Tuesday, December 11, 2007
Yesterday we took Jocelyn for her appointment with a specialist who focuses on the problems with her spine and hip. We got pretty much what we expected, but some, sort of good news. Although her spine is curving and will likely eventually bend her so it starts to compress her organs on that side, there is a small chance it may not progress any further. Also, it will take many years, (probably 4) before it gets that bad, so we have time. The same thing for her hip. Although it appears to be starting to dislocate, there is a chance it will progress no further. We have about 2 years before that becomes critical. We can pretend to be a normal family for a bit longer.
The real interesting part comes after talking about her. This is when he talks about us, the parents, and alternative therapies. Alternate therapies are those with no studies showing they work or do not work. Alternative therapies range from stretching (no studies prove that this will help with her hip) to all sorts of weird, witch doctor type stuff.
effect, something like 40% of people will report improvement from anything as long as they He did not propose or endorse any of these things. He made it clear it is up to us and that we must look at it. (The wife has been doing a lot of research on this stuff and seemed to know more about some of them than he did. Also, due to the placebobelieve it may help.) The only caution he gave us is the effect that alternative therapies can have on a marriage and families. There are people who have mortgaged their house to pay for this stuff. As well, usually one spouse wants to try anything while the other thinks there is no point, and this leads to serious problems when the family is poor and living on the street and one spouse thought it was a waste of money.
So, it seems that since there is very little we can do for our daughter, the biggest problem we face is dealing with the effects of that and the possible break up of our marriage/family.
For me, I want to do what is best for our daughter. To me, that seems to be making her as comfortable as possible. At this point, there is nothing we can do to treat her problem, only the symptoms. I am not willing to mortgage the farm when it won't address the problem.
If there was even a slim chance we could treat the situation with her brain, I might feel differently.
Friday, December 07, 2007
There has been some discussion of this issue at SDA and Halls of macadamia, two blogs which I frequent.
I wanted to give a bit of perspective on this issue from someone who may be facing it in the future. My own opinion of Mr. Latimer is that while I don't condone what he did, I can understand the circumstances. He has more than paid his debt to society and should be released.
A lot of the comments I have read on this issue come from people that I think have not examined the situation.
Look at your child. Bring up all the feelings you have for that child. All the love, the desire to protect, the feeling that you would do anything for that child. Now, imagine that when that child was 3 months old, you were told that, not due to anything that anyone did, through no fault of your own, it just being "one of those things", your child was severely brain damaged. Although that is not exactly true. The truth being that she does not have much of a brain to damage. In fact, you figure her brain is about 25% of her twin sister (the doctors don't tell you this, it is your estimate, based on the fact that her head is noticeably smaller than her sister and you saw the scans of her brain, and there was significantly more black areas (areas of nothing, just fluid), than white areas).
At your pediatrician's you ask how long she is expected to live. He says 5 years, 10, maybe 20, maybe more, we just don't know. However, he will tell you that he he has never seen a baby with this much damage survive (the doctor is in his sixties and has probably been practicing for over 40 years. He is well known throughout the city and is respected as a good doctor). He then suggests that you may want to consider how much you want to treat her when she gets sick. He tiptoes around the point by stating that in most of these cases, the baby gets pneumonia from fluid in the lungs and most parents deny extreme measures (ie antibiotics. (when did antibiotics become extreme?)) and after a few bouts of pneumonia, probably over a number of years, the patient dies.
Your wife drives home because you can't stop crying. And I mean crying, like uncontrollable sobs, while the words, "how can I make a decision to let my baby die" run over and over through you mind.
Fast forward one year. Your daughter is not in pain, but it is a struggle to get enough of the food she needs through the tube in her stomach. She throws up at least once a day, and you have spent the last year changing her feeding habits, formula, time and the rate in an effort to minimize it. When not asleep, she sounds as if she is fighting to breathe and not to choke. You have an appointment next week where you will discuss what to do about the fact that her muscle contractions are starting to force one hip out of alignment and she will probably dislocate it soon. Her spine is severely curved, even for a baby so young. At least she doesn't have seizures (they think she does not have enough brain matter to have them).
class or girl Now consider that, with such little brain matter, she is not going to get better. Her quality of life will not improve past that of a month old baby. She will never walk, talk, or feed herself. She will likely never reach for anything voluntarily, to form a desire to do something and then do it. She will never be able to say I love you daddy. You are not even sure what she can see or hear, although she does seem to, at times, turn towards the sound of your voice. You decide that you will take that as a sign that she knows that you are her dad and you will hold that as tight as you can.
