunately he had to be completely still for his MRI so they had to sedate him again. At this point Oliver is outpunching Keith Richards for morphine consumption over a three day period. We couldn't be prouder - he really is going to settle right into living in the Haight, we can tell.

Post the MRI we saw Oliver again and he was pretty out of it, as you might expect. We went to change his diaper and he had pooped a huge amount of meconium. Again all good news. The doctors had run a bunch of ultrasounds on his head as well and there seem to be no cranial bleeding. In addition, all the poop implied that his liver and other organs were doing great, which was a huge relief.

Sunday we got moved to the same floor as Oliver which was a relief as we could now more easily wander down the corridor to hang out with him and then wander back to crash for a few minutes. Plus the nurses we got were used to dealing with grieving frightened parents and unlike the nurses on the ninth floor didn't keep coming in every few hours to tell us what a gift it was to have children and how healthy and hearty their own children were. Which was not helping us one little bit.

However we were still under the gun of being discharged as Jill was recovering well. Of course, as she was her typical self and being a complete trooper and not complaining they thought she was doing even better than she probably really was. They had told us Sunday morning they were going to kick us out. They told us Monday they were going to kick us out. The stress of not knowing and not wanting to leave Oliver was really weighing on us. But we camped out by his bedside in the West Wing (which is where the sickest babies of ICN go) so it was hard for them to evict us.

Olivers reflexes were coming along although were somewhat muted. On Tuesday we heard what we already knew deep in our hearts. Oliver had suffered brain damage. Although the degree of the damage was still not known. We also heard from the Pediatrician who had saved Olivers life (Colin Partridge) that perhaps Jill had suffered a placental abruption, where the placenta peels away from the uterus wall. That would explain the constant cramping and the bleeding and also gives a theory as to where the missing blood went, although not why he came out pink and went blue. Knowing this was preventable and that there was definite brain damage although not the extent really brought us to our knees. But fortunately, Oliver hadn't heard the news and decided to gulp down 25cc of milk against everyones expectations, which was fabulous. Unfortunately since then he has been a pokey eater, eating less and less and taking longer and longer - his follow through isn't the greatest and there is some debate as to whether this is his condition or a family trait. He also got promoted to the North Wing where the less sick ICN babies hang.

Wednesday we were told that the brain damage instead of being moderate, as we were told on Tuesday (on a scale of mild/moderate/severe) was actually mild - according to this supposed research guru Barkovich. Although overall his condition is moderate, again more in a bit.

A quick overview of the MRI. There are three parts to this diagnostic that make it fancy. 1) The standard mechanical part that looks for regular damage. What makes the UCSF site special is that they have an experimental tiny MRI Cage that goes around babies heads' that has been custom made for them by GE. In other hospitals and for most cases at UCSF they put babies in an MRI for regular big headed adults, but that reduces the signal to noise ratio and doesn't allow as crisp a reading. There are just three of these experimental cages in the world right now. 2) A test for diffusion. Nerves are covered by myelin which using the wiring analogy is the plastic insulated coating surrounding the nerves. Low myelin ie compromised insulation means high diffusion of nerve messages as the nerve fibers cross back and forth and that means slow reaction times which is bad. 3) A test for lactic build up. As cells are starved of oxygen lactic acid builds up, which is why your muscles ache after working out hard (so I've been told). By looking at the lactic level they can tell when the starvation occurred at up to nine days, all very CSI.

