Saturday, December 29, 2012

We're Melting...

We are currently going through a heatwave and the temperatures are stifling, energy-draining, and unusually for Perth, fairly humid. There's not much we can do but wait it out. The extreme temperatures should go down by the new year but we'll have more of it in the months to come. I am more of a cold-weather girl so this is just about all I can take. Victor seems to be bothered by the heat too, although Felix doesn't seem to mind.

Our new house has ducted air conditioning, which is evaporative. It helps a lot, especially if you are sitting down and resting in a place right under the vent, but it doesn't lower the temperature in the house by much. In the back yard we have a large undercover area with a ceiling fan, which is where Felix has been playing when he wants to go outside, although I do keep him inside for most of the day.

So far our strategy is to crank up the air conditioning system, do plenty of water play outside, eat icy poles and watermelon, and shut the blackout curtains in an attempt to keep the hot sun out.

I will never forget the summer of 2009-2010, when Phil and I lived in Geraldton. It's about five hours north of here and much hotter. I was almost due with Felix and was about the size of a small island, our house had no air conditioning (we eventually did get a small portable unit) and the temperatures were frequently within 40-45C. (That's 104-113F). I resorted to wetting cloth, such as wash cloths or small towels, and freezing them. Then I would put the frozen cloth on the back of my neck and on my forehead, and try to not move much.

We haven't quite reached that stage yet, and I am looking hopefully at the weather reports telling me that things should cool down by the middle of next week.

Poor little Victor has been uncomfortable and sweaty though. I actually noticed what looked like a fine, white powder in his hair the other day, and I realised it was salt from his sweat. He is tasting extremely salty these days. Saltier than the ocean. It must be because he's been sweating, although it really started becoming noticeable a few months ago. I washed his hair that night but the next day it was full of salt again. His hair is quite dark so the white salt is easy to see if you look closely. I hope it becomes less noticeable as his hair gets longer!

Any other ideas to help us stay cool?

Victor eating watermelon in his little mesh feeder, watching Felix run around outside.

I have no idea why Felix is standing in the flower bed. Please excuse the mess as we're still organizing the back yard!

Wednesday, December 26, 2012

Merry Christmas!

Merry Christmas everyone! I hope you all had a wonderful day. This year was very special as it's Victor's first Christmas, and Felix's first as a big brother.

The lead up to Christmas started a month in advance with the arrival of a very cool advent calendar made by their Aunty Lulu.

Inside each box was either a small toy or chocolate/jellybeans. The toys included finger puppets, a toy hedgehog, a mini ceramic mug with Santa on it, toy cars and Christmas tree ornaments. I think I was just as excited and curious as they were each day to see what would be inside the next parcel.

Felix and I did a little bit of Christmas craft, not as much as I'd like because we moved house in early December so we were a bit too busy. We still made a paper chain, a wrapping-paper tree, and Felix did lots of stamping with Christmas-themed stamps and paint.

Felix was very excited about Santa's arrival and has practically memorized 'The Night Before Christmas' (really, he's pretty good).

Looks like they got on Santa's nice list this year!

Our little tradition is to have apple muffins for breakfast on Christmas morning, which lead to a bit of an issue when Phil made them this morning. The pavlova which had been sitting in the oven all night to cool may have been cooked twice when he went to pre-heat the oven...whoops. Luckily it turned out alright!

We headed out to my aunt and uncle's house for lunch with all the family, and had the traditional hot turkey and ham in 40 degree heat (that's 103 Fahrenheit).

Christmas continued into Boxing Day as usual, as we headed over to my Dad's house for Christmas round 2. Ham, salads, and a mountain of desserts followed by a swim in the pool. It was Victor's first real swim, and the first time Felix really started getting the idea of kicking his legs to swim. I have a feeling we'll be back to visit here a lot more now that the summer is really starting to heat up!

