Hospital records and ponderings

Yesterday the mailbox contained a large cardboard envelope. It was copies of Wren's hospital and clinic records which I had requested from Children's. Apparently, it is a good idea to keep copies of these records.

This got me thinking, and thus googling Shone's syndrome/complex and anomaly. These terms are used interchangeably for Wren's condition. I found a new blog about a boy wo is ten with Shone's. He has had 2 OHS. I also found a record of a survey of the medical literature:

"Louis, J. D., et al. - Conclusions: Long-term survival of patients diagnosed with Shone complex is excellent. Operative strategies for this complex group should be individualized. Mitral interventions may generally be deferred."

This sounded very encouraging. I stopped googling before I found something ominous. It made me realize that I am still very anxious about Wren's survival. I just wish our cardiologist would say something like that all the time. Long term outcome is EXCELLENT. EXCELLENT!!!!!!

I feel better already.

Finally, a family photo

On dark afternoons when the house is full of rumpusing boys and the avocado has hit the carpet I feel I am single parent. However, this is not true. Most days Joshua is at work doing diligent and productive labor to support our way of life (and of food dispersal). He also helps a great deal at night since he is nocturnal and I turn into a ghoul after 10.30pm.

ASIDE: It is an interesting psychological fact that after 10.30pm and until 2.00am I lose any semblance of being a good parent. Even Frost has noticed it:

"Shannon, why do you kiss me goodnight and put me to bed and say nice things but when I come out of the bedroom you are very angry? You have a Dr Jekyll side."

Its true. I exhaust my last nugget of happy Mummy at books and bedtime and any child waking before I have recovered some Me-Time and Sleep gets The Shark Parent. SNAP!!! It is at these moments that Joshua is particularly useful.

Last night Frost woke with a night terror (a nightly occurance when he is slightly roused when I come to bed) and was babbling about Not doing it and You Love Him. Joshua calmly reassured Frost we love him too and took him to pee and tucked him in. It is Josh's theory that night terrors are caused by a full bladder. I don't know why terror and peeing are associated. Perhaps it is a boy-thing. I didn't say anything except "wake UP" and "Argh" and "God, he needs to start sleeping in his own bed." See, I am a total ....

Which brings me back to the family portrait taken by mum on the front steps. There we are - Josh looking slightly sinister, me posing as usual in a futile attempt to look fabulous, Frost caught between expressions and so somewhat blank and Wren rather puzzled because his photographic disposition is still to be determined. For now, he just wants the camera.

Granny is G-O-N-E

We are very sad to have seen my mother back to the plane to Australia. According to my calculations she is about to touch down in Sydney on the long trip home. My only consolation is that we could talk about our plans for a visit at Christmas.

Meanwhile, we have the kitchen contractor and his crew in to demolish the kitchen wall and install patio doors between the kitchen and back yard. The wall has already been removed and the frame installed. It is ridiculous how light and airy the room is. Wren has been upset by sheets of plastic and reciprocating saws but managed to nap through much hammering. Frost has taken the day off to 'watch' and just finished watching a movie with Josh and is polishing off the jelly beans Granny gave him.

Night weaning strategies revisited

This morning at 5.30am I was reviewing the night weaning literature.

Option A: cold turkey aka frantic baby. You just stop nursing at night and hope he gives up within three days as is "usual". No specific references to 14 month olds who like to nurse twice a night and get up at 5.15am.

Option B: gradual withdrawal. The troops remain in the bed each night but the volume is slowly reduced. You try and respond BEFORE he usually wakes but at around that time. Theory is that he will not associate crying with the milk arriving. Some crying and complaining may result but at least you know you are not leaving him hungry. You can't give in because you think he's thirsty.

Option C: Strategic delays. Each night you respond to crying AFTER a set time. The time drifts later each night or so. Eventually you are only nursing at a wake-up time. This is not such a shock to the system but involves crying at the usual waking time.

I am leaning towards option C. I am thinking of starting with 3am as the deadline.

