My mother is back from vacation and I shall have to resume my daily postings on the grandchildren. Mum has this super cheap "phone card" which is great but for the haunted house echo which has us speaking on top of each other or fading in and out from time to time. I need to write so she knows what I am talking about. Actually, I don't have time to post much now other than to say that all of us are well and have been enjoying some rare sunshine and walks.
This afternoon at 4.30pm Frost said "God, what time is it? Its so light?" When I told him the time he was stunned. "But its not dark?" he said. I explained that it had been weeks since we had much sun and he wasn't used to it staying light a bit longer. Wren looked out the window and said "go outside" which he did.
Seattle Children's Museum
This morning I took Wren to the Children's Museum. It was his first visit and he enjoyed the Imagination Art Studio and the car you can drive best. I have some lovely pictures of him painting. He also made a collage on an old LP. Strangely, the material that the children were given to cut collage from was National Geographic Magazines from the 1950s and 60s. One, from 1953 had an article about a trip down through Africa and included a story and pictures on Cape Town and Durban. I cut out some pictures from Muizenberg Beach in 1953 and stuck them on Wren's LP. I also tore out some sections to take home. There was another fascinating article in the 1966 edition. Apparently in March 1966 (shortly before I was born) Scientists in Seattle captured an Orca and kept it 'sea caged' at the wharf for tourists to watch. Bizarre. I am thinking of sending the article (which I stole from the toddlers snippety snip) to the Seattle Times (since the PI is closing) to do a follow-up story. Orcas are always in the local news!
Support Group for Shones Syndrome
I have started a google group for families with children who have Shones Syndrome. I have been learning a lot from email contact with a few of them and hope that others will join and inspire and inform with their experiences. Here is the group link. We have no posts yet but a few members.
http://groups.google.com/group/shones-support
Friday, January 16, 2009
Wednesday, January 14, 2009
Brothers
Wren has been particularly sweet on Frost recently. Everything Frost does or has Wren wants to do or have. This makes it hard for Frost to do some of his own things and has reduced the time Wren spends in age-appropriate (normal toddler) games. When Frost had a playdate with Alex recently, Wren came running in distress to tell me "Mummy mummy HELP HELP Wren don't have a gun!" and he loves to "play with guys" which are playmobil figures and transformers.
He notices that Frost does not sit in a booster seat at table and has taken to sitting in the chair next to Frost whenever he can. He also likes to read near Frost and watch him playing Lego Batman on thee Wii. I know this is inappropriate but he jumps up and down and shouts "BatMAN!!!" Here are the boys eating breakfast together.
And here they are in a big cardboard box. Wren used this box as an airplane. All the animals are passengers but after Frost climbed in too it was very squashed.
Frost, the reading addict
You may have noticed in the previous pictures that Frost has his nose in a book. This is not a co-incidence. Frost has his nose in a book almost all the time he is not having his screentime. He has become a reading addict and I have had to ban books at dinner and take away some books because he cannot hear me, get ready for school or do his chores while a book is near. Tonight he read his book [Warriors - Into the Wild] in the bath for half and hour then begged to be allowed to stay up a bit longer to read at bedtime and I caught him sneaking his light on to read some more.
Running and Jumping are EXCELLENT
Meanwhile, Wren is working at prefecting the run and leap. He is able to run and JUMP and land two legged like a frog. He loves to do this and to take a series of hops across the room. Sometimes I jump too and he finds this very exciting. His word of the day was "excellent" - he kept saying things were "excellent." He thinks that the iPod recordings of the Wiggles are pretty great too. I have made a Wren's Favorites Playlist which is available on the dock in the kitchen and we often dance or at least watch the iPod while it plays. His favorite tracks include "Chugga chugga big red car" and "Old Dan Tucker". We also dance to the knickerbocker song. Tomorrow, I will surprise him with a new download from iTunes - "Cold Spaghetti.
He notices that Frost does not sit in a booster seat at table and has taken to sitting in the chair next to Frost whenever he can. He also likes to read near Frost and watch him playing Lego Batman on thee Wii. I know this is inappropriate but he jumps up and down and shouts "BatMAN!!!" Here are the boys eating breakfast together.