However, you cannot live in a fantasy world all the time. You have to fact the facts. No amount of physical therapy, visual therapy, stimulation or anything is going to improve her quality of life, even though you do all of them. What else can you do? She is your child. Now, imagine forward ten or eleven years from now. The curved spine and hip are not going to get better. All they can do is slow the rate at which they progress. What will her hip and spine be like in then, if she is even alive? How much pain will she be in? What will her quality of life be like. Remember also that you have other children. You want their live to be as normal as possible. Do you want your other child to miss out on ballet and girl guides because of her sister? Do you want them to begin to resent their sister? What if your disabled daughter outlives you? She is your child, it is your duty to care for her, but do you really want to burden her sister with that when you die?
Welcome to my world.
Try putting yourself in Mr. Latimer's shoes before you condemn him.
We recently got high speed internet access. Before, I would spend much of the day connected to the net at dial up speeds, browsing blog, read news, etc.
Now the phone is free. This is a good thing, as now I don’t mess calls about Jocelyn’s medical appointments.
However, the down side is now I am rushing to answer the phone and am getting all the telemarketers.
Citibank is the worst. We don’t have any business with them at all, which I suppose is why they are so insistent. They got the wife’s name somehow and they call at least once a week. Of course, she is never here when they call, so they always say they will call back. I few times I pretended to be her, just to see what they want (They don’t even have her first name, just an initial, so you know they are selling something). They just want us to use their credit card with the “new, low introductory rate offer”. How stupid do they think we are? Nine percent for the first few months then up to 18.75% and a yearly fee. Some deal.
Once, I thought I would test them a bit (Sometimes its nice to talk to an adult) I said I was interested but my present credit card has no fee, and I want a lower average rate, what can you do for me? The silence on the other end was deafening. They actually hung up on me.
Of course, that gets tiring real quick. So after only a few days of answering the phone where 90% of the time it is Citibank, I have had enough.
The next time they call I am going to threaten them by saying I will blow an airhorn in the phone if they do not stop calling. A Man’s home is supposed to be his castle and time is precious. I shouldn’t have to spend a portion of that fighting off salespeople.
Oh, and don’t talk to me about do not call lists. I should not have to call someone to tell them to stop calling me. I should be able to tell them when they call not to call anymore.
Why would I ever want to be their customer if they do not respect my wishes not to call me?
Friday, November 16, 2007
I still believe it is easy in that respect, but it is the mental aspects that are the hardest.
You hear men (great fodder for comedy) talk about coming home from a hard day at work and the wife just laying into them about nothing, all mad about something very minor that happened days ago. They would chalk it up to hormones or something of that nature.
It's not hormonal, as I just experienced it.
For the last three hours I have been trying to get a few things done and make a few simple phone calls. Katherine has been very demanding of attention at the worst possible moments and cannot be distracted. I hate whining in children, and she can be very effective at it if she doesn't get what she wants.
After three hours of this I have a headache and I feel like I am going to snap. I just made a typo and I had an urge to throw this laptop.
I am angry. But I can't take it out on the children, because they do not know any better and then I would be a bad parent. The logical, or most readily available target is the wife.
If the wife can home right now I would find any excuse to start a fight so I could have an outlet.
Hopefully a telemarketer will call before she gets home so I can take it out on them.
Honey, if you are reading this at work, bring flowers.
Thursday, November 15, 2007
I was lying on the couch while she was climbing on me and she hit me in the chest and said "Da-da-da". It is not unusual for a child's first words to be da-da, and she has been saying that and much more for some time, but this is the first indication that it is not just random words. Of course, I have been pointing to my chest and saying "da-da" for months now, so it may just be random.
The wife, ever eager to rain on my parade, immediately announced that the other day Katherine hit herself in the chest and said "da-da", so it may be that she thinks that is the word for chest.
Either way, this will be the official date of her first word.
Thursday, September 06, 2007
I was in our living room and she was roaming. She moved into our bedroom and found some metal clothes hangers that were on the floor. Of course, everything goes into her mouth and she used the cut end to open a gash on the inside of her cheek.
I pieced this together after the fact. The first I knew of it was a loud scream and great gobs of blood in her mouth, over her clothes and on the floor.
Nothing too serious, and no trip to the hospital was required, but I have now experienced what it is like to hear a scream of distress from your child and come to find lots of blood from and unknown source.
