Synagis with Emla tomorrow

Tomorrow afternoon Wren is scheduled for his Synagis shot. I have a tube of prescription cream from our pediatrician which is to be used an hour before the shot so it does not hurt.

The information I received from the pharmacist was "apply 1 hour before the shot".

Ho hum.

I read the online instructions and it appears to be more complex. I am to apply ONLY to the spot that will be used for the injection. I should apply a dollup and then seal the area with an occlusive dressing so Wren does not mess with it. I should not allow the medication to be in contact with the skin for more than 4 hours - so effectively once the time for the shot comes I should wipe it off and clean the site so the cream is removed.

The shot is scheduled for 2.30pm-3.30pm

Wren naps from 12.30pm - 2.30pm

When can I apply the damn cream?

I guess I should try and get him to nap early, ask the nurse to confirm her arrival time around midday and then put the cream on based on the most current information. I also need to aquire a big bandaid that seals a bit better than our scooby doo ones.

Ugh. I wish it was a bit easier.

Its only goose poop

Last Saturday I dragged Frost and Wren out birdwatching at Union Bay Slough. I took Wren there a few weeks ago and have since decided Frost should be required to come on semi-family outings [semi-family is when I take the kids out] rather than hanging at home while Daddy gets his 9 hours after "I went to bed at 3am" shut-eye.

This has proven to be a great success and would have been even better if I had dressed Frost myself rather than allowing him to follow his own judgment. For both outings (to Farmers Market and Union Bay) we have had to return home prematurely to avoid death due to hypothermia. Last week, Frost did not bring gloves, a hat or another layer under his coat and I had to patch him up with my own fleece vest, a spare hat I found in the car and one Little Hottie hand warmer.

I let Frost use the binoculars to find birds and at first he found it very frustrating. He yelled:

Damn it. This is impossible. Its like trying to point a Wii remote at a bird!!!

After a while he finally saw the bird which Wren had been yelling at too. Wren was yelling:

It is him. Redwingbackbird. There is it!

"Its like trying to point a Wii remote at a bird!"

We walked around the trail to the waterfront where we saw 100s of over overwintering birds on Lake Washington as well as a group of 5 or 6 trumpeter swans. They were pretty hard to make out with our small binoculars but we chanced upon a birdwatcher with a Leica spotterscope who lowered the tripod almost to the ground to let Frost see through. With his equipment we could see the black beaks and glide of the swans among some Canada Geese. The birdwatcher was very excited as were some women cyclists doing some off-roading who also came over.

Frost was quite exhilarated with binocular use after getting some practice. I explained that birdwatchers were like spies - they had much of the same equipment (spotterscopes, binoculars, microphones and notebooks) and had to learn to be very sneaky and creep up quietly to see birds. He set off alone a great distance (which is where Union Bay Slough is great for kids - it is so open that they can go a fair way off alone without the parent freaking out - to stalk coot. Wren tried to follow and became bogged in the watery sedge so I had to recover him but despite some conflict over use of binoculars everyone had fun and felt important.

After stalking coot Frost and Wren observe a little pond.

Eventually Frost told me:

I have worked out a technique for using binoculars. You find a MARKER. Like I see that gazebo over there and I find it and I know the birds are below the gazebo so I look down and find them.

I congratulated him and said that was exactly what adults and professionals do.

We saw the following birds without even trying to do any identification or sneaking: Canada Goose, Great Blue Heron, merganser, trumpeter swan, coot, bufflehead, red-wing blackbird, robins, northern shoveler and a large hawk.
Frost explains to Wren about beavers and says they are "very lucky" to find this tree almost eaten up.

Wren and Frost both saw a beaver-gnawed tree which Frost considered a rare find. They were both concerned by the abundance of goose poop in the grass. At times, Frost refused to walk for fear of stepping in the poop and Wren stopped from time to time to ask:

What is this stinky stuff?

To which I had to give the reassuring answer of "its only goose poop".

What is this stinky stuff? Asks Wren while examining goose poop.