And here they are in a big cardboard box. Wren used this box as an airplane. All the animals are passengers but after Frost climbed in too it was very squashed. 
Frost, the reading addict
You may have noticed in the previous pictures that Frost has his nose in a book. This is not a co-incidence. Frost has his nose in a book almost all the time he is not having his screentime. He has become a reading addict and I have had to ban books at dinner and take away some books because he cannot hear me, get ready for school or do his chores while a book is near. Tonight he read his book [Warriors - Into the Wild] in the bath for half and hour then begged to be allowed to stay up a bit longer to read at bedtime and I caught him sneaking his light on to read some more.
Running and Jumping are EXCELLENT
Meanwhile, Wren is working at prefecting the run and leap. He is able to run and JUMP and land two legged like a frog. He loves to do this and to take a series of hops across the room. Sometimes I jump too and he finds this very exciting. His word of the day was "excellent" - he kept saying things were "excellent." He thinks that the iPod recordings of the Wiggles are pretty great too. I have made a Wren's Favorites Playlist which is available on the dock in the kitchen and we often dance or at least watch the iPod while it plays. His favorite tracks include "Chugga chugga big red car" and "Old Dan Tucker". We also dance to the knickerbocker song. Tomorrow, I will surprise him with a new download from iTunes - "Cold Spaghetti.
Monday, January 12, 2009
The Sad Saga of the Duck-Godzilla Umbrella
We've been having a bit of rain recently but since its been pretty mild I have been taking Frost and Wren out walking. He loves using his duck umbrella. Its made by a company called Pylones and had a duck head and a duck foot handle and has purpled feathers inside the plastic canopy.
Unfortunately, when I shut the door of the minivan one night the duck umbrella was in the door and it broke with a mighty crunch. The damage was cosmetic but as you can see from the picture below, it was quite tragic. I felt very bad to have broken it but Wren said "its okay, Mummy okay? need GLUE" and we tried to get over it. For a few days duck-head lived a life apart from the umbrella - while Frost kept suggesting I glue it. To my mind this was clearly impossible.
To make the best of a bad situation, I suggested we put a dinosaur head on the umbrella to fix it. Wren is very happy with the godzilla head Josh attached this evening.
Skateboarding
Today, we walked to Top Pot for donuts and Frost brought his skateboard with him. On the first slight incline he rolled down without falling off. He was very tentative and wanted lots of reassurance about how well he was doing. After a few rolls he learned how to steer the board and went down some steeper hills. He was very pleased and after the donuts he hopped on his board with great confidence. He even learned to steer to avoid holes in the sidewalk. After each descent Wren ran down the hill towards Frost to "bring him back".
Unfortunately, when I shut the door of the minivan one night the duck umbrella was in the door and it broke with a mighty crunch. The damage was cosmetic but as you can see from the picture below, it was quite tragic. I felt very bad to have broken it but Wren said "its okay, Mummy okay? need GLUE" and we tried to get over it. For a few days duck-head lived a life apart from the umbrella - while Frost kept suggesting I glue it. To my mind this was clearly impossible.
To make the best of a bad situation, I suggested we put a dinosaur head on the umbrella to fix it. Wren is very happy with the godzilla head Josh attached this evening. 
Skateboarding
Today, we walked to Top Pot for donuts and Frost brought his skateboard with him. On the first slight incline he rolled down without falling off. He was very tentative and wanted lots of reassurance about how well he was doing. After a few rolls he learned how to steer the board and went down some steeper hills. He was very pleased and after the donuts he hopped on his board with great confidence. He even learned to steer to avoid holes in the sidewalk. After each descent Wren ran down the hill towards Frost to "bring him back".
Friday, January 9, 2009
New Flu resistant to Tamiflu
This sort of stuff didn't use to bother me. Is it growing old or having children that makes me anxious at this type of news?
Last winter, about 11 percent of the throat swabs from patients with the most common type of flu that were sent to the Centers for Disease Control and Prevention for genetic typing showed a Tamiflu-resistant strain. This season, 99 percent do.
“It’s quite shocking,” said Dr. Kent A. Sepkowitz, director of infection control at Memorial Sloan-Kettering Cancer Center in New York. “We’ve never lost an antimicrobial this fast. It blew me away.”
