Spiderwalk and a little illness

The kids are obsessed with Halloween and it seems to have been going on forever. Wren throws tantrums on car trips when we drive past "'alloweens" too fast for him to gaze upon. This evening Frost went to the Zoo Pumpkin Prowl with Zephyr and came back with his first stash of (mostly healthy) treats.

Wren is so compelled by Halloween that he insisted on taking "big spider" to the park with us. These are the pictures at the park on Monday.

Wren brings the spider to the park. It is hard to carry and one leg keeps falling off.

The spider discovers puddles of water and gets "bit wet".


Spider tries hanging on a bar. Wren can do it too.

Spider goes for a swing. Other children gather to look at spider and I scan them for signs of imminent sneeze and respiratory distress. One little girl is covered in mucus and keeps wanting to take spider. I suggest we take spider for a walk up the hill and Wren chases and throws him down again.


Last night Wren had a very interrupted sleep - waking about 5 times for varying lengths and seeming to settle with Tylenol. This morning he told me he had sore ear, sore throat and sore head. I don't think that was all true but his lymph nodes are swollen and he may have had a sore tummy. Its possible he is a bit allergic to Kiwi fruits which he had for the first time yesterday but since Frost woke with a painful upset stomach (and was off school) it may be a virus. He seems fine at bedtime but is a little stuffy in the nose and snores lightly.

Stanford Surgery package arrived

We now have lots of homework and information to complete. Some points and issues:

1) Wren will need 4 units of blood during surgery. Do we want to offer our blood for him? We may not be able to be designated donors because They require blood 48 hours prior to surgery to allow time for processing and testing. We can either provide "designated donors" or use the general blood supply. Josh would like to donate if he can. I am investigating.

2) We need to know Wren's blood type. This is not in the notes I have. It may be in his chart records I requested but I have mislaid them in the reorganization of the office. If I can't find them and we can't get them from Children's he will need a blood draw for blood typing at our pediatricians.

3) We check in for pre-op at 7.30am on the 6th November. We need to give Wren a good bath the night before surgery. The actual surgery time will be posted on the pre-op day and we will be advised at that time.

4) If Wren gets sick between now and surgery we need to see our pediatrician to evaluate whether he can have surgery. In general, he cannot have respiratory infection or fever or exposure to chickenpox. Diarrhea and other conditions may delay surgery too.

5) Child Life only consults with children age 3+. I am going to investigate this. We really liked Child Life's involvement up here.

6) There is no sleeping in the CICU rooms - you are supposed to stay and sleep in the Parent Waiting Room nearby. The ward rooms usually provide a sleeping facility.

7) We will be approached to consent for Wren to participate in 2 clinical trials. One deals with post-operative wound infection through the application of silver dressings to the sternal wound. The other involves the use of heparin post-operative. The latter is endorsed by Dr Hanley, our surgeon.

Got to run. Hoping the floor installation shows significant progress and Wren is still napping a short while more.

EDIT: We have found the medical records. Wren has A+ blood type. I am B+. Joshua does not know his. The kitchen floor is done!!

If an asteroid struck earth would Wren's surgery be delayed?

I didn't get a good sleep last night. Wren woke at 2.30pm and his desire for 'milk' borders on pugnacious. I have been trying to wean him from his multiple night nursing so I let him cry a while. Eventually, he became hysterical and cried "Mummy come back! Mummy gone out," so I rushed in to console him. He was live wired and hiccoughing and it took half an hour to get him back to sleep (without nursing) then he woke when I tried to creep out. I caved after an hour and a quarter and nursed him to sleep.

For the final hour of sleep I had vivid dreams.

We were in Stanford and Dr Hanley and his team of cardiologists was trying to speak with us about Wren's case the following day. The problem was that I was like one of those old people in a recliner with a tartan blanket over my legs and I kept falling asleep while he was talking. Finally, I decided that it would be okay to fall asleep and let them handle everything.

But I was woken from my sleep, still in the hospital, by a giant explosion in the sky.

I looked up and a huge black cloud was barreling outwards expelling pieces of things from space. There was an ironing board, pieces of a plane, ropes, buildings - all exploding outwards at 30 000 feet. In retrospect it was an image from a show called Time Warp in which we watched men blending up cellphones in slow motion.

After the first explosion there was a period in which it became like a firework display with triangles of blue lights moving in slow arcs. I thought "ah, its an alien invasion."

Everyone started running to hide from the debris that fell from space. It was raining huge raindrops of molten stone and the sky was cut up by lines of billowing black clouds and chunks of cars thudded down.

