6 months post-op Cardiology Clinic

We went to Seattle Children's Hospital for a cardiology appointment today. Wren had a chest X-ray, echo and consult.

I think that the appointment went ..... WELL!! The key words are "stable" and "hanging in there" and no procedures are needed for now. We are in a "wait and watch" stage with a follow-up in 6 months.

For those of you who don't know the background, Wren has Shone's syndrome with multiple problems in the left side of his heart, the side which pumps oxygenated blood to the body. The problems are mainly stenotic - which means that parts of the heart are too small which makes his left ventricle work harder to squeeze the required amount of blood through the obstructions.

The main areas we are watching are those repaired by Dr Hanley in November 2008: aortic valve and sub-aortic outflow tract. This appointment the gradient across these areas was stable. That is very good because in Shone's syndrome the blockages tend to be progressive but if Wren reaches a stable stage it could be a long while before he needs valve replacement surgery.

Joshua, ever the optimist, asked whether Wren will still need a valve replacement in the long term. I added, like by age 8? Josh felt that wasn't the long term and he meant by age 18. Dr Lewin said that "it depends" but he expected Wren to have a new valve by 18. This rather shocked me because I feel that we are forever teetering on the edge of valve replacement and cannot fathom the slightest chance Wren could make it to his teens before needing one. I thought Dr Lewin would laugh at the question.

After listening to Dr Lewin's explanation it seems that IF the AV area remains pretty stable we will now be watching the balance between the obstruction and the performance of Wren's left ventricle. The LV is now mildly thickened (not noticeably changed from before) but over time it is likely to thicken to maintain the work of forcing blood through the AV area. Right now, his LV is "hanging in there".

His mitral valve is also "hanging in there" with no appreciable increase in obstruction. The valve is abnormal but not stenotic and the regurgitation due to its abnormal function is only mild.

Wren's chest X-ray was clear (no more pneumonia) and Dr Lewin said it was not bacterial in the old X-ray and did not look severe.

The weights and heights were a bit flat - Wren was 13.2 kgs 4 months ago and is now 13.6 kgs (approx 30 lbs). However, I think that the last measure was a bit optimistic. He is 75th percentile for height and 50th percentile for weight. I need to make sure he eats but its ok otherwise and the lack of real weight gain may be due to a faulty weight last time and/or his 3 weeks of viral illness before school ended.

Overall, we are very relieved and quite happy. Wren is not healed but being stable is a pretty good second.

*** Fireworks ***

After anticipating July 4th Fireworks for a month, Frost woke in the morning and threw up. He had two more bouts within the hour and was looking weak and apathetic all morning. I feel very guilty about this because I think it was probably a result of giving him celery filled with peanut butter with a December 2006 expiry date. It was a mistake to eat peanut butter from our basement "emergency kit" [mental note: check the expiration date of food down there]. He is now completely recovered.

Josh leaps away from a ladybug

Thankfully In the evening Frost recovered enough to go to the park with us and some of our friends who risked the pestilence to join us in some patriotic activity. As dusk fell, other kids and parents came down to watch until we were quite a merry band yelling "OOOH" and "AAAAH" and waving sparklers.


Alden, Frank and Trixie* with a Box of Fireworks they are NOT GOING TO LIGHT IN SEATTLE

July 4th Public Safety

ALL FIREWORKS ARE ILLEGAL IN SEATTLE

The Seattle Police Department and the Seattle Fire Department would like to remind the public that there are no legal fireworks in the City of Seattle.

The possession, manufacture, storage, sale, handling and use of fireworks is prohibited. Fireworks offenses are gross misdemeanors, punishable by up to one year in jail and/or a $5,000 fine.

In Seattle its illegal to set off fireworks and none are sold in the city. However, native american reservations around the city are established as Federal land which is not bound by city laws. As a result they are free to engage in various nefarious activities such as gambling, drinking, selling tobacco cheaply and ...selling fireworks. On the way back from Canada last week we stopped at BOOM CITY which is a vast parking lot of firework stands. There were at least 4 aisles of about 40 enclosed stands, shuffling crowds scuffling rising into the hot blue sky. Each stand was enclosed with a front counter and shelves to the ceiling FULL of fireworks. These are not the little tubes and crackers we saw as children. The majority of them are huge and villanous with names such as "Decimator" and "Big Artillery" and "Haunted Clown." Josh spent some time looking at the amount of gunpowder in a couple and said that it was significant. The large ones are $50-$100 EACH firework and are about 30cm cubes. I have no idea what you get for that amount by comparison with our little fountains and we didn't buy any that large.