The MRI results we got back were, in reverse order a3) Lactic levels were normal. This means the starvation occurred more than nine days before the MRI ie more than a few days prior to birth. Either that or the study (experimental) is a load of cock. However the researchers didn't take kindly me calling into question their methods and techniques and suggesting there might be error into them. I need to consult Dr Google about this to find out more. This is yet another puzzling piece, if the loss occurred earlier why did Jill feel nothing, why did all the tests for heart rate and fetal distress come back negative. Why did O come out pink. Why don't you ever see baby pigeons? Lots of unanswered questions.

a2) Diffusion came back normal, ie nerve development is fine. This is pretty important (I think). My apologies for the ham-fisted knowledge of neuroscience (I know some of you are experts) but I'm just picking this up as I go. But apparently we have at our core gray (or if you are English grey) matter, thats our lizard brain stuff. Fight Flight the other F (fun). Then surrounding that there is a big layer of white matter. This is a the plugboard that allows different parts of the brain to talk to itself and the rest of the body. Then on top of that is more gray matter which is the cognitive bit that makes humans humans. So the plugboard seems to be in OK shape.

a1) Now the bad news. We have damage both at the core gray matter (lizard brain) and at the outer gray matter (human brain). Fortunately the damage is not in the occipital zone, so Oliver can see, hear and has a sense of touch. But it is in a region that affects cognitive abilities and reasoning etc. The damage at the core level might also be responsible for his lower body stiffness, he has too much "tone" in his thighs.

What does this ultimately mean. Only god knows, but it will mean a couple of things for sure. He will have some challenges with mobility. Its hard enough to crawl. If you can't bend your thighs, it gets much harder to propel yourself around. Is it overcomeable? Can you be trained and get OT to help you? Maybe and Yes. Again all to be determined. What about cognitive abilities, will he ever grasp math, will he ever be able to spell his name? Again we don't know. The designation for "mild" gives us hope, but who knows how that is arrived at. And remember 48 hours ago it was "moderate". Could it swing back to a bad situation? Possibly. Could it get better? Possibly. Could the Democrats ever field a viable candidate? Possibly. But sadly unlikely.

OK so to next steps for Baby O and for us and what you can do to help, and of course links.

Baby O He will get another fancy MRI (and yet more morphine, someone get that kid a guitar and recording contract) next Monday to see if those spots on his little noggin are getting bigger or smaller or are steady. He needs to learn to eat before he comes home. Right now its pretty discouraging. He is eating less and less and seems to have forgotten how to coordinate the suck and swallow. But the main doc on the ward has high hopes, and says it will take him some time but they have patience and space and want to get him up to speed. They are going to give him a fancy eeg brain scan soon to see if there are any seizure activities occurring. His dose of antibiotics for meconium aspiration is being dialed down and he should be off of that by the end of the week. Right now, he has a little yellow tube that runs up his nose and into his tummy. We offer him 60 cc of breast milk for half an hour every three hours. Whatever he doesn't eat gets poured into the tube and into his tummy. If worst comes to worst, they will put a little tube in his tummy so we can take him home. But we are really hoping to avoid that. We will keep you posted. But in the meantime, although he is a bit docile, he seems very happy. Not in pain. Wakes up to pout, smile, and look at us intermittently. Doesn't cry much. Isn't suffering seizures that we can detect currently (a major side effect of brain injury). He is, in short, a happy child as far as we can tell.

Us Jill is making physical strides in recovery although is still hurting, walking slow and has other expected physical ailments. She might also have the beginnings of a cold. As was noted earlier she is producing enough milk to impact commodity prices. Mentally we are both pretty shattered, as you might expect. And as Jill has to get up every few hours to pump milk which takes upwards of 40 minutes her sleep pattern is a disaster. Which would be expected with any new mother, but is generally counteracted by the reassuring knowledge of having your little tyke safe and sound in your arms.

What you can do. Most importantly, we want you to go home and hug your children. If you don't have one, then find a friends and hug them. We have been blown away by peoples immediate and unconditional offers of help and love and support. From the fabulous folks at my work, AlphaDetail, who sent us flowers during some of the bleakest moments, to the innumerable text messages of prayer and thought, the ongoing offers of help and visits. All have been wonderful. All have been overwhelming. You guys are incredibly special and dear to us. We definitely need you, but we don't know quite how yet.