The single mutation that creates Tamiflu resistance appears to be spontaneous, and not a reaction to overuse of the drug. It may have occurred in Asia, and it was widespread in Europe last year.
Wren had the shot(s)
Nurse Penny came to our house yesterday and gave Wren his Synagis shots. He weighs 27lbs 9oz which means he needs 1.8ml which is two shots. After reading Jeanette's (Grace's Mom from our support group's) articles on pain management I am asking our pediatrician for a prescription for the topical pain reliever to minimize discomfit during the shots. They are particularly large ones.
The Synagis protocol takes about 30 minutes. They have to weigh the child, check vitals, draw the vials, administer and then wait 15 minutes in case of a very very rare anaphylactic reaction. Wren had no reaction other than to check it was "all done!" Then he was happy. Last night he gave his bandaid to dinosaur at bathtime. New Dinosaur is Very Long Dinosaur and since the bandaid had a little blood on it from the shot "new dinosaur has owie on neck. Has BLOOD!!!!" The "has BLOOOOOD" was repeated a few times until he was "all better".
Do it like a crane
Wren really impressed me this morning. Not only did he sleep through the night for the first time ever... (8pm till 6.15am) but he helped himself to a drink from a sports bottle by his bed. When I went in in the morning he told me "I get it [the water] like a crane" and demonstrated with his arm how he reached over the rails to get it. I shall have to leave it there in future and hope he doesn't splash it around the crib. He always makes sure snuggle-bunny gets a drink when he does.
Mommy is in Therapy
I went to see 'my' therapist this morning. She is a buddhist 'psychotherapist' so we focus on ways of being and identifying what is arising. I haven't been to see her for over a year and it was nice to pick up again. My hope in going to see her is that I can figure out how to get from being a full-time mommy to having some of my own needs met by working part-time. My homework for the next few weeks is to do "open-ended" research into local non-profits with an international focus which is where I would like to work next. She helped me identify lots of reasons why I find it hard to start AND some ways to overcome them by making this into a research project [=happy and exciting] rather than a test of self-promotion [=bad and tiring].
Playgroup for Wren
I am very excited to have some offers of playmates for Wren. I am going to see if we can work out a time to play with some friends from our heart support group and perhaps a couple of toddlers we knew from our old playgroup. Wren is not going to know what to do with children under 4 years old!
The Synagis protocol takes about 30 minutes. They have to weigh the child, check vitals, draw the vials, administer and then wait 15 minutes in case of a very very rare anaphylactic reaction. Wren had no reaction other than to check it was "all done!" Then he was happy. Last night he gave his bandaid to dinosaur at bathtime. New Dinosaur is Very Long Dinosaur and since the bandaid had a little blood on it from the shot "new dinosaur has owie on neck. Has BLOOD!!!!" The "has BLOOOOOD" was repeated a few times until he was "all better".
Do it like a crane
Wren really impressed me this morning. Not only did he sleep through the night for the first time ever... (8pm till 6.15am) but he helped himself to a drink from a sports bottle by his bed. When I went in in the morning he told me "I get it [the water] like a crane" and demonstrated with his arm how he reached over the rails to get it. I shall have to leave it there in future and hope he doesn't splash it around the crib. He always makes sure snuggle-bunny gets a drink when he does.
Mommy is in Therapy
I went to see 'my' therapist this morning. She is a buddhist 'psychotherapist' so we focus on ways of being and identifying what is arising. I haven't been to see her for over a year and it was nice to pick up again. My hope in going to see her is that I can figure out how to get from being a full-time mommy to having some of my own needs met by working part-time. My homework for the next few weeks is to do "open-ended" research into local non-profits with an international focus which is where I would like to work next. She helped me identify lots of reasons why I find it hard to start AND some ways to overcome them by making this into a research project [=happy and exciting] rather than a test of self-promotion [=bad and tiring].
Playgroup for Wren
I am very excited to have some offers of playmates for Wren. I am going to see if we can work out a time to play with some friends from our heart support group and perhaps a couple of toddlers we knew from our old playgroup. Wren is not going to know what to do with children under 4 years old!
