Asleep in the stroller

This is a picture of Wren with his dinosaurs. He loves to make "big 'lion' of dinosaurs" and "big lion of diggers." Some mornings we have played all these games before 6.30am.

Wren is fine today. His fever is all gone and now he has a fine rash on his legs. I think this means that he had a mild virus which causes the rash as it breaks down.

He is still very demanding but probably because he is so tired. He fell asleep in the stroller on the way to Pike Place Market after an hour at the Aquarium. I had a nap later and Granny had a few minutes on the couch. I am going to speak to our doctors about Wren's sleep and what we might be able to do. Joshua is not willing to go through crying. He thinks it does not work. I don't know.

Wren loved the big fish and octopus at the Aquarium. Here we are at the Christmas Tree Lot yesterday. BIG PINE CONE MUMMY!

Hysterical laughter

Wren has been up since 4.30am for the third morning in a row. I really cannot take it much longer but neither can Wren. He is very short tempered this morning but when I let him cry a bit longer before I went in (at 4.45am after nursing from 4.25am for 10 minutes.. ie leaving him alone about 8 minutes) he was distraught. He cried, made retching sounds and yelled "Mummy has gone away") I returned and sang to him off an on for 40 minutes keeping the room dark but it was not sleep. So, lets move on to the fun stuff again:

1) Premera denied our request for Synagis. I wasn't going to ask for it but Dr Olson thought he needed it because of the mitral regurg and pulmonary pressure plus being post-op and having a haemodynamically singificant heart problem. They said "No". Not sure if I will do anything about it.

2) Wren is speaking all the time. About the cake: Wren was looking at the cake box as we baked Granny's birthday cake. He said: "Cake is yummy, want to bite that"

3) Wren loves to pretend to be a digger operator. Anything long and thin can become a gear stick. He sticks a wooden prong into a lump of playdough and says: "Voom voom, operator". He also plays with a gear stick on granny's leg.

4) In the mornings, Mum does some stretches with Wren. I try and do a few too. During yoga Wren becomes very territorial and wants to take over the whole Yoga mat (I am getting both boys mats for Christmas). Yesterday he pushed Mum and said "Move Granny, that's my spot". Here they are sharing the mat for Downward Dog.


5) Our house has its fair share of stress at the moment. I get tense/angry much more quickly than I used to and Wren and Frost are VERY loud. Wren is especially demanding (not sure if its age or post-surgery behaviour). Yesterday morning at breakfast Wren was yelling and I was getting stressed and irritable. Frost made me laugh by saying:

"STRESS Monster
will eat
your happiness."

Its my new mantra. I am not sure whether it was aimed at Wren (who was eating and being a monster) or me (who was losing happiness from Stress and can be a monster). I think it is a universal truth so shall leave it there for all to share.

Support Groups and Censorship

Internet Searches and Sex Education
This evening Mum noticed Frost doing internet searches on random words. His words included "poop" for which he had found a number of disgusting YouTube videos. Josh and I realize is time to check our internet search settings and that SafeSearch filtering is on. This kind of search is possible as Frost's spelling develops. He has started to spell out sentences to me in much the same way I used to spell out covert messages to adults. I get quite tired listening to the long spelled conversations but it is an interesting new phase for him. Email is next!

In terms of risk, I asked Frost what he knew about Sex. Mum had been reading an article in the paper discussing the issue of whether to wait until a child inquired or to pick a time when you felt it was relevant. Frost gave us a pretty good definition and then asked why it was ok to talk about sex like this but not for him to watch Family Guy which talks about sex. Why is it ok to talk about the facts but not the jokes? I explained that you don't need to know all about it when you are a kid but that when you are older you learn more. Thankfully, at that point he had had enough and said we should talk about something else.

Alex and TAH-ra are coming!
I was giving Wren a diaper change when we heard the garage door open. It was Joshua returning from fetching Mum and Frost from the Seattle Children's Theatre production of The Wizard of Oz. They said it was fabulous. It was Frost's first visit to the theatre with us and he was quite excited.

"Dadda!" called Wren, when he heard the door.
"Who is with Daddy and Frost?" I asked.
"ALEX" said Wren with excitement.
"No, who is coming home?"
"Alex and TAH-ra!" he announced. I laughed. I had no idea he remember Tara's name.

Here is Tara having tea with us last weekend.



Support Group Meeting
This afternoon was our heart support group and we had a really big group of families attend - some of whom were new faces for me. It is always a great relief to be among people who understand the anxiety and the issues we face with Wren. One theme that comes up again and again is that when you have a child with a CHD it never "ends". In almost all cases parents continue to worry when everyone else thinks the show is over and the child is "fixed". While friends and relatives may think a successful surgery and no meds mean a child is "done" we know how many other issues and concerns lurk for us and never really relax.