Maybe a reference to a good place to get a massage, maybe a home cooked meal at some point. For right now, we are pretty much camped out at the Intensive Care Nursery, with occasional trips home to replenish. Please don't call us at the ICN as there are many many sick babies and its inappropriate to have the phone constantly ringing. And we are frankly sick of the whole story and don't need to perpetually relive it. Text messaging works as its immediate, quiet and concise. But again please don't take a tardy response personally. We are overwhelmed and our focus is on Oliver and the reports we get from the medical team there. And a little bit of self care from time to time.

When we finally get back into the social swing, we really appreciate your concern as to how to deal with this. We don't want to create this topic as a big no no as its important to us, evolving and fascinating. But we don't want it to be the only thing we talk about for 16 hours a day. We are likely to burst into tears for no apparent immediate reason. So please bear with us as we find our pace and balance and integrate this into our lives.

Links. More pictures of Oliver Valentine can be found here (yeah, every kid should have a middle name that they hate, and we didn't want to disappoint) http://www.flickr.com/photos/georgecorrigan/sets/72157594206126157/. To see descriptions, you need to click on each photo, slideshow hides the text. Note some photos were taken on my Treo, so the quality is a bit low. Also a lot of low light, non-flash shots - so a bit blurry.

More white papers about the MRI are available, but they are building out the website so not all the links seem to work. But you can check it out here http://babybrain.ucsf.edu/

We've tried to get to most people in our address book, but please feel free to forward this to anyone who wants to know what is going on and we have inadvertently missed.

Again, we thank you from the bottom of our hearts for the love and concern and outpouring we have received. We wouldn't have made it this far without you. We are still far from out of the woods. And as Oliver slowly progresses we are fully expecting it to be frustrating and painful in parts. But we know that with your support and good cheer his journey and our experience will also be rewarding and joyous and loving. Thank you for being part of his family and making him feel welcome and us feel supported.

Much love George and Jill

Oliver Valentine - An Update (March 4, 2007)

Thank You

So first things first. Thank you. Although 'Thank You' doesn't really seem to cover the gratitude I feel from the incredible response from the last email. We were in dire need, and to say that people came to our aid is a monumental understatement to the incredible outpouring of emotion, support, prayer, stories, gifts, phone calls, tears, hugs, love, food, understanding and compassion.

The incredible good karma you've created has made me feel more connected and human and loved than I could have dared to believe. You have carried us fully and unconditionally – as Dickens almost said, its been the worst of times but you've made it the best of times. Thank you.

Every touch has moved, inspired, encouraged or calmed me one way or another. I've received several hundred emails and I've got around to replying to about seven, for which I'm very sorry. I hope to get to them all in turn, but please know that every email, visit, phone call and text message has made a difference and has helped us through this really tough time. Thank you.

I know some of you offered up prayers and thought good stuff, and didn't bother with mere mortal communication. Don't worry, all that spiritual energy got through too and I appreciate you mightily beseeching the powers that be. Some prayers went out to the standard white males like Yahweh, Our Lord and L Ron Hubbard. But above and beyond that the Vole has had blessings (the hippies), incantations (the witches) , smudge sticks (the native Americans), crystals (the new agers) and whisky/tequila (the Catholics) sung, poured, rubbed and wafted either over him or ingested nearby.

Some believe in gods. Some in science. Some in leprechauns. Its great to know that whether there is a heaven, or a big rainbow with a pot of gold, or it all just goes dark at the end, you've got this kid covered. He's needed it. Thank you.

So is it working? Well yes. In parts.

The long journey home

And so to the update. When we last left him, our hero aka Oliver Valentine aka The Vole, was stuck at the hospital. Due to a hard birth, and a suspected placental abruption he had nearly bled to death and had suffered "moderate" brain damage to both motor and cognitive parts of his brain. Although Joe Lieberman might not know what 'moderate' means, the docs explained that the damage to his motor center was giving him very stiff body and limb tone which would limit his ability to crawl and probably prevent him from walking. The cognitive damage would be unassessable for a couple of years. It was cold comfort that Bush in the White House was proving half a brain isn't a limiting factor in America in the new millennium.