Tuesday, January 6, 2009
More Synagis info
I spoke with our case manager at the Insurance company. She said that they pay $1060 for Synagis per dose. This does not include the cost of nursing help or staff to administer the shot. We have to pay our out of pocket deductible for the year for pharmaceutical and in-surgery charges because it is so early in the year but I think we usually pay that over the year anyway.
More to think about.
More to think about.
Synagis or No Synagis?
I drove through the remains of last night's snow to take both boys to the pediatrician today. Frost had a plantar wart frozen off and Wren had his 2 year check-up. Wren is doing well in all the Normal Baby things. He is developing normally in all areas and was ahead of the curve in his ability to jump up and down on the spot. He also understood all the pediatrician's instructions to "lie on your back", "roll over" and "take big deep breaths now" which pleased her a great deal.
Stats:
Stats:
- 36.5 inches long = 90th percentile
- 27 lbs 9 oz = 45th %tile
- 19 7/8 " head circumference = 85th %ile
- hematocrit normal (11.8 up from 11.3 pre-surgery)
Here is Frost having his wart frozen while he squeezes Wren's raccoon.
Shots
On the way to the pediatricians Frost was begging to have a shot himself. He said that if he could have a shot he could show Wren it was OK and how to do it. I was a bit taken aback by this but when we came into the doctor's room he asked again. She checked the chart and found he did need a shot - his Hep A booster and Hep B (one of those I refused early on).
Frost had his shots first and managed not to cry, just to say "ow" rather plaintively while sucking vigorously on a candy-cane I gave him as an incentive during the nitrogen-freezing of the wart.
Wren received Hep A & B and varicella (another I had refused for Frost until Wren's CHD). Wren was very sad afterwards and said "go home, all done, get dressed" in one breath. Thankfully it was all done.
The Synagis Question
On our cardiologist's recommendation (Dr Olson) we had asked our pediatrician to order Synagis this year. Apparently the recent surgery and the ongoing haemodynamic disturbance meant that Dr Olson feels "he could get pretty sick" if he contracted RSV. Synagis is made from immunoglobin and each shot (for a 2 year old) costs around $4,000. He would need 4 doses this year.
This is the status of the application:
1) December - applied for insurance coverage for Synagis.
2) Cover REFUSED (December 10th)
3) Appeal placed by pediatrician (on my request). Cardiologist submitted requested evidence.
4) Insurance said approval on appeal UNLIKELY. Ped notified cardiology about refusal and asked "how far to push the appeal."
5) Card responded that since he is now 2, we need not push all the way.
6) Discussed with us and we decided no Synagis - Wren would be OK without it. Ped suggested we avoid big crowds of children and regular LARGE playgroups to reduce risk of RSV and respiratory problems.
6) Today, insurance faxed APPROVAL for 4 months of Synagis. Ped very surprised.
7) Ped notified Card about what to do. He said emailed "good. He should get it "he could get pretty sick if he gets RSV."
8) Ped notifies us and asks what we want to do.
So, my question is "Shall we order Synagis for Wren?" Its been approved but he may not need it. He IS 2. It is painful. It is very expensive [for insurance]. I shall have a talk with Joshua and make a decision. I think our insurance will cover home-help doing it (which means they send a nurse to give him the shot at home rather than visiting a clinic) which is much less stressful for all of us.
Socialization
Apparently the one area our pediatrician would like us to do something is in Wren's social life. She noticed that he is very social and wants to make sure he has some interaction with peers (other toddlers). He tends to run around with nerf guns and knows Indiana Jones, Transformers and Batman so she is probably right in asking if he has babies to stack blocks with. She suggested we set up a small playgroup at home rather than join a preschool playgroup to avoid the germiness of big playrooms. I shall see what I can figure out. Any toddlers want to play with Wren? He plays well and we can put away the shark guns.
Dentist
We have also been asked to set up a first dentist visit for the next 6 months. I have an amoxicillan prescription for a prophylactic in case of a tooth cleaning. Its to avoid endocarditis. Apparently early cleanings are a good idea to reduce build up of the kind of bacteria which can cause heart infection later on.
PS.
Here is the snow last night!