Last night was ludicrously sleepless. Frost woke at 12.30pm and needed help. Then again at 1.50 with painful legs (growing pains?). I gave him tylenol. Wren woke an hour later and nursed. Then again at 4.30am. I nursed him in exhaustion and he slept for all of 15 minutes before crying. After ignoring him a bit he quieted then cried. When I went in he was still clearly tired by crying. Ugh. I got him up but he has been cranky ever since. I am not cranky because it was just such a bad night that you have to shrug about it. I shall be hitting Zoka for a double later on.

Today is my first Monday workshift at school so Heather, the nanny, will reap the benefits of his early rising and get a long nap this morning. I may ask her to wake him so I can steal a bit of it later. We shall see.

Mum is still visiting and is reading to Wren and entertaining him which is why I am able to type right now. I have also had a shower and washed my hair, normally on the Do No Do list according to Mister W. Mum is also coming to school to do a short talk on her trip to the Desert in Namibia.




The sun should be rising soon and perhaps it will be another sunny day. The summer garden plan is in its draft stage and Joshua and I have begun the annual debate about whether to grow peppers. He tells me that broccoli is on the list. Both our kids love to eat broccoli.

I don't often post pictures of Josh but I am not a single parent. Here are Josh and Wren in the basement with Frosts replacement kite in the background. Kite #1 was lost out to sea on a KapKa camping trip one summer. We shall not revisit the pathos here.

Mum and the Moon

The blog has been quiet in the past few days because life has been extremely busy. My mother is with us for a visit from Australia and we have been dashing about and Doing Things before collapsing in bed in exhaustion. Meanwhile, Mum has been taking some wonderful pictures of Wren and Frost and a few passable ones of me.

Here are a few. First, Wren playing with the brio trains. He loves to help them along the track and push them through the tunnel.
Tonight, we watched the total lunar eclipse. Even Wren saw it before bedtime.

Wren was playing the drum before we tried to photograph him. Then he was less enthusiastic.
Wren likes to help unpack the Pioneer Organics box. Here he has the carrots and is biting them on the couch. He offered to let me bite them too.

Aah! He will play the drum after all!

Much better today

Wren seemed his usual self today. He spent the morning with Heather and enjoyed being outside. She told me a funny story about him in the garden. She noticed him standing very still making a strange clicking noise and pointing. He had been doing it a while and wondered what it was. When she went to where he was standing she realized he was watching a squirrel on the fence which was eating a nut (hence clicking which is his noise for eating).

He stood and watched the squirrel for a long time. For about ten minutes after it ran away he kept saying "bye bye" and waving at the place the squirrel was.

He is such a sweetie. At Value Village (thift store) his favorite area is the big bin of stuffed toys. He takes them out and hugs and pats them. Today he picked up a baby doll and stroked its head gently and patted it. I think we should buy him a baby doll to play with.

Sickie update

Wren no longer has a fever but has something viral. He couldn't sleep well last night and woke hourly after 10.30pm until 5am. He was awake from 12.30am-2am. This morning it took him a long time to stop crying.

However, today he has been a clingy but happy version of himself. He loves being outside and tries to run off up the street at the slightest opportunity. He rushes the front door, climbs down the porch steps AND the rocky steps to the street, looks back once to check I am following and heads up the sidewalk at a an almost run. It is clear that he is fed up after months of confinement.

I hope we can spend a lot of time outside next week or even on the weekend and I hope also that tonight gets me some rest.

Joshua has txted me saying: I am not going to let him cry for an hour tonight. I would rather be up all night with him.

He didn't cry for an hour solidly but it was close to that with us going in and out after midnight. Even nursing didn't put him to sleep.

I took Wren to the doctor today. She said he does not have any obvious signs of infection but it is good that the fever has gone down. Apparently it could even be the flu. She mentioned that if Wren got the flu they would give him Tamiflu (I always want to type Tamilflu..) to mitigate its course. She said they have not had a bad flu season so far this year but that the vaccine is not very effective because the A and B's have few matches. I have no idea what that means but it sounded bad.