The most immediate issue was Oliver's eating, or rather lack thereof. The Vole had apparently over-heard that one never be too thin or too rich. Realizing he'd missed the San Francisco real estate boom due to his parents poor timing he decided to focus on his figure and was very coy about sucking down the breast milk Jill lovingly and painfully pumped for him. To bypass this fastidiousness the doctors placed a yellow feeding tube up his nose which pleased Oliver not at all and he dedicated his early coordination efforts to pulling the damn thing out.

The doctors, realizing this was a baby not easily thwarted, removed the tube but darkly warned that Oliver needed to chow down 60cc of milk every three hours or a feeding tube would have to be inserted directly into his little pink tummy. Suitably alarmed Jill and I set to coaxing Oliver to eat. We took shifts and stayed bedside with him 24 hours a day, teasing a tiny bottle past his pouty lips, disapproving gums and uncooperative tongue. At least Jill and I could trade off shifts, grabbing some sleep in hospital. Well I thought, it could always be worse.

And then suddenly it was.

Jill got very sick with a particularly nasty feverish flu, and was promptly banned from the hospital. She was exhausted and now forcibly separated from her child, a horrible position to be in. I was now on double duty at the hospital cycling back home every few hours to pick up breast milk and report on news and bring food to a distraught Jill. It was exhausting, but at least I had the sanctuary of my apartment to crash out in for a few hours now and then. And Oliver was starting to tentatively eat. Well I thought, it could always be worse.

And then suddenly it was.

Post diluvium

My upstairs neighbor, a fabulous guy with dreadful plumbing, lent his apartment to a couple from the UK who left a bath tap running. The first clue something was up was gallons of water suddenly pouring through my bedroom ceiling. My guess is that someone prayed to a Greek deity (as I said, the prayers have been eclectic) and it got routed to Poseidon whose answer to every problem involves water – its really not his fault; polytheocracy breeds domain specialization. If all you have is a hammer, every problem looks like a nail; but we'll get to Thor in a moment. Poseidon's bailiwick is of course all things aquatic, in this case waterfalls of Niagraean proportions. The water poured through light fixtures, out of switches, and down the walls. Paint started peeling off the ceiling and walls in massive clumps and in a little less than an hour my apartment became unlivable with the rotting smell of mould everywhere (yes that's the British spelling of mold, sorry some things just look better with U, plus when it comes to dark dank unlivable conditions, the British know a thing or too about that).

After beating a hasty retreat I called the landlord, who sent around Leo, a lanky 50 year old problem fixer with a moisture meter and a sledgehammer. Leo assured me it was fixable. 'Leave it with me' he said. 'You focus on the baby' I biked off to the hospital with the latest supply of warm breast milk turning my place over to Leo and his extensive experience. "Help yourself to the beer in the fridge" I said. Well I thought, it could always be worse.

And then suddenly it was.

When I got back to the apartment Leo had punched huge holes in the ceilings and walls of the different rooms ostensibly to assess damage and start the drying process. But Leo was more enthusiastic than prudent with his sledgehammer; Thor had decided to make an appearance after all. Leo/Thor (anag Hole Rot, go figure) neglected to put sheets over any of the furnishings or even mask the holes he was making, he had just stood in the middle of my apartment, a beer in one hand swinging his hammer with the other. Now most of my 1930s apartment was covered in a lung clogging dust that looked suspiciously like asbestos. Elsewhere the asbestos/dust had mixed with the brown mildewy water to form a rancid cement that adhered to musical instruments, bedding, furniture, clothes. "it's the worst case of damage I've ever seen in a non-carpeted place" he said nodding at the damage while helping himself to another beer from my fridge, "I've been doing this for 25 years". I couldn't help but reflect that in 25 years Leo/Thor must have destroyed more people's apartments than Hurricane Katrina. But all I said was "I think you've effectively fireproofed this place with all this asbestos". Before I could stop him he said "well it could always be worse" Right at that moment the wall that held the bracket that held my beautiful, mountain bike, gave way and wall, bracket and bike crashed to the floor. "Cheers" I said, and grabbed a beer.