Anyway, I did relax a bit in the meeting and enjoyed some Lindt chocolates and good company. We have recently formed a Guild to raise money for research into Congenital Heart Defects and are looking at ways to raise funds next year.

Small Fevers and Snuggle Bunny
Snuggle bunny is doing well to keep Wren comfortable. I have had to start waking Wren from naps because he has napped for 3+ hours for a few days in a row. Today I woke him after 2 hours. I blame it on Snuggle Bunny being too effective although he could be feeling a bit under the weather with his continuing low grade fever.



He also continues to wake super early. He sleeps 9 hours at night and 2-3 hours during the day. I would prefer to sleep till 6am and have less naptime. It doesn't seem to bother Wren but oh, it bothers me.

If Wren is feverless tomorrow we are going to take him to the aquarium. Otherwise I will be calling the clinic to see they want a blood draw to rule out endo-carditis. He is not acting at all ill and his 'fever' was never above 100.4 today, so I hope he is completely well tomorrow.

Doing better

Wren is feeling much better today. He hasn't had a fever much over 100 all day and was fine enough to go on two outings - to get a Christmas tree and to buy a gift for the family in South Africa.

The other big news today is that its HAPPY BIRTHDAY GRANNY. Mum is staying with us and today was her 61st birthday. We made her a lopsided birthday cake with lots of chocolate frosting and some dinosaur sprinkles. It was moist and tasty. We ate a delicious hungarian goulash-style roast Joshua made for dinner. We drank some South African red wine and enjoyed ourselves.

Will post more tomorrow with pictures.

Wren has a fever

Wren has a fever. Its 102.4 (39.1C). He is not seeming ill but I wish it would go away.

Clinic says to call on Monday if he still has the fever and to call before if it is very high or he shows signs of distress / more symptoms / I have concerns.

I am always concerned but it didn't seem helpful to say that.

What a time to enter Seattle Public Schools

Yesterday, I received an email inviting Frost to further testing for the Seattle Public Schools Accelerated Progress Program (APP).

Recently your child was administered the Cognitive Abilities Test (CogAT) as part of their evaluation for Advanced Learning programs. As a result of your child’s performance, he or she is qualified to take the reading and math achievement test (the Iowa Test of Basic Skills)

I had expected to be very excited about this as it suggests that Frost will qualify for the APP program for 3rd Grade. Unfortunately, this is a very bad time for a family from NE Seattle to contemplate APP or any school in our public school system. The NE is defined as a cluster for purposes of Seattle Public Schools school assignment. This means, we get priority in local schools. There are a few "all city draw" programs which are not based on where you live, APP is one of them. But students from other areas can apply for schools out of their cluster so enrollment is very uneven.

The reasons I am discouraged about our options are:

1) The elementary schools in the NE Cluster are full. Even though we live less than a mile from our reference school (Bryant) it is currently very over-enrolled and there is little chance of us getting in. We have no idea which school Frost would be assigned and are unlikely to get one close to us since these are among the most popular.

2) The Alternative School I loved when I toured (Thornton-Creek) is being relocated and reformed as a K-8 school. It will become larger but spaces are being promised to another school which is either closing or moving Far Far Away. This means it is unlikely Frost will find a place there either.

3) The Elementary APP Program which was housed at Lowell is being relocated further South and split in two. This means it will be of uncertain success as a program and would require Frost to travel 8.5miles by bus each way picking up kids along the way. I have no idea of the school bus route, but during traffic this would take me 30 minutes in my car so it seems reasonable to estimate one hour travel time each way.

I have no idea what we are going to do for Frost. I guess we will do the school tours in January and ask questions even though the schools / programs we will be seeing are unlikely to exist in their current configuration by the time Frost starts in Fall.

It feels like our kids are salmon swimming upstream and the engineers have forgotten to build a fish ladder. I haven't even applied yet and I am tired of the churn. Is this when I panic and apply to private schools too? Become Catholic? Get a job?

Playing Doctor

BY GRANNY:
Wren was playing a sweet new game with me today. The family stethoscope was found lying on the ground so I started a game checking on the health of the “stuffies”, Wren’s family of stuffed animals. Together he gently asked of the health of the 2 ferocious T-Rex dinosaurs, 2 baby blue hospital bears that had Band-Aids on them, and a large kitty. Their temperatures were checked, stethoscope used on their chests, they were laid down for a rest in hospital, stroked gently and then pronounced "OK now".
He was very involved. I said that he was the “doctor” and he liked that. Shannon hopes that this role play may help him with processing medical visits.
The question of bathing is another issue....

Here is Wren having a lovely time making a Christmas ornament with Kyler (and Heather).