Hairdressing "in this economic climate"

My hairdresser let me go home like this today. Its called The Express Service and costs half the price for foils or a color. I love it. He did a cut AND color in 45 minutes and saved me time and money. I got to catch up on Top Chef while eating lunch on the couch with my glam look before my "ting-ger" went off for TIME UP and I washed it out.



Joey said he doesn't do The Express for people who want "a radical change in style" or "for timid people" who might be "anxious" washing it out themselves but otherwise its a great option.

Did I say "I love it?"

I like the color now too and I like not having a blow dry. I have always thought blow dries should be reserved for brides and television appearances but that is because I see no point in looking super sleek for 30 minutes when I don't blow-dry at home. The real test of a Mom in the Trenches haircut is that it can drip dry and still look super.

EDITED to add the AFTER shot.

Scoliosis in Heart Kids?

One of the best online communities for discussion of CHDs is the TCHIN List - called PDHeart. You subscribe and receive emails as singly or in a digest. The list is large and at times busy but I learn a great deal from other families, many of whom have older kids who have similar issues to Wren's. Of course, there is misinformation so I try and check our things which come up.

This week, an email came through my inbox about a girl who has had surgeries like Wren's - a thoracotomy repair of a coarc and a midline sternotomy for sub-aortic stenosis. She is now 14. Her mother shared that she has recently been diagnosed with scoliosis:

I took her to a Scoliosis doc on Friday, and they very calmly told me thatshe has non-rotational non-idiopathic scoliosis (10% upper and 20% lower in the
oppositedirection ) that's a result of her heart surgeries.

They told me that about 35% of the kids that have heart surgeries develop scoliosis.

I'm very frustrated! No one told me to watch for this! ... I have never seen this in anything I have read about CHDs, and...I feel that if I had known about this, we could have kept it from becoming this bad. [When] she goes back to her cardio ...I intend to ask about it then, esp.whether it really affects this many CHD kids. Its a specific kind of scoliosis - shifting out to the sides, not twisting of the spine.Apparently it has something to do with scar tissue restricting upwardgrowth of the spine.

I know that Izzy has scoliosis but I thought that might be something to do with Phaces, not OHS. I will be asking our pediatrician to look into this but meanwhile, has anyone else heard about this association?

Frost climbs a wall

The kids have been doing climbing as a school activity this month. Last year during this rotation Frost climbed about 5ft off the ground but he has been far bolder this year. He asked me to post some pictures of him climbing the wall last week. He wants Granny "and all the blog people" to see how high he climbed.





Frost has not been doing so much climbing out of the gym but he loves to throw his body into jumps and leaps and obstacles. Its amusing to watch Frost moving around U-village - it reminds me of footage of parkour where people move through the city environments like monkeys. He leaps off walls, crawls through bike stands and swings around trees. Wren has noticed this and copies him - kicking bushes, hopping and ducking under and around fences. I should film them sometime.

The Endless Fascination of the Zoo Penny Drop

At the end of our zoo visit yesterday Wren had 20 pennies to roll down the penny drop at the East Gate. He spent a long time sending them down.

Kangaroos in the mist

Seattle was covered by a thick fog this morning. After dropping Frost at school Wren and I went for a walk to a coffee shop until zoo opening time. I am trying to train local barristas to sell me a kiddicino as they do in Australia (foamed milk in a tiny cup with a bit of chocolate on top but no coffee). They consider it a novelty and give them to me free. Wren enjoyed his while I had a real coffee. Here is Wren bringing snuggle-bunny through the mist to the coffee shop, Fresh Flours.

The mist was still heavy when we reached the zoo. Wren told me he wanted to see the grizzly bears (aka "panda bears" in his words) and the 'nakes. The Nakes only open at 10am so we passed by the Australian exhibit while heading to see the bears. The bears were pretty dull - practicing a bit of hibernation by the pond - but the kangaroos were out and about. The misty field reminded me of camping at Lammington National Park (O'Reillys) at Green Mountain outside Brisbane. I would love to take the kids there sometime. The parrots come down on your hands and in the misty mornings the wallaby graze right by the tents. Bower birds display their blue treasures in the undergrowth nearby and there are wonderful trails AND a coffee shop. Argh! I really need to get out of town even if I don't make it to Australia next weekend :)

The otters were also very active. Wren was concerned because the otters had a Christmas tree in their pool and were using it as a toy, swimming under and around. Wren hoped that the otters would go into their den which has a glass front. He likes to see them go "night night". Today the otters looked as if they had just woken up. Here is an otter diving past the Christmas Tree.