Monday, January 5, 2009
More Christmas and More Snow
This will be no surprise to you in Seattle but its snowing AGAIN. We have another few inches on the ground and its still drifting down. The weather reports are for a thaw overnight but I am not sure of that myself. I know many of you are hoping for school tomorrow, so we shall have to see.
Odyssey 1 & Visiting Tacoma
Meanwhile, we have had a fun few days. On Friday we went down to Tacoma to visit Shawn and Sarah and spent some time at Odyssey 1, an arcade and climbing gym for kids that is fairly near their house. Wren and Frost loved Odyssey. Frost ran around until he was red in the face and Wren climbed high into the Under 4 climbing platform where we could not follow. He was laughing and peeping through the mesh walls and out the plexi-glass windows of the tunnel compartments. He "did it self" all the time. He also enjoyed hitting the ducks in the little arcade and pulling the tickets from machines after a game. Skee ball is another great favorite of his although his throws never reach a target.
Another little Christmas
Today felt like Christmas. Wren received gifts from Heather & Kyler and Laurie's family. He was very excited by some dinosaur transformers that Kyler passed on to him. One of them is causing us some hilarity. When transformed from a dinosaur it becomes "dinosaur pen*s guy". I know that can't be right but no matter how I manipulate it I cannot make that big ding-dong disappear! Here is dinosaur-pen*s-guy and Wren facing off over breakfast.
It is also a particular good season to go to thrift stores. All those toys displaced by Christmas gifts have found there way out to the charity pile and I picked up some lovely toys for Wren at Value Village. His favorite is a large Bob the Builder Scoop truck which says "are you ready" loudly.
Wren's is also enjoying a duplo airport and airplane which I bought on Craigslist. The game evolved from a game with a big cardboard box in which he sits in the box and pretends to be a pilot flying an airplane to "the mushrooms" (a poster on the wall) or "to see ganny" [in Australia]. Aeroplanes are all about Granny in this house! Now he plays guys going on the airplane, loading suitcases and getting off. Sometimes they "see ganny" other days they fly around aimlessly to load and unload packages.
I shall try and post some pictures tomorrow.
Odyssey 1 & Visiting Tacoma
Meanwhile, we have had a fun few days. On Friday we went down to Tacoma to visit Shawn and Sarah and spent some time at Odyssey 1, an arcade and climbing gym for kids that is fairly near their house. Wren and Frost loved Odyssey. Frost ran around until he was red in the face and Wren climbed high into the Under 4 climbing platform where we could not follow. He was laughing and peeping through the mesh walls and out the plexi-glass windows of the tunnel compartments. He "did it self" all the time. He also enjoyed hitting the ducks in the little arcade and pulling the tickets from machines after a game. Skee ball is another great favorite of his although his throws never reach a target.
Another little Christmas
Today felt like Christmas. Wren received gifts from Heather & Kyler and Laurie's family. He was very excited by some dinosaur transformers that Kyler passed on to him. One of them is causing us some hilarity. When transformed from a dinosaur it becomes "dinosaur pen*s guy". I know that can't be right but no matter how I manipulate it I cannot make that big ding-dong disappear! Here is dinosaur-pen*s-guy and Wren facing off over breakfast.
It is also a particular good season to go to thrift stores. All those toys displaced by Christmas gifts have found there way out to the charity pile and I picked up some lovely toys for Wren at Value Village. His favorite is a large Bob the Builder Scoop truck which says "are you ready" loudly.
Wren's is also enjoying a duplo airport and airplane which I bought on Craigslist. The game evolved from a game with a big cardboard box in which he sits in the box and pretends to be a pilot flying an airplane to "the mushrooms" (a poster on the wall) or "to see ganny" [in Australia]. Aeroplanes are all about Granny in this house! Now he plays guys going on the airplane, loading suitcases and getting off. Sometimes they "see ganny" other days they fly around aimlessly to load and unload packages.
I shall try and post some pictures tomorrow.
Sunday, January 4, 2009
Why is it so cold this summer?
As we were driving to Matthew's for a playdate Frost asked me "Shannon, why is it so cold this summer?"
I concentrated on the four-way stop for a little while trying to parse the question. Outside drifts of snow remain from the last storm and only the evergreens are in leaf.
Shannon: What tells you its summer right now?