Frost and a neighborhood kid run to retrieve a rocket

The Boys and Josh watch a rocket ascend

We spent $75 overall and our favorite one was a tube - slightly wider in diameter and twice the length of a toilet roll tube - into which you put one ball at a time (6 in the box). The ball had a long wick. When you lit it, it made an almighty CLAP and FLASH on the ground and shot up 100 feet in the air releasing a vast shower of color just like the commercial fireworks. We were lighting fireworks at a baseball field and another group was established at the opposite side. When someone on our side set off a big one, they answered with a big POP. We were out at the field for 2 hours and it was a most fabulous time. I hope that some of you can join us for a July 4th one year. We have fallen in love with the smell of gunpowder and next year we plan to buy some larger ones, even if we have to be outside Seattle to ignite them.

Wheeeeee!

One exciting moment was when the police came by. It was only after we came home that I learned the details of the fireworks regulations (it is illegal but not strictly enforced unless there is a complaint and / or damage). They cruised the park and then stopped in the lot near us and got out. They went over to speak with another larger group of young adults who were letting off fireworks near the playground. Tara and I quickly grabbed the biggest fireworks from our box and stuffed them in our handbags like crims stashing our goods. We were planning an escape route. Joshua continued playing with the small ones as our cover since we believed only large fireworks were illegal. Fred and Tara asked if I was a US citizen as if I might get deported for a firework felony if I was not! I have decided I should pursue my US citizenship this year as I can now hold US and Australian without penalty. Then, if we get arrested for Seattle fireworking I can remain in the US in jail rather than being deported to Australia.

Anyway, A* and F* were afraid the police were going to come and arrest us but they moved off and the 4 groups on the field continued unabated in our pyromania. Honestly, having fireworks out in the field like that is safe if you keep a wide radius and maintain firework safety. Its so open and flat that there is no danger of starting a fire. Plus, we could keep a safe distance and still observe. The only dangerous moment was when another man set off two rockets together. One went straight up but the other went sideways and shot towards us for a while. That was a good reminder to the kids of the danger of modifying them at all.

Dead Bicycle Beach, Vashon

There were a few negative tides while we were on Vashon and since Wren still rises between 5 and 6am we were early enough for camp each day to make a detour to the intertidal zone at dead bicycle beach. Wren was anxious at first - the rocky beach is quite slippery and weedy when the water recedes but he was very excited to find crabbies under the rocks and to look for golf balls (of which we found quite a few). Here is Wren looking for crabs.

We call it Dead Bicycle Beach because the on the bank above the beach people have 'dumped' old exercize bicycles and rowing machines. The kids loved to pedal the bicycles and look out to sea. Its a lovely idea and typically Vashon - quirky and spacious.

Alpacas at Breakfast
Back at our house we enjoyed feeding alpacas. There were a couple in the paddock in front of our house and they liked to wander over in the morning and look at us. I asked for some food and the elder of the two males would come over as soon as he heard the sound of the pellets being dropped. Wren was anxious about their big teeth and after one attempt at feeding said "they want to eat me" and would do no more.
Brothers
Frost and Wren have been fighting (literally) with the wooden daggers that Frost received from Pirate Camp and we bought at the Captain's Store. The joy was great but I felt that the danger of it ending badly was high so I have strung up a couple of pillows in the tree for swordplay. Wren is fearsome and I am glad he is not aiming at Frost because he has little to no judgment in his use of force or etiquette. Not facing him? Whack! Their ongoing combat games give me a deeper appreciation for this picture in which they are such sweeties.


Anyway, happy 4th of July! Frost was ill this morning so we have not had the planned gathering of friends. Thankfully, he is well enough for our personal evening firework explosion in the nearby park. We will be heading there soon.

Vashon, chocolate milk, free pizza

We arrived home last night and had a pizza delivery. I had chocolate milk in my morning coffee because there was no milk-milk in the fridge. Clearly, we need to do some grocery shopping really soon. The Pizza was a fun - I ordered from Pagliacci because we arrived home at dinner time and I felt like a treat. When I got out my check book to pay the deliverer said it was a FREE PIZZA. Its something about rewarding frequent pie-ers and "your number came up." Just to be clear, we are not frequent pie-ers from Pagliacci because they don't give us coupons and we are pizza cheapskates but now I feel a lot of goodwill towards them.

Move to Vashon?
Anyway, the 5 days on Vashon were lovely. I feel I know the island a little bit better which is good since the discussion on whether to move to the island continues. Despite his protestations, Josh's idea of planning is to look at online postings for 2+ acres and go "oh, what about that one." By contrast, I am a plodder. These are my questions:

If we bought 4 acres on Vashon:
1) Would the schools on the island be good enough for the kids?
2) How could I work and maintain the gardens / chickens / goats / vegetables / house / kids / lawns (ride-on-mowers) / community building?
3) With low vaccination rates on Vashon and significant body of water between us and SCH is it SAFE for Wren to live there?
4) Would I find sufficiently stimulating community and diversions on the Island?
5) Would I feel isolated?
6) If a bomb hit Seattle while we were visiting family abroad (so we survived) but all our money was in real estate, we would have no assets. Is it wise not to plan for this contingency?
7) Can we afford to own two properties and how much hassle is it to rent your home to strangers?
8) Do I want a goat I can't milk and my family won't let me eat and/or can I handle the breeding of goats for milk? If not, why have a goat? This seems effete. Just generally, why have livestock if the family won't eat our animals?
9) Would this kind of life lead to any change in habits for the kids and Josh or would they just sit inside our Vashon house and absorb their screentime and leave me with 10 extra chickens, a new goat and 4 extra acres of housework?
10) What would happen to our little menagerie while we went away on vacation?
11) Would our friends from Seattle visit or would we be starting from scratch?
12) What region of Vashon is the most amenable to my way of life?
13) How much would a place like this (on Vashon) cost? We have seen less developed ones for under 500K.
14) If the ferry was bombed or broke or something else occured to it, could I paddle a canoe across to the mainland in an emergency?

These are big questions. I do not have the answers but Josh continues to find lovely looking properties with tempting gardens. Further, I recall the happiness I felt in the Blue Mountains visiting friends yurts and cabins in the woods there.

So much of our lives is about sensible choices and doing things for the long haul but that can leave you defering life until you are too old to dig a ditch. Something about doing a thing because it is exciting and lovely and fun is good enough. We don't have to be utterly safe to make a thing worthwhile.

Pirate Camp Day 2 & Domestic Complaint

Frost and Eve were 'miners' yesterday. The team mined from a shaft and found small treasures and odd items like bones (from a chicken). They shared all the treasures and then could pick a few to take home in their gold treasure bags. Frost described the camp as "not really pirate camp but like an adventure playground for kids. Like you would build it just for kids. It has a lookout and its really tall and a mine and a fire." He explained they are not starving and eating bad ship food because the pirates are on shore at the moment so they get to eat better. He is loving wearing the same clothes every day and again checked that he could come to pirate camp EVERY YEAR. The only down side is that Frost says that kids come from all over so there is no point in learning their names because he will not be friends and never see them again. Hrmm. He is hanging out with Eve.

Meanwhile, back at our rental house things are comfortable but run down. The cabin is very clean and pretty with shiny pots and a well-stocked, brightly lit kitchen but still has has an air of vague neglect. We have a family of small brown mice who skid across the floor from the fireplace to the couch and kitchen and another couple heard and sighted in the bathroom upstairs. The house creaks and groans when you walk. At night you can hear its bones rearranging as you climb the spiral staircase up to the bedrooms and single bathroom. During the night the baseboard heaters make irregular clicking noises as if they are about to erupt with heat even though the thermostat is turned off. Outside, the umbrella is broken, the hammock is missing (but the rack remains to hang it in a big tangle with an old TV aerial) and we found a sensory table pictured on the deck out in the second paddock. Wren loved washing it down and playing with his cars in it. The path is overgrown with a large leafed prickly flower and Wren has learned the word "sticker bush" to remind himself to avoid the thistles guarding the drive. We are unable to collect chicken eggs because the new hens are not laying. The flyer in the cabin apologizes for this saying it is due to "raccoons" and the new chickens should be laying by late 2009. I fear this may be an annual thing since I found a flyer dated a year ago and giving the same message with another date. Perhaps they have stopped having chickens and didn't want to update the website?

My final complaint is that I have three bruises on my head from bashing into things in the kitchen obstacle course - the pot rack is mysteriously placed above the coffee-pot and toaster and the breakfast table is under the stairs so I often stand up to smash into a heavy metal object. Got to love vacations :) Still, this morning it is quiet and blue and I am happy at the small pine table looking out over the morning sun on the tussocked paddocks.

Last night we asked for some food to feed the livestock and then Steaky (the horned highland bullock) started following us around and nuzzling Wren's leg (much to his anxiety). We also visited some turkey's and walked down the lane to young heifers on a neighboring farm. The kids went swimming at the Vashon Pool and Wren jumped in as many times as he could in half an hour. Josh was very patient about being splashed in the face each time he caught him.

Wren is in an aggressive drawing and iPodding phase. He loves a game of animal match on my iPod - the animals make their noises as you turn over their card. He has become remarkably adept at remembering where the animals are to pair them. Frost and Wren fight over the iPod which barely feels like my toy at the moment. Whoever does not have it has a deep sense of injustice and expects some high reward for their suffering. I am fed up with it and threatening to withdraw all iPod priviliges from the U10 crowd.

Right now Wren is drawing. I shall scan some of the recent drawings because they deserve their own post. I have told friends (jokingly) that Wren is an artistic genius but I secretly think he is a bit of one. He draws and then writes "numbers" to say "WREN DREW THIS IT IS A DIGGER WITH BIG SNOW" or some similar title. He is now writing "big dump truck, little digger, man driving a digger, 'struction site cones, so many cones BY WREN" as the title of his latest artwork. The 'writing' looks like morse code. His art looks like abstract surrealism.