The only part of our Zoo visit which Wren did not enjoy was when the lion started roaring just out of sight. I think we were at the back of his pen but the roar was alarming loud for Wren who refused to get out of the stroller and kept asking to "go home" for a while. As the roars receded with distance he check with me "lion not get You?" "Lion gone far 'way?" I reassured him the lion could not get out and get him. It is funny how he calls himself You. I hadn't really noticed until today.

Josh looked after Wren tonight while I was doing a school cleaning for our Open House tomorrow. Unfortunately there was another 'poop in the bath' incident which was distressing for Josh and Wren. The good news is that Josh was not IN the bath at the time although I remain suspicious of the few toys that partook of the poopy puddle.

Post on the theme of change

Its a funny time of year around here. Its cold (but not SO cold) and dark (but not SO dark). You have the feeling you 'should' be doing more but its about all you can do to keep the house upright and the kids fed. I have found myself turning off the news some days. Wondering and worrying about things from the plants that died in the winter-superfreeze, to what I should do to reduce CO2 emissions, to how real are Wren's chances of growing up to a healthy adult with the world intact around him. It is a time of visible change in many areas of all our lives right now (we all know that life is always in change, right? Right? [hit self on head for emphasis] but at this point it feels as if its hard to see where things are going. Its not so much the 'butterfly effect' but a swarm of stampeding buffalo spinning things around upstream and down.

The Economic Crisis has affected us to the point that I am trying to avoid vicarious spending (even at Value Village) and am postponing my big dental work for a month to eek it out into a happier budget. I have delayed my bi-weekly visits to The Therapist which I much enjoyed (sanity is less valuable than groceries) and we are not going to replace the vacuum cleaner nicknamed Airforce One for its awesome power AND volume.

Re: Vaccuum - It works fine but has visitors covering their ears, cats running and kids screaming "wait, wait... I am going to another room" while it devours all in its path (including carpets and blinds) spitting power-drive cables in its wake. It will be a mark of an economic thaw when I finally cough up enough to buy a new one but for now Wren and I can manage to keep the house clean together with our matching His and Hers Hoover's.

The Den in the Basement
The kids have been enjoying the space in the basement after our midwinter cleaning and playdates are now a lot easier. They hang out down there and drink canned juice, throw darts, make Rokenbok trucks crash into each other and play various invented games involving projectiles and scoring with runes. Its like SPY meets ARMIES (even if spies=code and armies=playmobil dudes).

The only one upset by the new arrangement is Wren who routinely asks to "go down self?" to join in after school playdates. If he is allowed downstairs things deteriorate fast with games like "run away from Wren" or "make Wren throw darts at us" which undermine my faith in Frost's inate good sense. Nope. Not here. I suspect that when future generations do the mapping of the family DNA we will find a black sheep who lived naked, used projectile weapons and ran in a pack. Wait... that sounds familiar? Hoo hoo hoo!!

Wren update
I am often asked "how is Wren doing?" I wish I could do more with it. The answer remains twofold 1) How is his heart and 2) how is he day-to-day.

Wren's Heart Update
We don't know how Wren's heart is doing. We have a cardiology clinic visit on March 2nd and until then we don't know. We do know that while his surgery went well in terms of recovery it did not produce as great an improvement across the valve as we had hoped. Further, about 30% of sub-aortic resections require re-operation due to recurrent obstruction. Wren is at high risk for this blockage returning. We hope to give a good report in early March.

If things are stable we will (insha'Allah) make a trip to Australia that month. However right now I have a constant anxiety about Wren's heart. At times I want to cry, just wishing I could be the one with a wonky heart instead of him. I have always had a great endurance and it feels so ironic that I have prided myself of my own stamina when that is now so meaningless.

