Stanford feedback - quite frustrating

Wren's case was presented at conference on Wednesday but the Secretary was not present so she doesn't have typed notes. She has Dr Hanleys TAPE of the notes he made on Wren's case but it is on one long tape of the conference.

It will be reviewed on Monday and typed up next week and sent to Dr Hanley for review. He doesn't like preliminary notes going out, apparently.

So, it will be 7-10 days before we hear back from Stanford.

On with summer.

Wren's Olympics

I am not sure whether Wren has been influenced by gymnastics on TV or he just enjoys the sensation of hanging, but he has been very keen on the high bar the past few days.

It started by him hanging on the handles of the minivan while he waited to get in. After that he started to hang off the kitchen table, the island and to try to hang up on chairs.

Eventually I balanced the broom handle across the kitchen counters and Wren loves to go "on two three GO" and swing on the broom. It really looks like a toddler high bar routine.

Here is a little movie of Wren doing high bar this evening after Joshua arrived home. He says "boy hang, boy hang, BOY" at the end, a few times. You also get to see him touch his nose as he says "1-2-3-GO." We don't know why he does this but he does it every time.

Further Assaults on Sleep

For the last few days I have been getting less sleep than usual. Wren has started waking around 2.30am again and although I am not getting up to help him back to sleep then, I do go in at 4.45am for his morning "muk". On a good day he goes back to sleep for an hour or more but recently he says "more muk, mama" when I try and put him back to sleep.

Then there is Frost. Over the past month his reading has become more fluent and he has started reading books that interest him. On Sunday Josh picked Animorphs #1 from the library and he has been reading it when he runs out of playdates and screen time. This includes until 10pm at night and from 6am in the morning! Argh. I am very pleased that he is enjoying reading but do I have to limit reading times too?

Wren's sleep is a bit more difficult to handle. He has gone through periods of sleeping very well but now that I know about his high blood pressure and how hard his heart is working I don't feel good about leaving him to cry in a wakeful state. At two he is quite sleepy so he is not as worked up as he gets at 4.45am but 4.45am??? That's dark still, again. I am not so cheery in the 4s.

I have considered that he will sleep better when I stop nursing but right now, I feel it is still good for him and he is a complete nursing addict. He wants to nurse if he is hurt [falls over, bangs toe], or scared [BIG airplane / jay! jay! / nut! nut! / dog!] or feels like some attention [make tain tak NOW!] or is hungry, or thirsty or wants me to sit down. I have tried to cut him off a bit or distract him for many of these needs and he is very sweet at bed and naptime. He rushes to the bed in his room and lies down shouting "night night, muk!" often adding "NOW" if I am slow to arrive.

He doesn't nurse passively either - its very athletic. He pokes his feet between my legs and then pulls them out, pokes them through again and pulls them out. He grabs fistfuls of my shirt and twists it. He pokes my chin, grins, rolls as far as he can while still nursing and then, if I cut him off, grabs hold again and looks up with a mischievous smile and a "more? muk?" hope. With this level of activity it is taking longer to put him to bed, even at 8pm, and I usually have to put him in bed and sing to him to calm his inevitable protest when I finally tire of the performance.

I shall have to add "consult lactation consultant at hospital" to my long list of things to do. I want to make sure Wren still has a chance for "muk" after surgery, even if he can't eat for a few days.

Stanford Conference tomorrow

Spoke to Dr Lewin this morning. He told me that Cardiology Conferences at Stanford are held on Wednesdays. Wren's case is due to be presented tomorrow. Notes will be sent to the Heart Center secretary and can be obtained by Dr L on Friday.

We will hear from him this Friday.

Children's Seattle tentative surgery date

The scheduler from Children's Hospital up here has called a few times and caught me this morning. I feel like being a bit elusive because I want to know where we are going before we make a plan.

I told her this.

Still, she said that she had a tentative date for us of September 12th.

That seems very soon and I am not at all ready. Certainly not that ready.

That is 2 days after Frost goes back to school in Fall. Two days after he gets his spacers for braces. Two weeks before he gets his retainer thingy.

It is 4 weeks and three days after Wren eats honey from the jar and I don't stop him. He shouts "more BUTTA!" so I better deliver.

When boys torture insects, or Is my son a psychopath?

During a chat with Frost about a playdate yesterday, he admitted that he had played a game torturing ants. He described the game like this [X = playmate]:

We had these bits of sap from a tree and we dropped the ants in. In the beginning we took the ants out and let them go all sticky but then X had the idea of squashing them so we tortured the ants first and then killed them. We just squashed them.