Frost: Well, it is 2009 now. Daddy and I even counted down 10, 9, 8, 7, 6, 5, 4, 3, 2, 1..... 2009!!!
Shannon: Uh huh? And what are the seasons of the year?
Frost: There is summer, winter, spring and fall.
Shannon: Its summer, fall, winter and ..
Frost: Well, I was just TELLING you what they ARE not putting them in ORDER.
Shannon: Ok. Do you know what makes seasons change?
Frost: The earth moves around the sun.
Shannon: And sometimes we are closer to the sun and the angle of the earth makes us get a bit more sun in the day and it gets warmer which is summer.
Frost: I KNOW.
Shannon: Well, it takes a long time for seasons to change. It happens slowly. So its just started being winter and it will go on for a long time.
Frost: So its winter?
Shannon: Yes.
Frost [pause]
Shannon: It will be spring in March but it will only be summer and really hot much later. It will be about 20 more weeks till anything like summer.
Frost: So its winter?
Shannon: Yes.
Frost: Oh.
Frost's Obsession with Graphic Novels
Frost is 7 and he is obsessed with graphic novels. He reads books of other types but he will read the same graphic novel (aka cartoon) 7 or more times. Here are the books and graphic novels he has read recently and those he keeps reading like candy again:
Diary of a Wimpy Kid X7
Diary of a Wimpy Kid: Rodrick Rules X7
Warriors - Graphic Novel version X2
Otto Undercovery: Canyon Catastrophe
Otto Undercover: Born to Drive
Jeremy Thatcher, Dragon Catcher
Guiness World Records 2009 (Mum, he bought this with your Christmas Money - it has 3D glasses and many gross records)
The Big Bad Book of Bart Simpson X10
The Big Book of Bart Simpson X10
The Big Book of Simpsons Barn Burners X10
Lego Catalogues for the past 4 years (reads prices, model information and makes LISTS of those he wants)
Warriors - Into the Wild (reading the book version now)
All Captain Underpants books (many times)
Warhammer Dwarf Army Handbook
The Ethics of Blogging about our Kids
I have been doing a backup of files on my computer and uncovered the old "journal" I used to keep about Frost when he was 2. It is a wonderful record of the year he was one - anecdotes and descriptions as well as reflections on the types of toy he enjoys and the games he plays with friends.
Reading it has made me wonder about the similarities and differences between blogging and writing a journal. I think that the main difference is the audience. When I wrote a journal about Frost I imagined him reading it when he was older and smiling when he remembered or learned about his younger self. The audience of this blog includes family and friends who would find this interesting, but also many who are concerned with the life of Wren and his heart issues. One audience (the journal) is relatively private and the other is more in the public domain. I am wondering whether I could write a reflective entry in a monthly journal for Frost which I keep on the laptop and draw on the anecdotes and I events I share here to make a bit of story about his life which is out of the public eye as a way to respect both voices.
People have often asked me how I feel about blogging about Wren and his heart - whether I have privacy concerns. The answer is "no, not yet." When you read journal articles on Shones Syndrome written 10-15 years ago you find a very high mortality for kids like Wren. In many ways, he and others of his generation of kids with complex CHDs, are the first to survive with relatively normal lives. To me, it seems that the information and courage I gain from reading about other 'heart' kids more than compensates for having his medical experiences shared and it helps me focus on the many fun and happy times we have despite the stress of the perenial concerns.
May I change my mind as he develops more concern for his own privacy? Yes. I reserve the right to be fickle and start writing about my vegetable garden and attemps at raising poultry instead.
I concentrated on the four-way stop for a little while trying to parse the question. Outside drifts of snow remain from the last storm and only the evergreens are in leaf.
Shannon: What tells you its summer right now?
Frost: Well, it is 2009 now. Daddy and I even counted down 10, 9, 8, 7, 6, 5, 4, 3, 2, 1..... 2009!!!
Shannon: Uh huh? And what are the seasons of the year?
Frost: There is summer, winter, spring and fall.
Shannon: Its summer, fall, winter and ..
Frost: Well, I was just TELLING you what they ARE not putting them in ORDER.
Shannon: Ok. Do you know what makes seasons change?
Frost: The earth moves around the sun.