Eventually, things quieted down and nobody nearby was injured. Crowds of people gathered in the hospital room and discussed what it was. Someone asked whether it was Aliens (which is what I thought) but a doctor said he had received word from NASA that earth had been hit by a huge asteroid and "they are sending a fleet of jumbo jets into the cloud to see what's in there."

I just thought "F*ck. Will Wren get his surgery tomorrow?"

Keeping Healthy for Heart Surgery

This morning I consulted a naturopath about enhancing our health this month to try and avoid the plagues of flu season before heart surgery. She gave me many suggestions.

Avoidance
We need to limit our sugar. "One of sugar's major drawbacks is that it raises the insulin level, which inhibits the release of growth hormones, which in turn depresses the immune system. This is not something you want to take place if you want to avoid disease."

Keep hydrated. We naturally inhale many viruses and bacteria during normal life. If we have a healthy nasal mucosa, mucus and macrophages attack and immobilize infectious agents. However, if you are dehydrated they are able to attach and penetrate more easily. Keep hydrated, especially on the plane trip down.

Wash hands Wash hands frequently, especially before eating and while in public places. Most infections on airplanes are due to the germs on the surfaces rather than just airborne infections. If we wash hands and are careful to avoid touching mouths and noses we reduce our risk.

Sleep: It is important to get adequate sleep to remain healthy.

Supplements
Daily vitamin: Just in case our diet doesn't contain enough of all the trace elements and vitamins, adults and kids should take a daily vitamin.

Wellness Supplement: For the next 3 weeks we should take a daily supplement of extra vitamin C, vitamin A and zinc.

Mushrooms: We can take a daily dose of extract of Reishi Mushroom. This is an immune system booster. We are only taking this in relatively low dose and will discontinue Wren's a few days prior to surgery.

Cod liver oil: We should continue taking cod-liver oil daily. This encourages a less-inflammatory response from the immune system. It can be taken long term - 1T for adults and 1t for kids. Apparently the kids-dose capsules are too low and the 4 caps on the label is insufficient. They can have up to 12 caps.

TV for Toddlers. More BOB less Mummy

This is my 600th blog post and I feel some pressure to make it special. Unfortunately, my nose is still stuffy and I'm tired so I shall simply continue with the flow of events which are our life.

No TV for Toddlers
Yesterday Joshua woke a bit early and was sitting on the couch. I was home also. Wren turned to me and said "Mummy, go out CAR. Watch BOB TV!"

Joshua is so busted.

Apparently, Joshua is not averse to Wren having a little Bob the Builder on TV when I leave him and Wren to bridge the gap between carpool (8.30am) and Heather arriving (9.30a). It is also apparent that Wren would prefer me to leave so he can watch TV. The blight starts young.

Joshua swears that it is never more than 10 minutes.

Tantrum Time
I am not surprised that Wren is bossing me around. He has become very strong willed recently and if he is tired and feels misunderstood or denied he is able to sustain a very loud tantrum: lying down, rolling about, crying and wailing for a long time.

The last tantrum was when I refused to serve him Eggo's for dinner. Eggos is a sweet corn breakfast cereal shaped like little wheels. Wren likes to be served a plate of it while he stands on his ladder at the kitchen island. I had made vegetables and cottage pie.

"No 'ottage" he yelled "EGGGOOOES"

Another tantrum was when I refused to let the large diggers come in from the sandbox, covered in mud and fresh rain.

Yet another was when I put away the dinosaur after he threw it across the kitchen. "No throw biganimal. No throw IT" he cried. I gave it back in that case and all was settled.

Car Repairs *****JOSHUA DO NOT READ!!!********
Yesterday, Wren and I spent our morning running around arranging car repairs. Initially, I contacted the dealer to buy a spare part and planned to have them install it. They gave me such a run around - could only be done next week, needed painting that would take days, would cost as much to paint it as the part, I would have to leave the car with them overnight etc etc. that I started to call around.

Online parts are not much cheaper and take a long while to arrive so that wasn't an option. I seriously considered having a tan plastic (unpainted) mirror OR installing a non-standard part that was not motorized OR sticking a bit of tape on the end and leaving it as a reminder of my folly.

However, due to the kind words of many friends (who shared their own mishaps and follies and a less judgmental response) I decided that I should have it fixed properly.

That's when I remembered JIM's BODY SHOP. There is all this talk about eating locally and I have often noticed this noisy and smelly little autoshop opposite the Ravenna-Eckstein Community Center. I called and it took forever for Jerry to answer but he was so sweet and friendly that I immediately wanted him to work on the car.

[RING RING RING RING RING - THIS NUMBER IS BUSY YOU CAN HANG UP AND TRY AGAIN LATER OR FOR A FEE OF 75C WE WILL... - RING RING RING]

Hello.