Saturday, December 22, 2012

I'm Still Really Angry

Before Victor was diagnosed and everything was normal and fine, we saw a child health nurse which is what's usually done when you have a baby. Their job is to come and visit you on baby's 10th day of life, check to see how things are going, write it all down in the 'Purple Book' which is the child's health record and give you 'helpful' tips on how to care for the baby. It's a pretty simple job.

Unfortunately, the child health nurse I got with Victor was completely incompetent even for this simple task.

When she came to visit us when Victor was 13 days old, we placed him on the scales and saw he had actually lost weight. Losing weight is normal for a baby in their first few days, but they should start to re-gain that weight shortly after coming home from the hospital. The child health nurse did not seem concerned. She said it was probably due to us using a different scale, and we should weigh him again in a weeks' time. I told her about the strange poo I had been seeing: not at all like a normal newborn poo. She dismissed this concern.

This little series of events went on for four weeks. Every Thursday I would trek over to her clinic to weigh Victor, and each week he had lost more weight until he had dropped off the growth chart entirely.

At no point did she express any concern. At no point did she recommend I take him to a doctor. At no point did she say this wasn't normal.

By the time his newborn screening had been processed, he was four weeks old and still far below his birth weight. I look back on photos we took of him during that time, and I am shocked at how sickly he looked. Pale and gaunt, a rash covering his tiny expressionless face. He barely woke, he smiled wanly at Felix, he slept and ate and screamed until he was swaddled in layers of blankets.

I spent every night looking up possible illnesses on the internet. I told Phil that I was really worried about him but couldn't really explain why. Nothing I looked up seemed to fit, and I was being told by the nurse that he was fine, so I tried to not worry.

When we finally discovered what was wrong, it took me a while to remember the nurse. But then I did. And I started getting really, really angry at her. There was clearly something wrong with my baby. He was losing weight, excessively. He was not thriving. He was very unwell. The doctors and nurses at PMH were shocked that she had told me that was normal. They wondered what on earth was going on out there, in the child heath centres?

Even thinking about her and going back to the centre made me so upset that I became shaky, but he was scheduled in for his six-week checkup with her. I decided to keep the appointment and tell her what had happened.

"He has cystic fibrosis," I told her. "He is pancreatic insufficient, it's why he kept losing weight."
"Oh, so it's nothing we did then," she replied. "Nothing wrong with the milk or anything."
This was so far off point that I really had no idea what to even say back to that. She was so disinterested in me, my child and the diagnosis that there was really no point to us being there anyway.

I never expected or wanted her to diagnose Victor with anything. That is not her job and clearly beyond her scope. What I wanted her to do, was to say at some point, that his weight loss was not normal. That his poo (which she never looked at) was not normal. That I was not being crazy. That we should take him to see a doctor, find out why he was losing so much weight.

I am so grateful for that newborn screening. I don't want to think about what could have happened if we'd never screened for cystic fibrosis, and if I had continued to listen to that woman.

That is why I don't think she should have her job any longer. If she can't recognise the basic truth that a baby should be gaining, not losing weight, then what exactly is she doing there? What is she saying to other parents who come to her with concerns about their babies? Is she telling other parents that it's fine for their baby to drop right off the growth chart?

If she continues with that standard of work then she is going to seriously harm a child one day when she brushes aside the parents' concerns as well as clinical symptoms like she did with Victor and me.

We have not been to any further appointments with her, but I hate knowing she is still working there and still doling out advice to other parents. I hate that she ignored us completely, put my child's health in danger, and just couldn't care less about it. I want her out of that position before she does any more damage.

I don't think about her often, but when I do, I get incredibly angry and outraged. I have her full name and signature in Victor's heath record, and I'm seriously wondering if there's anything I should do about her.

Saturday, December 15, 2012

Our New House

We have been in our new house almost a week now, and I love it! Obviously things have been very busy over here so I have barely been on the internet at all but now I am trying to catch up.

