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.

ART

Wren loves making art. He draws with an intensity and stamina which is a bit addictive. In the morning he won't eat breakfast unless he is drawing and Heather told me he stuffed his lunch is his mouth as quickly as he could when she said he could only draw "after lunch".

At bedtime he sat on the floor and wanted to draw on paper on top of the books I wanted to read. When I left him alone for a short while he drew all over the door. I shall try and scan a few of his pictures tomorrow. They are mostly long spindly line drawing of 'dinosaurs' and 'keletons' and 'scary halloweens' plus some 'untents' [elephants] and robots. Occasionally, he asks me to draw on the same page he is using and invariably puts on a sad voice and says "not draw on WREN'S ONE". Apparently I fail to see where his drawing is located.

Here is Wren painting at home. He is wearing an old apron of Frosts that I have had hanging around for ages. He only started wearing this since our visit to the Children's Museum on Friday.


Wren loved the glass frame painting and squeegeeing at the Children's Museum art room. He stood there for a long time painting and removing paint then repeating the process again. We shall go to the Children's Museum again just to use the glass painting area.

Wren also liked the easels. We do not have an easel at home but I should get one this summer.


Finally, Yesterday we made some cookies and squeezed chocolate chips into the lemon snickerdoodle cookie dough because they were not wicked enough without them. Today was SUNNY and we did some gardening. I walked to U-village and Frost went on a sleepover to Isaacs. I did not realize how much I missed the sun until I saw it again.

Dizzy Lizzy / Lazy Daizy

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

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.

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".

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!

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.

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:

• 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!