As he develops and shows his personality and intelligence I also fear future surgeries and the loss of any part of him to complications. I don't want him to be 'broken' at all and while his scar is healing beautifully it is still a reminder to me. "Owie all gone" says Wren but I know its not gone. Its just lurking.

Shone's Syndrome Musing
Its also difficult to handle the label "progressive" which is commonly used about Shones Syndrome. It means that the heart defects shown in kids with the syndrome are not static. You can't think of heart surgery like repairing a broken leg or cleft palate - the anatomy is not a bone which is stable when it is repaired. The heart continues to grow and the muscle responds to repairs and grows differently when the blood flows through the changed anatomy.

Sometimes repairs hold ("he is stable") but sometimes the body's growth and healing undo the benefit of the surgical change. This can up and change over time. We know Wren needs an aortic valve replacement at some time in the near or far future but we want to hold out as long as possible in hopes of making this his last AV surgery and of postponing blood thinners until he is less prone to daily bonks. We also know his mitral valve is abnormal and has regurg. What will this mean?

Only the future will tell and in the meantime it is a waiting game which is not fun to play.

Day to day wonderful
On the other hand - cheerful point 2) Wren looks and acts like every other toddler day to day. He is doing GREAT! We have not been hit by colds and coughs and flu (although Josh has a viral illness right now and is feeling lousy). Wren has plenty of energy and meets or exceeds all his developmental milestones. I was on the phone yesterday and the caller overheard me acknowledging Wren telling me "I squash a tiny tiny bug dead." It turns out he had squashed a dried husk of a winged-thing he found on the window-sill. He comment was "it is such a precious age." Well, sure. I smile often and I want to eat him up he is so cute but he would say "Shannon, do not eat me". (yes, the blight of "shannon vs mommy" has begun.)

Recently he:

• Has figured out that words make sounds and points to each one for me when we read books with big letters. He pretends to read books to me and loves the ones that have one word a page which he points to and says the word. Of course, he still has no idea of his colors and routinely mixes red and blue to the point that I think he is color blind (which I thought about Frost at this age too).


• He can jump and hop along like a kangaroo.


• He has been to his second dance class and loves it. He has figured out more of the moves and was much less anxious. He calls it "dance class" and talks about it sometimes.


• His speech continues to evolve faster than I can blog about it. Today we made up a game with the dinosaurs in which one is sleeping and he wakes it up by making a surprising noise which makes "dinosaur scared!" But we reassure him quickly. He is using longer sentences he cobbles together "its ok dinosaur, its just nee-nah noisy." [aka fire truck]


• Just to give you an idea of his vocabulary he knows these words and uses them regularly: diplodocus, harvester, excavator, t-rex, excellent, delicious, 'mote control, skeleton and scarey halloween.


• He has started to play make-believe. Yesterday he put on a fireman's helmet and took an old serial port cable from the computer garbage and started to squirt out fires around the house with great urgency. On the way home from school last night he was asking "what that noise?" because something in the car interior was squeaking. Frost said "its a mouse, Wren". "Mouse?" asked Wren "Want see it?" I said that Frost was being silly and there was no mouse to which Frost embellished "No, the car is a huge mouse squeaking." "Car is 'uge mouse?" asked Wren. He was excited by this joke. I said "no, silly... we are playing pretend." Wren said "not real" but the idea appealed to him and he muttered "car 'uge mouse" a few times as we drove in the dark.

I was going to do a Frost update too but this is way too long for writing or reading. I shall do a Frost post in a day or two.

Signing off with some neurosis about the future of earth, heart kids and the economy [I am having 'head to the woods with a solar panel' fantasies but there are no cardiologists out there. Crap.]

Biking, 1st Haircut and Little Gym Decision

I have been looking for a 'class' for Wren to attend. I would like something that is short and only once a week. Music, art or big jumping activities would be ideal. Yesterday I took Wren to try out a class at the Little Gym near our house. It was not a typical class because it was the end of a session and the children were "showing off" their skills. Wren liked the room, he jumped and balanced his way around it but I have decided not to join the class. The problem is that it is a lot like pre-gymnastics - not just gym in general. They do balance beam and forward rolls and hanging bars and swinging on parallel bars and even rolling around a bar. Since Wren is only just released from 'sternal precautions' I feel that all this gym might be a bit much.