Shannon: And sometimes we are closer to the sun and the angle of the earth makes us get a bit more sun in the day and it gets warmer which is summer.
Frost: I KNOW.
Shannon: Well, it takes a long time for seasons to change. It happens slowly. So its just started being winter and it will go on for a long time.
Frost: So its winter?
Shannon: Yes.
Frost [pause]
Shannon: It will be spring in March but it will only be summer and really hot much later. It will be about 20 more weeks till anything like summer.
Frost: So its winter?
Shannon: Yes.
Frost: Oh.
Frost's Obsession with Graphic Novels
Frost is 7 and he is obsessed with graphic novels. He reads books of other types but he will read the same graphic novel (aka cartoon) 7 or more times. Here are the books and graphic novels he has read recently and those he keeps reading like candy again:
Diary of a Wimpy Kid X7
Diary of a Wimpy Kid: Rodrick Rules X7
Warriors - Graphic Novel version X2
Otto Undercovery: Canyon Catastrophe
Otto Undercover: Born to Drive
Jeremy Thatcher, Dragon Catcher
Guiness World Records 2009 (Mum, he bought this with your Christmas Money - it has 3D glasses and many gross records)
The Big Bad Book of Bart Simpson X10
The Big Book of Bart Simpson X10
The Big Book of Simpsons Barn Burners X10
Lego Catalogues for the past 4 years (reads prices, model information and makes LISTS of those he wants)
Warriors - Into the Wild (reading the book version now)
All Captain Underpants books (many times)
Warhammer Dwarf Army Handbook
The Ethics of Blogging about our Kids
I have been doing a backup of files on my computer and uncovered the old "journal" I used to keep about Frost when he was 2. It is a wonderful record of the year he was one - anecdotes and descriptions as well as reflections on the types of toy he enjoys and the games he plays with friends.
Reading it has made me wonder about the similarities and differences between blogging and writing a journal. I think that the main difference is the audience. When I wrote a journal about Frost I imagined him reading it when he was older and smiling when he remembered or learned about his younger self. The audience of this blog includes family and friends who would find this interesting, but also many who are concerned with the life of Wren and his heart issues. One audience (the journal) is relatively private and the other is more in the public domain. I am wondering whether I could write a reflective entry in a monthly journal for Frost which I keep on the laptop and draw on the anecdotes and I events I share here to make a bit of story about his life which is out of the public eye as a way to respect both voices.
People have often asked me how I feel about blogging about Wren and his heart - whether I have privacy concerns. The answer is "no, not yet." When you read journal articles on Shones Syndrome written 10-15 years ago you find a very high mortality for kids like Wren. In many ways, he and others of his generation of kids with complex CHDs, are the first to survive with relatively normal lives. To me, it seems that the information and courage I gain from reading about other 'heart' kids more than compensates for having his medical experiences shared and it helps me focus on the many fun and happy times we have despite the stress of the perenial concerns.
May I change my mind as he develops more concern for his own privacy? Yes. I reserve the right to be fickle and start writing about my vegetable garden and attemps at raising poultry instead.
Friday, January 2, 2009
Happy New Year
I am wandering around half asleep this afternoon - it feels like one of those days on which we set the clocks back. I guess this is from going to bed at 11.30pm!! I almost made it till midnight. Frost stayed up till 1.30am after going out to a party at Carrie and John's house (of Petra fame) but I was surprised he did not fall asleep when we returned earlier.
I could not resist posting this picture of Wren's birthday cake (birthday was a couple of weeks ago). Mum sent it to me and I have only now been dealing with my inbox. It was going to be an excavator but became a bulldozer due to Technical Difficulties.
Happy New Year everyone and may the poor get richer, the racoons less voracious, calories less fattorific, heart defects less serious and the weather less weathery. Oh, and how about some world peace and discount airfares to Australia while we are at it.
I could not resist posting this picture of Wren's birthday cake (birthday was a couple of weeks ago). Mum sent it to me and I have only now been dealing with my inbox. It was going to be an excavator but became a bulldozer due to Technical Difficulties.
Happy New Year everyone and may the poor get richer, the racoons less voracious, calories less fattorific, heart defects less serious and the weather less weathery. Oh, and how about some world peace and discount airfares to Australia while we are at it.
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