Maeghan
Maeghan was tiny. She always has been. There were no obvious problems that you could see, other than she was tiny. She moved, she turned her head, she would recognize you when you were there. Just a normal baby. We didn't see anything wrong. Still don't. She is just a happy little kid and always has been.
The doctors, on the other hand, kept telling us it wouldn't last. She had too much wrong with her that something was going to happen and everything would change. It never has.
I hate the medical profession. I know, it's not their fault, they are doing their best, but this is just a long line of inconsistencies and lies and general incompetence I keep running into. But I am old and forgetful and really shouldn't have an opinion that counts. We live with it because it is all we can do. I generally find nurses very acceptable. They are helpful, concerned and they listen. They always are trying to do what you need to make you feel better. I have only found one, maybe two, doctors that really seemed to know what they were doing and were not just 'following the book' when you tell them what is wrong or what you think might be wrong. Not really helpful, but I have gone into this rant in the past so I shouldn't do it again. It is not the lack of brilliance I see, it is the non-caring attitude. What I keep running into is a lack of sympathy. They just seem to have people on a conveyer belt and just try to get them in and out as soon as possible. But, there I go again.
Maeghan was doing so well. The doctors wanted her to be some kind of case study for something. At one point, we were told they only knew of 8 cases that were similar to hers in the entire world. I never really checked on that, but I know they contacted someone in Germany to discuss her case with that doctor. He had a little boy with kind of the same thing, but I think he was eight years old at the time. Actually, I don't really remember, but I think that is what they said. Nothing ever came of the case study as far as I know, but maybe she is written up in some journal somewhere discussing her condition.
Maeghan had to have a couple of surgeries when she was little. Maybe three, but I don't remember. I know she had to go for a lot of MRI scans. I didn't have an MRI until just about a year ago and I can tell you, I hated it. Not really the scan part but having to lay in one position for that long with out even breathing funny. It was horrific. I have no idea how Maeghan did it so many times. Later, she has told me it was not good, but I never knew it back then.
I am not really sure which surgeries she had first or when they occurred. I know she was very little when it happened. What I am going to say is going to make me cry again, and I know a lot of parents have gone through the same thing. I would like to do something to support them and maybe I will after I retire, but it is not a good thing to go through.
Having to hold Maeghan's hand while they put her under anesthesia and not knowing what the results will be is about as terrifying as it gets. Told you I wouldn't make it, Be back to this in a minute.
I know one of the operations was to widen her spinal canal in her lower back. I think it was the first one but I can't be sure. They said they had to do that because it would cut off her nerves and she would be paralysed from the waist down if they did not. Looking back on it after all these years, I just have to say Really? I can't say if it had to be done or if it did not. They are the doctors, but with my experience before and since then, I am beginning to question it.
The problem was, or is, is that they had to fuse her spine on I think three vertebrae. This means she could not grow. She would always be small. because that part of her spine would never get bigger. Maybe it was necessary, but that has really defined her life since then. Not in a bad way, she is still Maeghan and the joy of my life, but it meant she would never be able to do a lot of things we take for granted. To this day, I am not sure we understand all the implications as it is still effecting her. But she is Maeghan. That is what matters to me. She doesn't let it define her life and I am there for her whatever she wants to do. Yea, I make a fuss about it and I get scared when she is trying to do something I think is not advisable, but she is Maeghan, smart and capable of taking care of herself, as much as I would like her to still depend on me, but another story.
I am pretty sure I covered the frog hop when she was little. That is how she got around. Up on her knees and hands and sort of hopped forward. I am thinking about it now and remembering how cute it was. It looked kind of painful but maybe that is just me being old and fat. She got around ok so I guess it worked for her.
I think I have told the stories of me sitting her up on the counter while I cooked. She seemed to enjoy that a lot. I have pictures of it somewhere. She would just sit there and watch. I'd give her something to eat or let her stir something every once and a while. I think she enjoyed it, but it's been so long ago, I don't think even she would remember it.
I am kind of forgetting what I was going to write now. I have some stories from later in life but I think there was something I wanted to get to before that. I'll give it a break for now and see if I remember later. Besides, work, crying, emotional crap, it gets to be a bit hard each time, so this is good for now.
Later
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