Complexity

This morning I walked from the Pacific Science Center (where Frost and Granny were seeing 'Lucy' - the missing link fossil) to the Westlake Center. I was waiting at a traffic light within sight of the big shiny tree, the carousel and all that glitters, . A black woman with a plastic bag and lots of missing teeth smiled at Wren. I smiled back as you do with strangers.
She nodded at Wren. "I had a baby," she said "but my baby died."
I said "I am very sad to hear that. Was it long ago?"
She nodded.
The light changed.
"Have a happy day," she said.
I pushed Wren across the bumpy crosswalk clutching his new dinosaur with all the stories of our lives garbled in my head.

We really enjoyed the Macy's Christmas window with the trains traveling through snowy country. We really enjoyed the bus ride home.

Cardiology Clinic Rescheduled

I received a call from Jeremiah to say that Wren's Friday cardiology clinic check-up can wait until the 19th. It was schedule two weeks ago but we went in last week for an echo after he had a 3-day fever. Perhaps the fact the pericardial infusion is resolved means Dr Olson can wait a while.

We are happy not to go along again so soon.

Nursing a Toddler (AKA Wean rhymes with Mean)

When I was pregnant with Wren I signed up for a parenting email from Swedish Medical Center. Over the past months I have received these two, rather contradictory emails from the folks at Swedish. They are on the subject of NURSING TODDLERS. Last summer, a lady approached me by the swimming pool where Wren and I were watching Frost do swimming lessons. She invited me to join their support group for mothers nursing older children. I looked at her in shock. IMHO an 18 month old is not an older child in the nursing universe. Wren agreed and we thought no more about it.

Fast forward 6 months and this is a bit of an issue at home at the moment, not because I am embarrassed about nursing a big baby but because Wren doesn't sleep through the night, wants to nurse instead of eat and is a total tyrant about it.

These are some of his words on nursing:

When he wants to nurse instead of sleep. "Want milk NOW."
When he wants to nurse more instead of going to bed. "More milk. Want OTHERSIDE now."
When I tell him its "all gone". "Try? Try otherside now?"
When I tell him its time to eat lunch. "I do not want to. Want MILK now. Milk on couch!" [this is his favored place to nurse].
When I tell him I can't right now he starts sobbing, falls on the floor and screams "want milk."

I recall a story I read a while ago about a woman trying to wean her toddler. They were planning a trip by aeroplane and she suggested her son nurse before they left for the airport. When he replied that "I will have milk after we take off" she realized he had been nursed too long.

Anyway, here are those Swedish emails:

I

From Swedish Medical Center Parent Newsletter 11/25/08

Parenting Q&A
Q:
My daughter will be 2 years old next week, and we're still nursing. She shows no signs of wanting to wean, and I don't mind. We nurse early in the morning and at night as she goes to bed (and sometimes during the day), but I'm beginning to wonder if she's getting too old.

A:The American Academy of Pediatrics urges mothers to breastfeed exclusively for the first six months of life and to continue nursing to the first birthday, and as long after that as both mother and child desire. While nursing toddlers are not common in the United States, in much of the rest of the world they are the norm. While your daughter obtains most of her nutrients from other foods by this age, she still gains much from nursing: closeness to you and the calm it provides during her busy days. You can encourage her to wean when one or both of you is ready by finding other ways in which to be close and calm. Until then, enjoy your special times with your daughter.

---------------------------

My 2-year-old is still nursing, and I'm glad. But sometimes she asks to nurse in public and cries if I don't let her. How can I teach when it is okay to nurse and when it is not?

A:While the American Academy of Pediatrics applauds you for continuing to nurse your toddler as long as you both desire, the North American public is not always so approving. Nursing in public, especially when the child is a toddler rather than a small baby, draws attention and too often disapproval in our cities and towns. Your daughter may want to nurse, but you don’t want to endure strange looks and rude comments. Your daughter is old enough, however, to be asked to wait a little to nurse. Can you find an alternative activity that will help her to be patient? Perhaps a drink of water on a sippy cup or a bagel to chew on will hold her. Her emerging sense that other people may feel differently than she does, and awareness that their eyes may be on her, will help you to teach her that public and private behavior can be different.

I think that its encouraging that such a mainstream publication is facing questions about nursing toddlers but the part i want more information on is this:

"You can encourage him to wean when one or both of you is ready by finding other ways in which to be close and calm. "

Huh!

Try telling Wren that. If I am carrying him and rest him slightly sideways in my arms he starts sqwarking MILK. I am still trapped at home by the need to nurse him to sleep and recently have been required to come home around the end of naptime because of the tantrum Wren throws about waking if I am not there to fuel him up.

I feel I am ready to end the nursing relationship but he is not. What do you do in this situation? Josh and I said that he could have a few months after heart surgery. You know, you have to give him a bit of room. But I feel the leash is tightening not loosening. Symptomatically, the strap of one of my last nursing bra's snapped today and I feel this is a metaphor. The time has come and I am not going to buy another one.

Now I need to run home for Wren because he should be waking soon. Sorry for the abrupt conclusion (or lack thereof). This is part of the ISSUE.