Tuesday, December 9, 2008

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.

Monday, December 8, 2008

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.

Sunday, December 7, 2008

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.