Home again home again

Back at the hospital things were looking up. Even though Oliver was not chowing the full amount every three hours the doctors decided that he was essentially a well baby and should go home. Jill was now recovered sufficiently so we went together to the hospital to pick up Oliver. I had a nagging feeling that they had made a terrible mistake putting us in charge of a baby, shouldn't we know more? All they showed us was a video explaining baby CPR in which the first confusing step was to call out to your child "baby baby, are you OK?" But it was never explained what was considered a satisfactory response from a two week old baby.

So after two long weeks we finally walked out the hospital with our kid. Much to my amazement no alarms went off and no one chased after us demanding we return The Vole to a place where there were professionals. What sort of irresponsible behavior was this? Did they truly let everyone just waltz home with their baby armed with nothing more than a receiving blanket, diapers and rash cream. It was clearly madness bordering on negligence to put a baby in our charge but with any old lunatic allowed to raise a kid it did start to explain the messed up state of the world. Hopefully we could better than Britney.

We went back to Jill's apartment as they had now moved in a dozen fans and dehumidifiers into my apartment – the noise and moisture making my place feel like the main runway at Miami airport in July. I checked messages, and there were still none from the hospital demanding our return. "Well I'm glad that's over" I said "We won't be going back there for a while". I'm almost glad I didn't know how wrong I was going to be – otherwise I would have just broken down and cried right there.

The next few days were perfect. Jill and Oliver and I all curled up, not really sleeping, not really waking with a stream of visitors bringing well wishes and food and gifts for the boy. Day three at home we realized we were getting a little cabin fever, so I hoisted Oliver over my shoulder, a position he still seems to favor, and we headed for our local noodle house. Oliver had spent most of his life in a hospital so hearing the clatter of the kitchen calmed him – reminded him of the preceding two weeks chaos. To this day he is happier being up and out and about in places where there is noise and activity.

Beyond the Pale

At the end of the first week out, Oliver's third on the planet, we took him to the pediatrician for a standard check up. Our doctor wasn't there, so we got the stand-in med student, Tai. "He's kind of pale" we said. Looking at me Tai said "It looks like he got the Irish side of the family tree". "Can we get a blood count?" we asked. I asked this not only because he seemed Goth white, but also because his blood counts at the hospital had been kind of low. "No, we'll do that in a couple of weeks" she said. It seemed wrong, like quite a bit of the contradictory medical advice we had received to date, but once again we demurred. Once again we were wrong to.

I had a quick business trip the following week to New Jersey. I got on the plane on Tuesday, and when I got off 6 hours later my voicemail was filled with messages from Jill. She and Oliver were back in the ER. Jill had decided to take O in to the pediatrician to check on some goop that was in his eye that didn't seem to be clearing. Our main doctor, the fantastic Emily, took one look at him and ignoring the minor eye problem ordered immediate blood work while Jill waited. Oliver's red counts were so low the lab didn't believe it and redid the tests; technically Oliver should have been in a near coma. The shocking test results were confirmed, and Jill and Oliver were rushed back to the Intensive Care Nursery for an emergency infusion. I joined them the next day.

It turns out that Oliver suffers from a very rare, but very profound anemia. The major suspect, still not proven, is Diamond Blackfan Anemia, named after the two doctors that uncovered it. It is genetic, RPS-19 is implicated (whatever that means). Its rare about 50 babies a year get it, there are about 1000 people worldwide with the disease. There is no known cure. Oliver does not make red blood cells or rather he makes them but somehow they are on an early death cycle, so none make it into the blood stream. As such, to stay alive, Oliver needs to be transfused every three weeks or so. Each transfusion takes a day as they do a specialized match to make sure there are no blood reactions, and then they have to pump the red cells in slowly so as not to overstress his heart.