Still, its hard. I wonder whether this is the beginning of a sloap (aka a soapy slope) on which I restrict Wren's activity due to his heart condition or surgery. I hope not. I would like to hear from other parents whose kids have had OHS but don't have explicit restrictions on activity. Do you find yourselves stopping them playing some games or sports or just let them try? I am not cautious at home. Just seeing that room of balancing, swinging, rolling, jumping and bouncing toddlers I felt protective of Wren. Plus there were 3 kids coughing disturbingly!

We are going to try out the Nurturing Pathways toddler class to see if that is a better fit.

First Haircut
Wren and Frost both received a haircut this week. Wren did not enjoy his haircut despite being able to sit on a wooden whale, watch TV and have his brother and mother sing to him. The salon gave him a certificate which said he has "bravely received his first haircut" but it was a generous assessment. Here is Wren having the snip .


The hairdresser did not do much beside make a straight bowl cut and even then Wren barely made it. I doubt you would notice that he had a haircut.

Biking to Greenlake
On the weekend Frost suggested we go for a bike ride. Lauren lent us a bike so both Josh and I could go and we put Wren on the back. It was cold but lovely and bright and we made it to Greenlake (via Cohen Park) for a cup of hot chocolate and a cookie.


Here is Wren hiding in the shrubbery next to the coffee shop. He gave me a real fright by vanishing into the hedge. I thought he might have run through into the neighboring yard! He is very unusual when he plays hide and seek because he can wait very still and silent for a long time waiting to be found.
Frost was so taken by the sunshine that he asked whether he could get all wet in Greenlake. I said "no". He nagged and I conceded that he could wade and experience the "natural consequences". Of course he wanted to know what that meant and when I explained it meant that he would learn why I thought that wading in icy water was a bad idea by experiencing the consequences - he was determined to prove me wrong.

Here is Frost in Greenlake telling me that there are no natural consequences and he is having fun. Josh is benignly unconvinced.

Early morning birdwatching

We had lovely clear weather this past weekend and managed to get out with the kids to make some vitamin D. On Sunday morning Wren and I went birdwatching at Union Bay Marsh. The area and shores of Lake Washington are home to many overwintering birds.

It was very cold and the rivulets of water crossing the path were frozen over. Wren enjoyed stamping on the ice and trying to crack it. Little ponds were also frozen and pebbles skittled across the surface in a musical way but if a large rock was thrown it cracked the ice and felt through, trapping big white air pockets under the dark surface.


In this picture Wren is listening to the call of the Red Winged Blackbirds. There were many of them on the bare shrubs and trees, calling to each other in sequence. Wren learned to identify the song and I ahve a little movie clip I should put up showing him listening and identifying the bird. He particularly enjoyed looking at the picture in the bird book and saying "that is him!" (to everything from Sandpiper to eagle.


While walking around the trail we ran into Marth (Lincoln's Gran) and may be able to do the Little Gym class at the same time as they. I hope it works out. Martha walked around with us and has also been thinking of bringing Lincoln to the park and has bought the same little bird book of Seattle Birds to learn the local critters. The Union Bay area is very popular with birdwatchers - we saw about 10 other people with binoculars and/or very large lenses on their SLR cameras. My little Nikon was an anomaly (but my subject was closer - in the scenic shot there is actually a red-winged blackbird in the far tree but it appears only as a dot).

When we came to the banks of Lake Washington we noticed some bird photographers pointing out a pair of bald eagles who were attacking a coot out on the lake. We hurried over and watched the pair of eagles dive-bomb the little coot who ducked and dove bravely while swimming for shore. There was a flock of several hundred coot in a protected inlet but this little coot had wandered from the protection of the flock.

After about 8 passes at the coot (at times the photographer thought the coot was a goner) the eagles gave up and flew off to a perch in some lakeside willows across the inlet. The coot swam hurriedly to the flock which was feeding near a great blue heron standing basking on a log near the shore.

It was very exciting. Later in the day we went to the Pacific Science Center and saw the train show which was on over the weekend.