Saturday, December 23, 2006

The un Christmas

It doesn't feel much like Christmas around here, although there is a lot of snow.

The Wife is a bit depressed. I guess we are still getting used to it. When we found out we we having twins, I was shocked and fearful that we couldn't handle two at once. I think she got used to it sooner than I and started to think and look forward to the unique relationship they would have with each other. There will be an even more unique relationship now, just not the one we expected.

It's two days before Christmas, and we still have not put up the tree. Neither of us are big on the outward displays about Christmas (trees, lights, etc) and with both of us at home, every day seems to blur into the next. Since neither of us have to go to work, days and time do not matter.

The only thing we need time for is to figure out what to watch on TV.

Thursday, December 14, 2006

Help for children with Disabilities

Kate at SDA put me onto this article at the Globe and Mail about a plan to allow parent to put up to $200,000 aside for their severely disabled children.

Although we have been in this position for 2 weeks, I have already considered the future for our daughter. The wife and I are both in our mid 30's, so it is likely that our daughter will live a long time beyond us. I would hate to put our other children under a financial burden after we are gone.

I hope this measure is implemented as soon as possible.

Monday, December 11, 2006

Significant is Significant

We had another meeting with Jocelyn's doctor today. Last week, he had the report which noted significant brain damage, but he had not seen the MRI or talked to the experts. I was hoping "significant" was not that significant.

It is. Jocelyn has almost no outer brain, that which controls higher functions. It seems the hope I was clinging to was unfounded.

In these cases, there is a high chance that she will develop seizures and babies in this situation have a 50-50 chance of making it through their first year.

As disturbing as that is, it is not the worst thing we may have to face. He brought up the subject of what measures we want to do to keep her alive, leading me to believe this is something we may have to face soon.

How can I make that kind of decision?

Parents are supposed to care for and protect their children. How can I not do everything possible to protect her? Yet, if her quality of life is so poor that she will never talk, eat, walk or even be aware of what is going on around her, is it really best for her to keep her alive artificially?

I do not want to have to face these decisions.

Sunday, December 10, 2006

Bittersweet Babies

One of the things parents take joy in is the development of their babies. Their first word, their first steps, their first smile.

Last week, Katherine started to communicate with us. She smiles and makes different noises as I look at her. She tries to repeat the sounds I make and laughs when I laugh at her.

However, even through all the wonderment I feel, there always exists a bit of sadness in the back of my mind. Will Jocelyn ever do these things? Will she ever smile at me? What will her life be like? And will I be able to deal with it?

That sounds a bit selfish to me, but my biggest worry is about the wife and I, and will we be able to handle this.

Friday, December 08, 2006

A Day in the Life

Caring for children is difficult.

Both the wife an I are at home, and I still find it a draining experience. A guy I know has twins that are a few months older than ours, and his wife stays home alone with them. I do not know how she does it.

We usually get up around eight am. The girls sleep until about then. Katherine usually sleeps the whole night, from 11 pm, Jocelyn gets up usually once at about 3 or 4 am.

Overall, not much to complain about there. Ours are pretty good compared to other horror stories I have heard.

The problem comes during the day. I feel like I spend my whole life in the living room. There are days when I do not go outside. The wife and I look forward to running out of something, so someone has an excuse to go out.

I have become very familar with the TV schedule. There is nothing much on in the morning, so we leave it on CTV Newsnet until I cannot stand their lefty crap anymore. That is usually about noon, so I switch to CPAC and watch what is going on in the House. After that, I usually flip it around between Seinfeld, and Dr Phil or occasionally to the Food Network, as the wife likes their stuff. Before supper, the wife likes to watch Scrubs. Then it is into the evening schedule, where we just pick the best thing we can.

That is close to 15 hours of TV per day. It sickens me as well, but we are a bit stuck. As Katherine sleeps all night, we almost have to continuously feed her through the day. Jocelyn needs to be hooked up to her feeding machine every two hours, but she requires almost constant holding to keep her calm and relaxed. This means we just use the TV as something to look at while looking after them. The rest of the time is spent cooking meals, using the bathroom or having a shower (something I have yet to have today).

Needless to say, I am feeling fat, tired and generally down.

Hopefully it turns around a bit.

An Interesting perspective on Gay Marriage

A great post at The Politic regarding gay marriage.

Shane has some interesting points.

Tuesday, December 05, 2006

MRI Results

On Monday, we received the MRI results. They were not good.

Sometime during the pregnancy, Jocelyn's brain was denied blood, not allowing it to develop normally. She has areas in her brain where there is no brain matter, all of them in the outer brain, where all the higher brain functions are. I do not know how big these areas are, but they are described in the report as "significant".

We have to be prepared for the fact that she may never be able to walk, speak or acknowledge us. We have to be prepared for the fact that she may need to be institutionalized for most of her life.

Next Monday we will get a look at the actual MRI to see how big these spaces are and come to some sort of plan with how to proceed next.

Sunday, December 03, 2006

3 Month MRI

On Thursday, Jocelyn had an MRI.

I spent most of the day in the hospital. We had the first appointment in the morning and with babies under 3 months, they like to keep you after to insure there are no reactions to the anesthesia.

The MRI went well. She was done by eight am and woke up right after.

Tomorrow morning, we see the doc for the results.

We may get some idea what is wrong, or not. I am not sure what result I want. The truth is, I am hoping that we are not going to find anything wrong. It's a bit confusing. We know something is wrong. Her last MRI was abnormal, but they cannot tell how that abnormality will effect her or even if it will affect her (at least that's what they tell me). The brain is still a mystery, so I am hoping that her brain will compensate for whatever was the problem and she will develop normally. Finding something means my hope might be dashed. I think the wife is the opposite. She wants to have a name put to it so we can start doing something about it.

My bet is that tomorrow they will say they still see something wrong, but will have no idea what it means to her. This is probably the best result for me, as I can still hope but it is the worst result for the wife, as it leaves many questions.

Right now, it is obvious Jocelyn is different from her sister and behind in development. Last week, her sister started to smile and now responds to me making faces and noises at her. However, this does not mean Jocelyn has development problems, as she was in the hospital for a month. Being sick is not conducive to normal development and she can be expected to be a month behind her sister. She has given us some positive signs. She has been gaining weight her, cries are getting louder and she is becoming more interested in things going on around her. However, compare her to her sister, and you would not think they are the same age.

So, you can see why I still cling to hope. She is obviously not caught up yet, but she is showing signs of developing. The question is, is it enough and will she eventually catch up.

Tomorrow we will find out. Or not.