Whose line is it anyway?

About two months into his life Oliver had a very hard day when the doctors could not find a vein that they could use for the transfusion. A combination of a healthily fat baby, narrow blood starved veins, and Olivers small size meant that he had a miserable day where a series of half a dozen doctors each stuck four or five needles into him trying to hit a vein. Finally we begged the doctors to put a permanent intravenous line into Oliver to stop the incessant puncturing which was wildly distressing him, and us. The doctors placed a Broviac line which is a central line that has an entry point into the middle of his chest and runs up into the major veins in his neck. The good news is that the Broviac means an end to the heel sticks that they used every week to draw blood from his feet. Transfusions are also now painless. The bad news is that The Vole is no longer water proof, as he has a hole in his chest, so can not take an immersive bath, joining a long illustrious line of famously stinky Irish men (Dedalus claimed he took a bath once a month, whether he needed to or not, Bob Geldoff isn't much better). It's a shame as we found early on The Vole really likes thrashing around in water.

The biggest challenge is the dressing around the chest hole needs changing once a week. Friends know that I am more enthusiastic than precise when eating, and with Oliver the apple hasn't fallen far from the tree: as the applesauce can attest. Trying to keep a site sterile when its constantly being covered in food and saliva (Oliver's not mine, I hasten to add) is hard. When the site gets irritated Oliver always figures out how to get hold of the line and give it frustrated pull, but so far the line has held up amazingly well. The wound dressing is complex with at least half a dozen components to make it work, but Jill has figured it out and can now dress the site better than most of the nurses that come by to check on him.

There have been a few issues with the line nearly getting infected which have landed us back in hospital, one of which grounded us for a week of emergency antibiotic infusions. But generally we are getting into the swing of flushing his line once a day and changing the dressing weekly; although both our apartments look like a scene out of MASH as there are boxes of syringes, medicine vials, ointments and wound care patches everwhere.

The video montage bit where we go from week four to month seven

And so the months have been roaring by, he is now seven months old. And Oliver has been growing well, he's now over 15 and half pounds. The motor deficiencies that we were sternly warned about manifest themselves in a slight shake in his hands, but he is one strong and determined kid. The physical therapists who work with him repeatedly shake their head when they look at his progress and then at the medical charts. "It doesn't seem possible", they say admiringly, watching as he grunts and groans onto his knees and does a good imitation of starting to crawl. "If anything he's somewhat advanced, we need to slow him down". He may yet be a bit gimpy in his gait, but it seems almost assured that he will find a way to propel himself around. Its fortunate that he has a will of iron, even if he has relentlessly non-ferrous blood production.

We had an early on interaction with the neurologist who asked if we had noticed anything wrong with Oliver.

We said, "there's the anemia."

He said, "well other than the anemia."

"There's the limb stiffness", we ventured

He said, "other than the anemia and the limb stiffness."

"Well there's the reflux; he throws up quite a bit of food."

He said "Other than the anemia, the limb stiffness and the reflux, anything else wrong?"

"Well there's the tongue that seems to curl a bit, we're worried about speech and eating"

"OK other than the anemia, the limb stiffness, the reflux, the tongue curl, anything else?"

"Oh well other than that he's a perfect specimen!" we said somewhat exasperated.

Then he said ""Well its just that I think Oliver might be blind"

"Argghgghghghghghgh!!!!!!!!!!!"

Like much else we've been told by the doctors this turned out to be wrong. When he chooses to Oliver focuses in on people with a laser like intensity. He can coordinate picking up objects and most importantly, at least to him, putting them in his mouth. Cognitively its still hard to assess his level of processing, but he his babbling in a concerted manner, shows interest in his surroundings, loves his toys, is crazy about dogs and has a wonderful funny laugh that will melt your heart.