I was very upset about this game. I immediately asked Frost to think about the ants and how they were just trying to survive and find food for the ant nest when some large animal captured and hurt them and then killed them. I noted that there were no ant hospitals for ants covered in tree sap or partially squished. That the ants were part of a nest and had wider ant community. How did that make him feel?

I think I labored the point a bit because he began to feel sad and ashamed and accused the other boy of having the idea and explained how he thought it wasn't good to actually kill them but he just gone along with it because it was his house.

I did not absolve him. I pointed out that I expected him to say "no" when someone did something he didn't like or feel right about. I suggested that he didn't need to make a big deal about it, but he could say he would like to play something else or start another game. It didn't matter whose idea it was, he was still responsible.

Frost then refused to come in the house. He sat under a bush in the street and acted sniffly and dejected and I felt self-righteous and guilty.

See, on reflection, my response is complicated. Since pre-adolescence I have been one of those kids who anthropomorphises animals. I think of the struggle to survive as a pretty self-aware thing in everything from the slug to the impala dragged down by lion and if you have followed my blog for a long while you may remember my trauma at viewing the lost-baby-elephant part of the Life on Earth series while strapped and anesthetized in the dentist's chair. I am a bit Janist in my concept of 'impact' but spineless because if someone else gives me tasty food on a plate I accept it as Food not the Bottom of an Animal that was Trying to Run Away.

I wasn't always this empathic. As a child I have been told that I ate a bit of living shongololo [South African millipede] and I vividly recall making flower-beetle pie out of red mud and beetles I captured from my Granny's rose garden. I was also party to a fund raising schemed in which I earned a cent for every snail I delivered to my other Granny's coffee tin death chamber - to be melted by salt. These may have been exercises in organic gardening but I didn't have any qualms at the time.

But I developed a sensitivity somewhere between this point and the time that my Dad tried to show us the transformation from chrysalis to butterfly. We kept a chrysalis in a bottle, dangling from a twig. The butterfly emerged when we were away and, lacking the space to fully expand its wings, they hardened as a crumpled mess. This experience of the cruelty of curiosity still pains me and I remember many incidents of trying to save an ant from the swimming pool or climbing a tree to restore a caterpillar to its supposed host but cannot account for the evolution of my feelings.

Meanwhile, there is Frost. He is a sensitive boy and generally surprises me with his empathy. He won't eat meat (except Teriyaki chicken and hot dogs which are classed as Tasty Exceptions) and was completely turned off jello after Alex told him that it had cow hoof in it [he thought Alex was lying and has not touched the jello since, saying "it tastes not so good now."] So why did he relish this game which he described with "death" and "torture"?

I did a bit of googling and found this is a common issue for parents of boys. After a women posted a question about her son who she found launching snails to birds from a catapault people seem to vary widely in their reaction from horror to appreciation.

Many feel that it is a moment for moral boundaries. The message is that we don't gratuitously hurt other beings but its OK to eat them. Supposedly that is necessary not gratuitous. Ie, you can boil a lobster to eat but not as an experiment. As a poster put it "Eating animals is not comparable to flinging them about for fun."

Of course, there are those who seek the high moral ground and lead me to fear Frost is a sociopath or worse. Edam writes in that discussion that she feels:

Horrified. Cruelty to living creatures is not big or clever. What will they do next, torture kittens? People who are later convicted of cruelty to animals generally started small and built up. And those eventually convicted of violence against human beings often started with animals.

Doesn't mean every child who is horrible to insects or molluscs will grow up to be a terrible human being, obviously, but it does mean it is worth putting a stop to NOW. Both because it is wrong and because not challenging it sends a very worrying message that may encourage the child to do worse things in future.

Yikes, I am glad I stood firm because I do not want to see the "worse things in future". Then there is the other view which is that this is a common stage for kids to go through:

I have to confess I spent half my childhood chopping worms in half, squashing mosquitos and trying to catch flies to feed to the spiders to see what would happen.
I have grown up an animal lover. It is NOT the first step to mass murder

In retrospect, I now favor the firm but less emotional response:

"I.. think these kinds of activities are a natural part of the developing curiosity of many children.

It is up to adults to explain that it is not kind or appropriate, but no need to make the child feel like they are evil or weird.

Because they aren't."