Tuesday, September 04, 2007
Unfortunately, every activity in the pool is done with a song, which is the usual repetitive jingles of children's songs. Fortunately there are no other fathers in the group and none of my Army buddies are there to see me. My own view of my manhood takes a bit of a hit when I am singing songs that start with "The frog says.."
There are some hot moms out there. I am going to have to start working out again.
P.S. Thanks to our friends and neighbours for helping me with the girls.
Thursday, August 30, 2007
One year is a bit young to get the whole presents thing, so I did not expect much. Dirt on the floor is new and exciting to a one year old, so a present is not much different.
For those of you do not know, putting a sparkler on a cake for a one year old is not a good idea.
After that, things went a bit downhill. I opened the presents, but Katherine was still a bit upset. Only the cake calmed her down, as she proceeded to shove fistfuls, as much as she could hold in her hand.
Katherine gets upset at times, but it usually doesn't last very long. That night she spent 45 minutes to an hour screaming as we were trying to put her to sleep, and not normal screaming, but the extremely loud, "I am really upset", screaming. Nothing we did could calm her down. We eventually just had to put her down and let it run its course. That is the first time she has ever done anything like that.
First Birthday: Twins receive some books, stuffed animals, and a toy drum. Parents receive a screaming fit the likes of which they have never experienced before.
I guess we will call that even.
Sunday, August 12, 2007
Yesterday and today went very well. I think I have a hang of this Mr Mom stuff. In fact, I got the kitchen clean for the first time in a year.
It is easy to keep things in proper order when you are by yourself. When the Wife is here, she usually makes dinner. Unfortunately, she thinks that making dinner means that just about every pot, pan dish or utensil must be used. And she leaves them all piled up in the sink for me to deal with. I prefer to clean as I go, to keep my workspace in good order and minimize the mountain of dishes at the end.
I have a good feeling that I can handle when she gets back to work. I like to be organized, and the house is still disorganized from when we moved two years ago. I have been deferring to her when it comes to the house, but it's time for me to embrace the housewife job fully.
There's a new sheriff in town.
Saturday, August 11, 2007
Thursday was horrible, as Katherine was in a mood and would not stop going to her sister to play with her. We are trying not to discourage her from interacting with Jocelyn, but it is hard when playing consist of steamrolling over her or lying on her face.
Other than that, I have not left the house since the Wife left. The weather has been poor, constant rain or very cloudy, so I have not been able to put Katherine in her pool. Today looks better, with more sun. We are all going out no matter what. I don't care if it is to buy toilet paper, but I am getting out of this house before I go squirrelly.
Wednesday, August 08, 2007
Well, the wife finally left me.
No, you don’t get to collect on the pool. She left for a 5 day trip with a group she belongs to, so I am here, alone with the babies. I consider this a test for when she goes back to work at the end of the month. I just got back from two weeks away and she survived, so how hard could it be?
She left me with only one rule to follow. Well, actually, she left me with about a million small rules. Everything from who wears what, when who gets to eat what, to what shampoo to use between the hours to 3 and 5 am on days ending in Y. (I exaggerate on the last one, but only just.) Anyway, being a man, I mostly tuned it all out. Being a military man, I prefer my instructions simple and to the point. So I distilled the millions of little pieces of advice into one overall point, or, as we like to call it, mission:
Keep the babies alive until I return.
Piece of cake.
Wednesday, June 27, 2007
Part of the reason I married the Wife is she lacks some of the stereotypical female traits that I find annoying.
Some women need a man. The Wife does not. She is very independent. We met in our 30's and I know she married me, not because she had to, but because she wanted to. Even the ticking of the biological clock is not a factor in her case, as I was the one who wanted to have kids, while she was a bit ambivalent about it.
However, there are some stereotypical biological imperatives that even she cannot overcome.
The wife has her thing once a week. In addition, one of us often goes out to shop or run errands while the other stays home with the kids. We used to try taking them both, but having twins is a license for anyone to come up to you and say "Twins! How cute. My friend/sister/relative has twins." I estimate anything we do with the girls takes at least 10% longer from people coming up to talk to you.
Although the Wife may not have had a strong biological drive to have kids, some of those drives kicked in after. Most strongly was guilt.
Once a week, when she goes out for the evening, she comes back feeling guilty that she has "abandoned" them, despite the fact that I also go out one evening a week. We both have personal things to do, and I often tell her to take some extra time for herself when she is picking up groceries to get her hair done, whatever she wants. She always comes back feeling guilty for leaving the kids for so long, despite the fact that it was my idea and it was only 2 hours. Believe me, I do not feel any guilt when I am away for a few hours and browsing through Best Buy.