In other news, my mother is due to join us in Seattle (from London) on Saturday but I am waiting to hear whether she will make her flight. She may have to stay on with my grandfather because he was overdosed with morphine from his morphine patch which the nursing home staff administered for back pain. The doctor has since pulled the prescription but it was touch and go for a while. We are very excited to see her but may have to wait a few more days.

Sick, Again

Wren has a low fever and is feeling miserable. He has a bit of a sniffle and and upset stomach. He is breathing a bit fast and grunts a bit although I think it is more from discomfit than difficulty breathing.

I hope it passes soon and no-one else succumbs to this latest virus.

Frost vs Wren

The boys have been fighting. Yes, a 13 month old can fight with a 6 year old. This morning he threw a huge rock at Frost's foot and bruised him. In retaliation, Frost taped Wren inside his lion playhut so that he couldn't escape.

Frost has learned that if he wants to get Wren out of a room he shuts him in the room. As soon as the door opens Wren rushes out of captivity and can then be locked out.

Wren grabs a pen and scribbles on Frost's robot drawing. Frost takes Wren's interlocking blocks away from him.

I tell Frost to go and play in his room and not bother Wren with his own toys. Frost cries... "But sometimes I want to play with his toys. I want to make something!"

I suggest he gives Wren something new to distract him then take the interlocking blocks to his own room and shut the door. Frost dumps a whole tub of toys at Wren's feet. Wren is not fooled and follows but is thwarted by the door. Minutes later Frost calls me to admire the smiley face he has made from interlocking blocks and lego. It is very happy and smiley.

Wren pulls it apart.

This time Frost doesn't mind because he was finished. Still, I empathize. I suffered the same invasions from my younger brother. I explain to Frost that sometimes it is hard to be a big brother because Wren wants to do everything he wants to do because he's his hero.

Frost says "I am a superhero and Wren is my side-kick. Or I am Batman and he is Robin."

Uh oh. I hear shouting and doors slamming and now Wren is crying. Oh, and the telltale rattle of bead curtain tells me that another battle has been waged.

Nutrition Appointments

Wren had two appointments this week to discuss his low weight gain and improving his calorie intake.

NATUROPATHIC ADVICE
Yesterday, we saw our Naturopath Sari. Overall, she said she would not be concerned if he did not have a CHD but she would like him to eat more and be a bit more interested. She felt that he may have a low appetite from the pneumonia he had and the stomach flu a few months earlier. She also worried about his intestinal flora after 2 bouts of antibiotics. So, she recommended:

Smoothies: Made with rice protein powder, ground almond meal or soaked almonds, pasteurized honey and good fruit.

200mg Vit C / day which is supposed to stimulate appetite.

Brewer's yeast in OJ.

Thymactiv homeopathic. I dropper full.

Oil in applesauce. In particular, 1/2 tsp/day or flax oil.

Nut butters and honey or barley malt or fruit juice concentrate made into cookies.

Sacroyses Florstar good intestinal flora.

She also recommended keeping on nursing on demand but offering these calorie and nutrient rich foods at each meal.


THE CARDIAC CLINIC NUTRITIONIST
The nutritionist we saw today was not concerned. She said as long as he isn't LOSING weight its okay. Weight gain can be slow but as long as it is occurring they are happy!!?? As it happened, Wren had eaten well today and weighed a wopping 22 lbs 15 oz which is 7oz more than 2 weeks ago. Its weird. I think it is a factor of the scales.

Anyway, she suggested we feed him 6 small meals a day - 3 normal mealtimes and 3 snack meals. She did not feel I should limit nursing but wanted me to feed him solids before nursing at mealtimes.

Her suggestions for calorie rich foods included: smoothies, Carnation instant breakfast, egg white milkshakes, ovaltine with cream added, anything with cream added, avocado, icecream.

She also gave me a list of expected servings per day which was utterly unrealistic. If Wren ate all that is intended he would be a hippo.

I am too tired to post more (Wren missed his PM nap and has been a fussy sleeper recently, waking at 4.30am today) but I feel better equipt and encouraged after the information from both 'experts'.