We still have boxes to unpack and we're living in a vague sort of chaos but we're getting there slowly. The house has new carpet and paint, a large back yard for the boys to play in (including a big undercover area so they can even go out in the rain, and a vegetable garden), and it's close to family, friends, and walking distance to schools and shops. Love it!

The best part of all is that we're renting this place from my aunt and uncle, so we have a feeling of security knowing that this will probably be our house for a few years at least and that any maintenance issues will be resolved immediately. And it also means we have the freedom to treat this place like our own: we wall-mounted the TV (for both safety and aesthetic reasons), we can put pictures up on the walls, secure tall furniture to the walls, put up shelves, curtain rods, change light fittings, put grass down in the garden. All the little things that you can never usually do in a rental but really make it feel more like home (and in the case of securing furniture to walls etc, a safety issue with small children!).

I still can't believe this amazing opportunity has come our way. We are so grateful and feel very lucky.

The past few weeks have been crazy: I stupidly packed up the kitchen quite early so we've been living off take away food and microwave junk for a few weeks now. I made roast chicken and vegetables last night though, so back to normal life please!

Felix has his train table in his bedroom now, which he loves. In fact, all of his toys are in there...just! I really want to get some kind of storage unit for his toys and books.

Victor's room is looking a bit packed with all the furniture in it, including things we don't use (like the bassinet) so I am going to sort it out and put some things into our storage room...yes, we actually have a storage room. Finally. 

Both the boys have adjusted really well and haven't seemed to have noticed the change. They are both sleeping like usual and everything's normal during the day so that's a relief.

We have also left it until now to start Christmas shopping and preparation, mostly because we didn't want to cart more than we had to between houses during the move. So Felix and I have not done the Christmas craft I was planning! But we have some Christmas stamps and good-quality Christmas-coloured cardstock so we did some stamping the other day. I also picked up some themed fabric and will be making some decorations, and Felix picked out some adhesive foam letters and has been having lots of fun sticking those to paper to make a letter collage. Oh well, the supplies will still be here next year I guess!

And today we saw Santa...

Felix was a little overwhelmed but went and sat next to him. Victor was ready for a nap and seemed to like the fact that he was snuggled into velvet cushions!

Sunday, December 2, 2012

The Idea of School

It's suddenly dawned on me that Felix will be three years old in February, and therefore old enough to attend 'Pre-Kindy' or a 3 year old program, which is usually one or two mornings a week. This realization also made me think about school even more than I already do, as his future education has been on my mind almost constantly since before he was even born.

I didn't have the best experience at school, particularly primary school. Just about everything that could go wrong did go wrong. I had trouble making friends, and it's something that I'm still not good at. While it used to upset me, now I have just realised that I will always be a bit socially awkward and I'm ok with that.

I find the inherent structure of school to not be all that great for actually making friends. You are lumped in with a group of children who happen to be the same age as you and live nearby; that could very well be the only thing you share in common. It's not that you aren't given opportunity to interact with the other kids, it's more the issue of whether they are actually the people you would like to interact with. While it's good to be able to interact with all kinds of people and find something to talk about, it's a bit tough being stuck with them day in and day out for around seven years. I usually got along better with the kids I met in after-school activities.

The other main issue I had at school was the complete lack of help I had with maths. I have really struggled with maths right from the beginning. I'm not stupid; I just needed it to be explained in a different way. Everyone learns differently; the three learning styles are kinesthetic, visual and auditory. A good teacher will ensure they present the same lesson three different ways to cater to each student. Unfortunately this certainly didn't happen in the classrooms I was in as a child.

What really angers me though is that every primary school teacher I had knew very well that I needed serious help with maths. I needed a program, separate lessons, a tutor, something. Instead of getting help, I got yelled at and told that I had 'put a wall up' and 'hated maths'. Neither of these comments were constructive or helpful, and instead of making me 'work harder' or whatever the teacher's intention was, they sent me in the opposite direction so that by the time I got to high school I had given up completely.