If you met this baby in the street you would be struck with what a beautiful, incredibly strong and alert boy he is, you would not guess at his history. You might also think, hey what's this baby doing in the street, is this one of Britney's kids?

Jill spends almost every waking moment time managing his trips to be transfused, participating in his physical therapy work, working with the neurologists, doing medical research on his conditions and running him to the pediatrician and the assorted specialists who are involved. Oliver is beyond a full-time job and Jill has taken it on cheerfully and is a fierce devoted advocate for her son. He owes a lot of his progress to her unflagging enthusiasm, faith and skill.

And my neighbor made a very generous donation that helped get the apartment painted and back to its former shape. Sadly that paint has once again peeled, and there are some ongoing remnants of the flood, but my place is now more livable for me than for mould, which wasn't the case for quite a long time.

Check Please

Between the emergency room visits, the transfusions, the birthing - Oliver is now a million dollar baby. And it is almost entirely picked up by Californias Medicaid program, Medi-Cal. We pay for some additional physical therapy work that we believe is helpful, but the state has picked up the tab for the MRIs, the blood, the ongoing PT work. We would be beyond bankrupt without this support. I keep waiting for the other shoe to drop and to get some astronomic bill in the post, so I make sure the car is stocked with a tank full of gas, a trunk full of diapers and a map to Mexico that avoids the major freeways. But so far so good – the Feds have not come knocking. I've been paying taxes for what seems like forever, and I'm generally peeved that I'm simply helping buy bombs for the military or paying for ineffective road repairs. Now I realize that a little of the money goes to helping the surprising number of babies that are in need. So I don't feel so bad about paying taxes any more. I want to especially thank those of you who are American tax payers for doing your part in keeping Oliver alive. Without your help, we couldn't do this – I hope that thought helps a bit come April.

To Infinity. And Beyond!

So whats next? The first thing is to confirm that this anemia is Diamond Blackfan. Oliver had a bone marrow biopsy a couple of weeks ago. Apparently the results are not due back for six months. I tried to point out that on CSI they can do genetic testing in less than an hour, including six commercial breaks and they always get their man. The hospital was not impressed. Apparently isolating the genes is time consuming and expensive. And given the rarity of the disease, lots of people all over the country and even the world want to do their own bit of double helix dicing and splicing on our boy. So six months it is.

Meanwhile Oliver will get transfused every three weeks or so until he is one year old. At that point they will give him small doses of steroids – although no one is quite sure how the drugs work on this disease. If you saw how strong this kid already is and have watched The Hulk you'll know that that giving him steroids seems to be asking for trouble. There's a 50/50 chance they'll work, and about a ten percent chance he'll get huge and green and run through San Francisco and have to be brought down by helicopters. If the steroids fail and he ducks the helicopters, we'll go back to transfusions. One day we may consider a bone marrow transplant, although transplants are seen as very risky/expensive/painful so are currently being down played as an option.

So what is Oliver's prognosis? Unfortunately not great. Life expectancy for DBA kids is somewhere between twenty to forty years old. It turns out that all those transfusions are hard on the body. The very iron you need turns out to slowly kill your organs when you get it transfused, which if you can't resist puns and play fast and loose with definitions (yeah I'm talking to you Alanis Morrisette), might be described as iron-ic. Other risk factors include increased incidence of leukemia and cancer as the mixing of the bloods mess up your chemistry and to add insult to injury the disease also precludes chemo from being an option for cancer treatment.

When the going gets tough, the tough get philosophical

There are a few reasons to be cheerful here. First and most importantly the medical community have been very wrong on this boy several times before, so the racing certainty is that this prognosis is wrong too. Second, the technology is getting better every day and who knows what they will be able to cure in twenty years, twenty years ago it seems they were practically using leeches. And third with such a small sample of people with this disease (the DBA registry is 420 kids) no one really knows much about it - the chance of being an outlier is pretty good. Of course that could break either way, but this kid is pretty determined so I'd bet he'll be on the right side of the bell curve.