Hi, Is that Jim's body shop?

Yes, can I help you?

Well, I had an accident and broke off the passenger side door mirror - its a mechanical mirror - and I need it replaced.

Oh, that's not an accident. That's just life.

Oh. Um. Well, it FELT like an accident.

No, no. So do you have the new part or..

Yes, I have the part. Well, I will have the part. I ordered it from the dealer and they have it but they are asking $150 to paint it and that sounds a lot so I was wondering whether...

Hrmmm.. mmmm. Well, the thing is that they probably send it out to a body shop anyway. You have to match the paint, see. And paint comes in 1 pint minimum so that's $80 already.

So, its reasonable?

Well, I am trying to think of some way to make it sweet but.. mmmm...I could send you over to WestCo to get the paint. Look, if you want to... I would need to see the damage. Why don't you drop around the corner and I will have a look at it.

We dropped by later and Jerry was lovely. He's an older man who likes people and liked Wren. He let Wren pick his sungold tomatoes. It turns out that his son has Wolff-Parkinson-White syndrome and was treated in the cath lab at Seattle Children's. He knows where all the Doctors, surgeons and even the CEO from Children's live in our neighborhood and loves the hospital for the help they gave his son. He even played College Football with his heart issue (is a conduction problem) and eventually needed the intervention.

It felt completely different to have our car worked on by Jerry rather than the blokes at Kia. He sent me to get the paint myself (with no markup) and I don't have to leave the car at all. He's going to put the part on for $20 instead of $90 and so even if he charges more for the painting itself I feel happy.

I will also know how to get the Subaru fixed (yes, I banged the Subaru years ago and the mark remains) if we decide to. He gave me a quote for the repair caused by another driver in the parking lot at Remlinger Farm (she left a note on the windscreen). If she decides to honor that note and pay for the damage I will be able to use the same paint to have it done).

Not a bad outcome, considering.

Wren likes Jerry's tomatoes and liked the community center where we went afterwards.

More 'awoweens?
Wren loves Halloween decorations. He calls them "awoweens" - spiders, skulls, skeletons - are all "'awoweens." He finds the automated ones scary but compelling and likes us to pick him up and then go and look through the curtains at the spiderweb and scary skeleton guy who are set up on our porch.

In the morning when he woke today he said "'awoween SEE it. Little scary."

His attachment to things makes it difficult to move him about. If I want to go out he may be wanting to see the 'awoweens. If I am trying to leave the store he might be interested in the scarecrow or pumpkins. Everything is very slow (unless you want to risk a tantrum and scoop him up and make a run for it.)

Another cause for inertia is the VERY big pumpkin at PCC. It is about the size of a dishwasher and Wren climbs up beside it and pushes it with both hands. It has formed a nice flat bottom, settled down onto the earth with its weight, and does not move. While it remains he does not want to move either.

Soulumination
Last weekend we had a mini-photo shoot of the kids and family with a Soulumination photographer. This is a charity that offers free portraits of children facing serious health issues. At first, I felt wary of contacting them. Some of the children on their website are so sick that I felt that Wren was too healthy and happy to be photographed. Plus, I don't want him in that category.

After speaking with Sarah at Soulumination I felt reassured that they are very happy to photograph children with conditions like Wrens. I asked to mainly focus on Frost and Wren so we have a nice quality picture of them together.

We went to the local P-patch.

We haven't seen the pictures yet but I am looking forward to it.

Frost invents co-housing and a new brother

On the car-ride home from school today, Frost confided that he and Alex suspect they are really brothers and "we would like to have a DNA test. Could we do that?" I said that they could but it would be expensive and may need to wait until they are older.

After a discrete pause I asked how they thought they could be brothers. Frost explained that they were good friends and lived nearby each other and perhaps they were brothers in the same way that Eve and Oliver discovered they were cousins. I should give a little background here and explain that Eve and Oliver are two kids in our school carpool. They have been told that they are related - although the link is somewhat tenuous, something like a grandmother's second marriage to a great uncle of the other side.

This has given Frost the idea that he may have a secret brotherhood with Alex.

When I asked Frost what he thought a brother actually was, he said that it was another boy who was not born at exactly the same time as you. Hang on, what? I tried to explain that brothers had the same parents. He then suggested that they were step-brothers. Uh oh. Another definition required.

Eventually he had it figured out that (in his words) "So brothers are two boys who live together who were born by the same Mom?" I shall just leave it there for now.