The incompetence of the teachers I had in primary school is astounding and is definitely something I worry about with my boys. Because of my experience, I intend to stay very involved with their schooling and my goal is to know at all times exactly what is going on in the classroom. Perhaps this is smothering or naive of me, but the fact is they are my children and I know them much better than any teacher ever will. I have their best interest as my top priority, whereas the teacher has at least twenty other children to worry about as well. Even if she is the most caring, dedicated teacher on the planet, she just won't be as concerned about my boys as I am. And that's fine, it's not her job to be their parent, but the teacher will be in charge of their care for about seven hours a day and directing their education for at least a year.

I often read homeschool blogs or look at homeschool curriculums. It's something that has sparked my curiosity and continues to present many advantages the more I learn about it. And more recently, it has become something I find myself seriously considering. I previously believed that homeschooling was akin to brainwashing and that the children would never learn to interact in society; having several homeschooling friends has shown me that this is not at all the case. Homeschooling would give me the advantage of tailoring lessons to suit the boys' interests, ensure each subject is covered adequately, completely cut out the problem of them having to complete 'busy work' or homework (meaning work completed outside regular lesson times, cutting into family or leisure time). It would mean their day would be more interesting as we would be able to go out every day and continue the lessons in 'the real world' (this is something that really appeals to me).

One of the biggest advantages for me is the benefit posed to Victor. Obviously he is quite far away from going to school, but I am really stuck on this issue. Homeschooling would mean we would have plenty of time to fit in his daily physiotherapy. It would reduce his contact with sick classmates: while obviously we can't protect him from every person out in public with a cold (or worse), my experience working in child care has taught me that it is impossible to have a class full of perfectly healthy children. Someone always has a runny nose, a cough, a cold. In other locations it's easy to remove ourselves if there is someone nearby with a contagious illness, but it's more difficult in the confined space of a classroom where he can't just walk out. While we can certainly request to be notified if there is a sick child at school so we can go pick him up, I can't see this being practical at all. I see him missing a lot of school.

The other problem I think of is what if Victor's teacher does not understand the importance of keeping him away from anyone who is sick? I've found it difficult enough to explain to people as it is. If Victor catches a respiratory illness from someone he could potentially be hospitalized. Is it worth the risk?

Victor would also need to take enzymes at school. My preference would be for the teacher to have these at her desk so he could take them in class before lunch rather than go to the nurse's office, and then for him to take them himself when he is older. But I'm not sure if the school would allow that; they might require him to go to the nurse's office every time he eats anything. Then there is the fact that they might forget to give him enzymes. One time won't harm him, but if they are routinely 'forgetting' then it will cause problems for him.

Of course, this is assuming that his treatment does not change in the next five years, but of course it will. There will be additional medications to take, additional therapies. Cystic fibrosis is always going to be there and will always be part of his life, but I don't want him to be ostracised for it.

On the other hand, I also feel that regular school will be good for the boys. It is normal for me for children to go to a traditional school. I don't want to keep them in a bubble, and while I would ensure they did outside activities with other children and provide plenty of opportunity for interaction, I am worried that it would become too easy for me to shelter them too much. I also worry that I lack the organization to effectively homeschool. I want the boys to be able to teach me things when they come home from school and to learn about other points of view, even the ones I don't agree with. Having them in regular school would enable me to go back to work (ideally teaching, mainly for the good work hours and the fact I will get holidays off with them).

I have not really made a decision and it's probably something I will think about for a long time. At the moment we have defaulted to the local public school. It's small, which I like; the test scores are good, the website seems promising (no spelling mistakes!). I'm sure that once I give them a chance and get over my inherent mistrust of leaving my children with non-family members we will love the school. The other thing is that it doesn't have to be one or the other; we can see how things go and review the situation later if we need to.

Does anyone have advice for me on this topic?
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