I am not proud of it, but sometimes I will use this to my advantage and overstate how things were while she was gone. “This one wouldn’t stop crying, the other one wouldn’t settle down, I have a headache” etc. This is usually good for at least a clean up of the kitchen.
I expect this will become a high payoff strategy when the Wife goes back to work and I have them all day.
Thursday, June 21, 2007
No offense to good social workers out there, but our experience has not been very positive.
About a day and a half after Jocelyn was born, she started to have seizures and had to go on medication. This was the first sign that something more was wrong than could be explained away by birth stress. The doc was very honest with us about it, and the Wife broke down and started to cry. There was a social worker hovering in the background who just about pounced on her with "How do you feel? Do you want to talk about it?" I have just found out that the chance of my daughter surviving has gone down significantly, how do you think I feel about it? And why would I want to share that with I person I have not even met before?
Needless to say, with the exception of one, throughout this whole process I have not met a good social worker. They seem to hover around waiting for you to have an emotional breakdown so they can swoop in and save the day. And they expect that I can't wait to share my innermost feelings with a total stranger whom I will never see again. Or they are spies looking to see if you can't deal with your baby so the heavy hand of the state can snatch it away. Perhaps I am a bit paranoid, but it isn't paranoia if they are out to get you.
The one we did like was very unassuming, gave us her card and said to call if we needed anything. We are not going to call, but I appreciated her low key approach.
I see the Social Worker like the Grim Reaper. You know it's bad if the social worker shows up. It's a cue that the news is going to be bad and you will be upset. In fact, if they do show up, you probably should get upset, otherwise they might think you are some non-feeling monster and start looking into you more closely.
In these cases, it is the job of the Wife to be emotional while I play the strong, supportive husband.
Wednesday, June 20, 2007
There are two ways to do this procedure. One is surgically, where they actually cut you open and muck about. The second and less intrusive way is to go in with a scope, inflate the stomach with air and find a place between the stomach and skin where there are no big organs or blood vessels and push a needle through to make a hole for the tube.
The scope procedure did not work, as the doc could not find a location where he was 100% certain that he would not pierce something vital. It's better to be safe than sorry. Unfortunately, this means we spent a day in the hospital and put our daughter through an IV and being knocked out for nothing. We have a consult with the surgeon on Friday.
At least we did not have to see a Social Worker.
Saturday, June 16, 2007
Monday, February 19, 2007
Let's be honest. The title of this blog is no longer fitting. The little fights or "differences in perspective" between myself and the Wife, seems less important now that we have children.
Don't get me wrong. Not much has changed. I still complain about the stupidity of the lefties, the Wife still ignores me. Some things will never change.
However, Having twins, one of then needing special care, that stuff takes a back seat. There is a saying about how most young people are to the left of the political divide, but as they grow up they move to the right. I think it has less to do with age, and more to do with responsibility. A lefty in my situation is too busy worrying about his own problems to try to come up with wacky solutions to the problems of others.
The focus of this blog is changing. It was always about my life and what was going on between me and the wife/girlfriend. As we become more focussed on our children, so does this online diary.
Blogging has been light of late. It’s not that I haven’t had the time. Since we are both at home, we have nothing but time. The simple reason is that I have not felt like it. Things are stabilizing a bit, and I have more to complain about, so things might pick up.
My focus will be more on what it is like raising a disabled twin, as that is what my life is now about. I hope this blog will be more positive than negative, and that our experiences may help other in similar situations.
To all those who have left their thoughts and prayers, thank you. They have helped to sustain us through this difficult time.
Friday, January 12, 2007
Our daughter's condition hangs over us like a cloud. Life now seems like a darkness punctuated by the occasional time I can forget that this has happened. The one bright spot that always makes me happy is our other daughter, Katherine. I have long wanted to be a parent, but not until I became one did I truly understand the love one can have for a child. I would do anything to protect them. That is what makes Jocelyn so hard, as there is little we can do.
Her life expectancy is based primarily on three factors: Whether or not she has seizures, how mobile she is, and how able she is to feed herself. Seizures usually turn up in the 4 to 6 months. No sign of them yet and they passed the 4 month mark 2 weeks ago. There are things we can do to improve her mobility, such as working with a physical therapists and we can continue to try to feed her as much as possible.
Her life expectancy is 15-20 years, depending on the three factors. Her chance of seizures are about 80%. It is likely she will, at best, be confined to a wheelchair and we have had little success bottle feeding her.
We intend to keep trying, but the chances of improvement are slim.