Alex and Frost were particularly excited about being brothers because they felt that if their DNA confirmed it, they should live together. By the way, according to Frost he has heard about DNA "all over" and "DNA tells you if someone is in the same family or not."

Frost explained that if we sold our house and built another house on top of Alex's house we would be a rich family and have 4 cars and we could sell one of our TV's and just join them together and have a double-super-size flatscreen TV and an attic with a trapdoor and many things and it would be cool.

Costly accident and some more diggers

Last night I had an accident. I drove out of the garage straight [into the wall of the garage] and smashed the passenger side door mirror. I am very sad and Joshua is frustrated and irritable [but not thinking about it]. This morning, I vacuumed and cleaned the car to try and make it feel better after the accident.

Frost said "well, you drove into that rock at Camp Orkila and you smashed into a pole in the parking garage once, so.."
And Joshua added "he has a point there".

It seems that the male ability to point out the driving mistakes of the opposite sex starts young. I am chagrined, embarrassed and miserable about the waste of money. Who would have thought that these little plastic and glass things on the side of cars are so expensive and why do they have to be motorized? I mean, how often do you adjust your side mirror, really? Can't we get out the car and do it?

Sigh. I am just trying to avoid the sad and jagged edge.

On a lighter note, Wren and I discovered a new playground (or newly renovated playground) at the entrance to Ravenna gorge. It has a huge circular sandbox which is filled with diggers, dump trucks pavers and other construction machinery. Wren spent a long while digging, making roads, sliding the diggers down a small slide and hiding them in holes and mountains of sand. He did not want to leave.

Later, he slid down the very steep slide with me (very scary) and we road the bike through the ravine to a coffee shop where he had a cookie and I enjoyed a latte.

He started his nap late and now is still sleeping when its time to go and drive carpool. Uh oh. He is going to be sad to be dragged out into the sunlight in a moment or two.

On another happy note. Frost completed his independent testing for the Seattle Public Schools APP program yesterday and it looks as if he will qualify for Lowell Elementary. We await the formal report. If he does meet the cutoff he still has to do the public group testing later this month however, if he does not score as highly in the group setting (our concern last year) we are able to use these private results to appeal.

Weekend Wrap-up

This was another busy weekend. I was sick with a cold and low fever from Friday night until Sunday morning. Joshua also has the head cold and Wren has the tail-end of the snuffles but is also cutting two molars and his gums look sore and red.

Unfortunately, I wasn't able to lie low because there was lots of early rising and night waking from Wren (he has woken twice each night for the past 3 nights and then risen before 5.30am) because of his own discomfit. There was also Frost's soccer game (which was a lot of fun) and a homemade pizza. Frost has been playing quite a bit of goalie in the matches and his team chants "fearless Frost" at points because he has made some rather brave saves. This match he threw himself at a very hard kick from close up and caught it in his belly on the ground. He also deflected a hard ball coming in the air. He loves playing goalie but I wish he was getting more practice running and actually shooting at goal. When he is not goalie he is very defensive in his play, running back to protect the goal as soon as the ball changes direction, even if it means stranding a single player of his team with a chance at a goal.

Sunday, I felt much better. The kids and I went shopping for a few hours to catch up on days of consumer neglect. We bought filters for the furnace which is now on for the winter, some firestarters to help with burning our woodpile, Bakugon for Alex's gift, a few toys for the kids, pipe insulation, some Mums (a kind of daisy) for the window-box and even some bulbs for spring lilies.

In the late afternoon we went to the Party Supply store which is transformed into a Halloween costume and decoration store and bought many exciting skulls and skeletons to decorate the living room and porch. Frost has decided to be a cowboy for Halloween. As far as I can work out, this is so he can carry a cap-pistol as a prop.

When Wren woke up this morning his first words were "Haween Shop. VERY scary. BIG keletin - 'piders on it!" and "GO-sst!"

Frost woke up and loaded his cap gun before he had clothes on. I told him he had to be dressed to shoot caps in the gloomy dusting of rain.

He dressed with alacrity and shot about 16 shots - not enough to wake the neighbors but enough to get Wren excited to "want TURN!"

Japanese Garden Feeding the Koi

On Wednesday, Wren and I went to the Seattle Arboretum Japanese Garden to feed the koi. I have been meaning to go for a few weeks and am lucky I did because it was one of the last days they were selling fish food. Apparently, as the water temperature drops the fish go into a kind of hibernation (metabolism drops) and they eat little.



When we arrived sun was breaking through between huge purple mountains of cloud. Wren ran straight to the bridge and I game him small handfuls of food for the fish waiting under the bridge. He loves feeding them - there are also Koi at Swansons nursery and we get really close to them there and he tries to touch them. Here, he stood and chatted about the fish for about 20 minutes, carefully dropping pellets of fish into the water.





