Sunday, November 27, 2011

The Twins - Thoughts From When They Were One Year Old

This was originally written in December of  2007. I could not post it at the time, but I think I am able to now.
Robert Latimer is back in the news. He is up for day parole. I was not aware he was still in prison. He has served 15 years of his life sentence.

I lack detailed knowledge about his daughter's medical situation, but there are some parallels to J's, at least in the effects.

Although barely one year old, our doctors have been mentioning about her hip. Her lack of control over her muscles cause them to contract involuntarily and are causing a hip to pull out of alignment. It may require surgery or a brace, or something.

When we go out, I am constantly asked about the girls. J is obviously smaller and seems like a newborn while K is obviously at least a year old. People wonder how they can be so close together in age. When I tell them they are twins, you can see they are even more confused. However, I don't normally offer an explanation unless asked.

J's head is about half the size of her sister and has not really grown since she was born. I have seen the MRI scan of her brain. White spots indicate tissue and black indicate no tissue/fluid. The black spots were larger than the white. Seeing those pictures immediately dashed any hopes I might have had for her to have anything close to a normal life. She has somewhere between 25-30% the higher brain mass of a normal child. How can therapy work with something that is not there? I don't expect she will progress beyond the mental age of a 1-3 month old baby. K is growing up fast. Yesterday she walked unassisted for the first time. Yet every milestone that K passes reminds me of the one that J will never meet.

Right now is a bit of a false spring. We have an appointment in a few weeks and they will be looking at her hip and the curve in her spine. I can now pretend that I have two daughters, one that is over a year old and another who is just born. However, we will soon have to face J's dislocating hip and severely curved spine. I expect that life will increasingly become more painful for her, require more invasive procedures, and require more hard decisions from her parents.

I can see ourselves in a future situation similar to the one that the Latimer family faced fifteen years ago.

It is true what they say about judging a man before you walk in his shoes. Although we have no idea how long J will survive, I cannot fathom life without her. As I write this, she sleeps quietly in the living room, finally having worn herself out during tummy time. I can think of nothing more beautiful than her sleeping face.

You really do not understand love until you experience the love you have for your own children.

Thursday, November 24, 2011

Does K have Asperger's?

I recently learned a bit about Aspergers Syndrome partially through this humorous video filmed as a promo spot for a fictitious new TV show on the CW called "Asperger's High". 

My new interest was caused by reading this post about what it is like to have sex with someone who has Asperger's. She has had several startups and writes about her life on her blog (and she has Asperger's).

One of the aspects of Asperger's is abnormalities of social interaction. If you watch the video linked about Asperger's High, you will see exactly what life with K is like. Sometimes I feel like I am living in Asperger's High and I am the only non Asperger's person. K will come up to me all the time and tell me something completely unrelated to anything that is going on. And then she will start streaming her thoughts, as if she has to say everything she is thinking. It's like a fire hose of consciousness. Sometimes, when I am tired, I find it difficult to take.

Even though K perfectly displays this aspect of Asperger's she shows none of the other aspects.

I think she is just being five.

Saturday, November 19, 2011

Big Announcement at the MLWGF House

The Wife is Pregnant.

We are just over 4 months into it. The baby is due in April 2012.

We have the next ultrasound at the end of the month. So far they have found only one, but last time at this time they thought it was one. No reason to expect more than one, but the Wife has been joking about it. 

I can't imagine what I would do if it was twins again.

Wednesday, November 16, 2011

Big Announcement Coming

I have not been posting to this blog much in the last few weeks. I have been writing on my other blog. I am going to start paying more attention to this blog and you will see a lot more posts in the next little bit.

But first, I am going to make a big announcement on Saturday, 19 November. It's not a cure for cancer or some big invention that will change the world. It is of a personal nature.

Feel free to guess in the coments.

Friday, November 04, 2011

Wisdom of a Four Year Old - Remembering Names

Me: "What are the names of the twin boys in your class?"

K: "I dunno. Red and Blue I guess."

Wednesday, November 02, 2011

Random Hospital Thoughts

I think, in my next life, I am going to get a job at a hospital. There are a lot of hot women that work in the medical profession. Having a good paying job doesn't hurt either.