Domestic Chaos

Over summer weekends are even more work. As I look out through the kitchen I can see JOBS everwhere. I went shopping today and the wine is waiting to be put away. Fermenting pineapple should be slopped into the compost bucket which in turn awaits a journey to the compost bin waiting for collection on the curb.

Frost and Wren have been playing with car tracks which now snake across the persian carpet around discarded shoes, colored pens, various remote controls and empty bags from this morning's shopping.

I can smell stewing apples (from the fallen crop I was given, helpfully peeled by Josh)which I have steamed for Wren's mush AND we're cooking rice for sushi dinner tonight.

In 20 minutes [countdown is on] we are heading out to buy an oak desk advertised on Craigslist and then to return the library books. Now that Frost is reading so much on his own I have an even heavier bag and I hope to get something escapist and lively for myself. I expect it to contain guns, a gritty detective and a mysterious socialite / anthropologist / scientist who is a girlfriend/ victim / accomplice.

But of course, on the cusp of my various plans Frost has vanished up the street with a boy looking for a friend to play with. "Argher," says Josh, collapsing on the couch from heat and the imposition of effort. I don't feel the heat much but while summer is nice when wet, I would like it better with a nanny, a personal chef and a pool.

No news from Stanford, yet

I am still waiting to hear from Stanford. Dr Lewin said he would call again on Tuesday if we had not received an opinion by then.

I have been getting a lot of information about valve options and feel I understand the issues a bit more. It is a lot about balancing the risks of dangerous bleeds on Warfarin vs the risk of mechanical failure of the homograft (animal product) which typically occurs after 5+ years (but can be widely varying). Another factor is the time it would take for Wren to need a valve replacement due to outgrowing the largest valve they can insert in his aorta at the size it is now.

An aside: we received the bill from the cath a few weeks ago and it cost $8,519.

Wren still has the glue on his hip from the bandage they stuck over the cath site. They said to let him stand under the shower to remove it but he has bathed daily for over a week and it has still not come off. He is very sensitive about it because it hurt when I removed the bandage (which was glued on). He cries and says "no, glue, all done" if I touch it.

Anyone have any tricks on how to remove the glue?

Frost Progress Report for Granny

This post is mainly for Granny Anne who always asks "how is Frost's swimming?". We grew up near the Indian Ocean - a sea that is warm enough to enjoy swimming in - and had friends and family with pools in their own yards! I know that she wants to take Frost to hot and sunny places with swimming pools and to coral reefs where one must float with a snorkel so swimming is important - probably like skiing for those with snow outside their door all winter.

For the past two weeks Frost has been in the Beginner 1 class at the local private pool. The lessons are for 30 minutes with 15 minutes of "free play" before or after the session. Last time Frost did some lessons was 2 years ago and he was very reluctant at that time. This summer it is a totally different situation. He loves swimming lessons and was keen that I sign him up for another 2 week session.

I didn't mind. It gives our days a nice structure as we walk through the playground on the way home and get back in time for lunch and nap. Wren runs around the pool and has his own landmarks like "BIG CLOCK" and "TENT" (the pool plastic used to cover it overnight).

So, Mum, here is Frost's official Swimming Progress Report for BEGINNER ONE:

Frost can always do:
Crawlstroke, good form for a few strokes.
Rhythmic breathing to the side, 10 times, on the kickboard
Kick width of pool with kickboard
Beginning Standing dive in 9ft of water
Knows safety rules and assists others

Frost is working on learning these skills
Back float for 30 seconds (can only do aobut 15 seconds)
Do backstroke for 25 feet (he is dragged along for this!)
Crawlstroke with side breathing across pool. (can't get that far, starts to doggie paddle)

When I told him that I was writing a blog post about his swimming he asked me to add how he reads "very fast now". He also wanted me to tell you that he finished the second of the Wimpy Kid books. He read Rodrick Rules in 2 days and said "I think this was a really fun book. Parents of a child I think maybe would think it has a lot of naughtiness but not bad words so lots of kids will like it but some parents will have a problem with it but kids will like it a lot.... I think they will."

The Games Wren Plays

I've been so focused on the heart issues that I haven't been keeping up with all the fun at home. Its still summer vacation (for those of you in Southern climes) and Wren has become very verbal recently. He speaks in sentences all the time and has a fabulous vocabulary. Just this evening before bed he said:

"Dada MOVE night-night"
"Put tain-tack in"
"Taste num num NOW"

He calls all small round things bubbles (including blueberries and grapes) and loves to order us around and claim "MINE MINE, WEN's WEN's!". He can also copy almost anything I say and makes us laugh with his funny comments. Along with the verbal explosion Wren has favorite games we must play every day. Here are the most common ones.