Eventually, I managed to persuade Wren to walk around the garden. It is a beautiful place, very tranquil and ordered. Unlike English country gardens or most of our gardens, the aesthetic is controlled and everything non-essential is removed, shaped or pruned in a way as to reveal the intrinsic form of a plant, moss, a rock or a puddle. This makes it very satisfying for a toddler - its a series of dioramas: little river, beautiful rock, hidable bush, bridge and fish. Wren did not respect the paths as much as he should and tried to hide in shrubs along the way. He hid in this one before finding it too small:



Inevitably, we returned to the bridge for more fish feeding (a second bag of food). This time, a hungry duck decided his odds were better OUT of the water. Wren did not like this. He said "Duck, go back IN. Duck IN. Duck DOWN." I waited to see how close the duck would come and the answer is VERY close. It ate from my hand for a while then I pushed it back into the water with my hand, causing wren much satisfaction. "Duck go down. Duck go down." he repeated.


We completed the circuit around the little lake (Wren calls it a "bath" - as in "fish in bath?" or "Duck go in bath!" by then, Wren was yawning and I pushed him back to the car at a jog as the rain started to fall heavily. We were lucky to catch a little sunny hour in the day.


No nap?
On they way home, Wren fell asleep in the car but woke during transfer to his bed. For the first time in his life he had no nap yesterday (well, only 10 minutes). He was quite distraught by 7pm and he went to bed early. Due to his head cold (yes Wren has a head cold) he has been waking during the night and getting up early but he did OK considering. He woke at midnight, 5am and up at 6.20am. I hope he naps today for Heather. I was a wreck by 5pm and even forgot Wren's soccer ball when we took Frost to soccer practice.

Remodel update
The flooring, Marmoleum, was delivered today. Installation will be next week.

Talking about Death

I subscribe to a number of invaluable online support groups which correspond via email and a recurrent discussion in these groups is how and when to speak about death with our children. I know I have told this to some of you but for many congenital heart defects, today's teen survivors are the first generation on the cusp of adulthood. Since techniques and technologies are constantly improving, we do not know the life expectancy of those who receive repairs today and the death of a hamster can open up a more difficult discussion in our families.

Here is my reply to a recent thread on this topic, replying to a mother whose 3 and a half year old with HLHS and unknown prognosis. Her preschooler asked when he would die and she wanted to avoid that conversation...

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I would like to delay that conversation too and we have a bit of time since Wren is not yet t 2. However, Wren's risk of death due to his heart is very present in the mind of my 7 year old. I know it worries him but he looks to us for reassurance and help in interpreting the risk - not easy for us since Wren is facing surgery next month.

Just yesterday, I stopped the car at a crosswalk to let a very pregnant
woman cross in front of us. I said to Frost:

Me: Her baby will be born quite soon. She is very pregnant.
Frost: Maybe she is just fat.
Me: No, when you see a woman who has a very big belly like that but she is
very skinny everywhere else you can guess she is pregnant.
Frost: Oh.
Me: Lets wish her baby a blessing for a good birth.
Frost: Mmm, lets send him wishes that he doesn't die.
Me: He's not going to die! Almost all babies are fine being born.
Frost: Well, lets send him blessings that he doesn't have a heart defect.
Me: [thinking fast] We can send him the wish to have a good doctor if he
has a heart problem.
Frost: Ok. He will be fine.

Uh oh. I notice that Frost is very matter-of-fact about death and its risks. When I was a young girl my grandmother died slowly of breast cancer. Nobody spoke about death or what was happening and I lived for years in fear that I secretly had breast cancer [and was a rare pediatric case - as a preteen I even looked it up in a medical dictionary] but in my tragic narrative nobody knew I was dying all the time.

I think that children can cope best with fears when they have the freedom to air their worries with us. Remember, they have no context or perspective by which to measure the relative risk of anything and we can help contain a fear - even a very real fear of death - and make it manageable because, ultimately, even death IS something children can face. I think children do well with facts but are always alert for the currents of anxiety which can cause them to disbelieve platitudes.

Another example from our lives is when I told Frost to remember to wash his hands so Wren didn't get a cold because if he gets flu or a bad cough now his November 7th surgery date may get bumped. Frost said "and then he will die?"

"No," I explained. "Then we will have to pay a lot more money to change our airfares and find another date for surgery and to manage without Granny because she will only be here from Australia for a month at most."
"Oh," said Frost "So if he gets a cold we will be poor?"

I realize I have to spell out repercussions very carefully to avoid placing the weight of the world on his shoulders.