But having said that I don't want define Oliver's happiness and success in life on him beating the not inconsiderable odds. We all know it's the quality of the life not the length of it that makes it worth living. Sometimes we forget, but I'm lucky to have Oliver there to remind me about what's important. I hope that in whatever time Oliver has with us he will pack a lot of living in.

People are of course the most important element in any life and I've been extremely lucky to find amazing and exceptional people. Because you are getting this overly long note you are one of those exceptional people and a friend of mine and so in Oliver's life. (nb and if you didn't get this note either directly or in the first tranche, please don't take umbrage, you are still in the gang. My address book is not quite as complete as it could be, and my systems aren't set up for large email sends - my email admin ability is no reflection on friendship. This is also to say, if you know someone who didn't get this note and you know should have, feel free to pass the message along). My exceptional friends are the largest gift I have for The Vole. Thank you for being part of that treasure. Some of you I see regularly, some of you I haven't seen for a long while but I hope that our paths will cross again and you will have a chance to say hi, and visit with him – even if it's for a little while. Your presence in his life, even those who are remote, gives Oliver a very rich life. I also hope that I can encourage Oliver to live fearlessly and to follow whatever dreams he may have. It is always important to appreciate each day, quadrupley so, when you have, perhaps, four times fewer of them than most of us. I'm hoping I can provide a life for him where he will have the opportunity to travel a little and see this wondrous and diverse world that we live in. I know that some of you have donated to a fund for him to help him grasp whatever opportunities might come his way. Thank you for enabling his life this way. All you need is love. But a little cash certainly helps, I think John if not Yoko would agree.

All of that is of course the future, and unwritten. For right now Jill and I have our hands full with our beautiful, willful, unique child. Of course neither of us anticipated the severity of issues he would have, but even with that we feel blessed. He's a cool kid, a blast to be around, a little dynamo of seemingly endless energy that needs almost no sleep to fully recharge. Every day he does something that surprises us, amazes us, delights us or scares the bejesus out of us. And we wouldn't trade that for the world. He is family and loved fiercely and absolutely.

Run on the Bank

I would ask that if you would like to help, that at some point, if you are able, you give a pint of blood to your local blood bank. Oliver would be dead by now if not for the selfless blood donations of others. These angels we cannot thank directly because we don't know who they are, but they make possible each day with our son.

We are taxing the system mightily as we continue to consume a considerable amount of blood. I would love to know that we were helping replace the blood we take so that other parents can also have the opportunity to watch their children grow, so that others aren't deprived by our urgent ongoing incessant need. I have to confess, the benefit of blood drives always seemed abstract to me. I knew they were a good thing to do, but where does the blood go, is it really that useful? When you meet Oliver you will see the benefit is both immediate and vital.

So in brief…

A picture is worth a thousand words, at this point we are nearly five pictures in – thank you for your patience. If you would like to keep up with Oliver in a more concise manner and see what is going on in his life, please check in at www.flickr.com/photos/georgecorrigan for pictures, which get updated fairly regularly. I'd love to see your comments, and if you have pictures to share I'd love to see those too. My intention is to periodically (say once or twice a year) update a blog for those who are interested. The blog will also save your inbox from getting jammed with any more long letters like these. The blog address is here http://olivervalentine.blogspot.com/index.html And yes, you are right, there is nothing much there now – but expect an update when he's a year old and we move to the steroids.

And so that's it for now. You know as much as we do. Hug your loved ones. And hug yourself too. Its easy to take for granted this thing called life. When you see how precarious it can be you realize how precious it is. You are precious and loved and your presence here is nothing short of a miracle. Celebrate that. I know I do.

Much love from all of us here.

George, Jill and of course Oliver Valentine.

Ps late breaking news, through a generous gift OliverValentine now has his own domain at www.OliverValentine.com. Right now there is just a link to Flickr, but we'll link other info into that as we get it.