Make Tain Tack
Every morning when he wakes up we read books (Wren drops them on my head as I lie on the mattress on the floor) then he opens the big plastic tub with train track in it and starts to build train tracks on the carpet. He goes for all the interesting pieces, inclines, bridges, station, tunnels and tries to stick them all together. It is only a matter of minutes before he runs into trouble with a bridge and calls out "HELP, up-down" which translates as "help me make this bridge". He cannot figure out how to put the supports under the ascending track so they won't connect or stay up when he does it himself. I try and steer his meandering pieces into loops which frustrates him because then he doesn't have an end piece to build from.




The trains themselves are fun too but not the main event. We help them go up-down for a while and then they run off into the corner somewhere under the bed or cupboard and whir neglected until the battery runs down (unless I notice). Meanwhile Wren announces "tain tack away" and puts away the track piece by piece before moving on to the next thing. Frequently, I am still in the middle of the game and am a bit crestfallen by the destruction of the Gordion knot I have helped create.

HIDE! Mountain!
Wren loves to hide. He gets help to make a place out of pillows and lies there in silent glee while we pretend to look for him. When I find him he smiles and wriggles for a while and then gets indignant and says "hide, hide" again and tucks his head back in the pillow.

The other day, Frost and Wren were playing hide and Frost came running into the kitchen telling me that Wren was "hiding in a tomb." I said "what?" He explained that he had made a pillow nest for Wren that was "like a tomb, you know.. not a real tomb but like that." I was aghast and told him to not use that kind of example because he knew I was worried about about Wren going to hospital. Unfortunately, this backfired because Frost decided it was frightfully naughty/funny to joke about Wren in a tomb. A few minutes later he called me into the bedroom where he had made a sign in black texta.

The sign he placed on top of the pillow hidey hole was: HERE LIES WREN.

A teacher at our school commented that kids always play with things that worry or frighten them. Perhaps so. Frost also has always had an irreverent streak.

Here are some pictures of Wren hiding in pillow mountains.



Read Book
Likes to read books in the morning, especially books about diggers and babies doing things. He comments on the pictures and enjoys books which we have read many times before like "Go Dog Go" and "The Digger Book." He likes to hold the book himself and to turn the pages in somewhat random order often skipping pages and then looking puzzled and frustrated that his favorite images have gone.

BOUNCE! Down! BUMP!
Wren is very active and loves to rough-and-tumble with Joshua and Frost. He gets very excited if you play chase and sometimes gets excited and runs around in circles shrieking in fun. Frost and Wren feed off each other's energy and by late afternoon I feel I am herding elephants through the house. They like to jump off things (Wren jumps off the coffee table repeatedly practicing landing and saying "BUMP" before he tries. He often does bump but continues anyway. He loves to play pillow fight and wrestle with Joshua when he comes home and has a complicated series of games he likes including being swung upside down and being thrown into a soft pile of quilt. Frost has made up a game called "rock-a-dump" where he pitches Wren forward out of a rocking chair to his great delight saying "rocka, rocka, rocka, rocka, rocka DUMP!"

Here is Wren in a spontaneous display of toddler gymnastics in the living room. The pictures were taken by Frost.

Copying
Wren also likes to copy Joshua and me. This evening while I was flossing he asked for a piece of floss and carefully sucked and pulled it through his teeth saying "ew, minty!" each time. Afterwards, he threw it in the bathroom rubbish bin just as I do.

When I am cleaning he gets out the mop and starts to dry mop the kitchen while I get ready. Today he took out the wet mop and sloshed water everwhere. Doing laundry he has got the idea of putting the clothes in the washer and of pulling them out the dryer. He is very sweet and helpful when he knows what I am doing and is always watchful in case I put my shoes on or pick up keys. If I do, he rushes to get his shoes and tries to go downstairs to get in the car in case I leave him behind. Once I have mentioned going out he is agitated and waits by the door as much as he can while I emphasize "LATER" or "soon" as the case may be.

I am never going to get this posted later because its Frost's bedtime again. Josh is out tonight with his old mates and we have been watching Olympic swimming. I think I will have an early night.