Jul 11, 2007

A day in the life of Skyler Part 1

Frequently, I am asked different things about Skyler from family, friends, even folks in the store who are curious. Lot's of questions about what happened to him, how does he do this or that, or how do you take care of him. So it occurred to me that I might start keeping track of what is involved in a typical week with Skyler. That way I can let people know answers to questions, and keep a bit of information about him and his care. There are so many things I do that I just take for granted because it is how life has always been with him. I don't even think about it or remember it anymore.

I believe I should probably start at the beginning, a very good place to start. (Was I just channeling Maria Von Trapp?) Just so you know how we came to have Skyler.
So let’s call this part 1...

We had tried for quite a long time to have a baby, and then found out that Kathy had what is called "hostile mucus". Her fluids killed sperm. So before my boys could make the trip up the tubes, they had to make the trip through the killer river of hell!

None survived, and very few stopped to ask directions...

The answer was to go with artificial insemination, or as we referred to it, the "Turkey Baster" treatment. We would go to the OB/GYN office, where Kathy would get prepped for the receiving end of the deal, and I would go a special room for dads that was reserved for "harvesting samples" as they liked to call it. Of course, in this office, that is a room at the end of the waiting room! So after whacking off into a cup, I got to make the stroll through the rest of the moms waiting and go back to where Kathy was, cup in hand.

After several visits doing this, I can no longer be embarrassed about anything, seriously, just try me...

Skyler was Kathy's third pregnancy, the first resulted in a blown out Fallopian tube. The second turned into a rare form of Cancer, sometimes referred to as a Molar pregnancy. That is where the DNA goes haywire and you start growing a tumor instead of a fetus. We were actually quite lucky she had the tubule pregnancy first, because now they were watching her very close for another one. So they spotted the cancer very early. Kathy had to get operated on to take out the tumor and go through 3 rounds of Chemo before she was OK. It is a fast acting Cancer that few people survive, and there are some medical journals written up about Kathy's case.

The last pregnancy, and ironically enough the last time we were going to attempt the artificial insemination, we got lucky and she was pregnant with Skyler.

So what happened?

Kathy's pregnancy was really uneventful, she had a bit of morning sickness, but nothing bad. Everything was great right up to the point where her water broke at 24 weeks. She had even had a checkup the day before. Kathy wound up in the hospital that day, and stayed trying to hang on to Skyler. In 1991, the chances of a 24-weeker making it were about 20%. Not very good. So lots of drugs to stop contractions were given, and Skyler hung inside until the 26 week mark where Kathy got an infection. So he had to come out. Kathy had a C-section because it was doubtful Skyler would survive a vaginal birth. He was born weighing 1 pound 15 ounces. He looked a lot like a skinny little chicken, actually! He was rushed up to the NICU (Neonatal Intensive Care Unit) that was his home for the next 3 months.





There were lots of ups and downs, Kathy's infection was in him so that caused problems. He was on a respirator to breath because the lungs are the last thing to develop and his were not ready to support him yet. He had no suck reflex so they fed him through a tube down his throat, after Kathy would pump her breasts for milk. IV's that were in skinny little arms and legs would blow out because the veins were not big enough. He developed Thrush, which is an infection in the mouth and throat. Honestly, I can't recall all of the events of those 3 months in the hospital, because we were operating on little sleep, and I really think I probably have blocked a lot of it.

But, after 3 long months and a lot of battles, we brought him home. Still no diagnosis yet because it was really too early to miss any milestones at this point. But we knew down deep that things were not normal. Skyler couldn't tolerate any stimulus. Everything made him cry. Doctors, family, friends all had ideas, ranging from Colic to Allergic to our dogs, to just being a preemie. Gradually he became more used to life, but was always more temperamental than most kids. Along the way we also missed a lot of milestones. So eventually we found out there was brain damage located in the motor control area of Skylers brain. There was also some damage to the processing center, and we now had a diagnosis of Cerebral Palsy and Sensory Integration Disorder.

Some where along the way either in Kathy or just after birth there was a hemorrhage that caused some damage. Nothing you can do about it, but the brain is an amazing thing and as he grows, he might reroute some of those broken pathways.

Skyler never did get much better though, although he became somewhat better at handling stimulus, his body just won't do what his brain tells it to do. The sensory integration issues are still there and we have to be constantly aware of our surroundings. Loud noises or visuals can cause him to fall apart, or worse, have a seizure.

So for those folks who need a proper label, it is Spastic Quadriplegia Cerebral Palsy.

The end result is that Skyler is in a body that just doesn't work the right way, he can't control the arms and legs, can't talk, has trouble focusing his eyes, pretty much anything that involves muscle control is all buggered up.


Fast forward to today... Because the reason I started writing this was to talk about a typical day in his life.
So tune in tomorrow for part 2...

15 comments:

  1. I am smiling and crying at the same time.

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  2. WOW! just wow!

    you and the wife are troopers for even the process of trying to get pregnant.

    but I guess in the end you cherish the bundle of joy you've got because it was so hard to get there.

    can't wait for the other parts.

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  3. Why you put up with me bitching about my life I'll never know.

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  4. Wow, Skyler's had a rough road, for sure. You all have.

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  5. Cheer: Thanks, but don't cry, it's all OK.

    Teri: We did kinda push the medical technology a bit far...

    Kirby: Hey, we all have shit we put up with, bitch all you want. Like Frasier, I'm listening...

    Dick: Thanks man.

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  6. Spooney4:00 PM

    teri said exactly waht I was gonna say "WOW! just wow!"

    That's a lot to go through, I can see why you blocked some of it out.

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  7. Hey Spooney, thanks a lot. By the way, is the place still standing now that you are on your own? ;^)

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  8. Great kid from a great pair of folks.

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  9. This will be a good series - can't wait to read your entries.

    Skyler weighed as much as my kitten when I brought her home. That's itty bitty, I'm amazed he survived.

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  10. SD, I wish that every kid had a parents as good as Skyler's do. My job would be a lot easier and our world would be a lot better.

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  11. Anonymous3:04 AM

    Keep going. Great post.

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  12. I'm looking forward to this series, S.D.

    I can imagine how those three months are sort of a blur.

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  13. wow, we still use the word "spastic"?? huh.

    This is neat. Painful, perhaps, to the outsiders, but neat. It's always interesting to hear stories from other Special Parents and to see what a Day in the Life is like, if for nothing else than comparison. Also, I don't know hardly nuthin' about this condition.

    Oh, and am I a bad person for wondering if I can use this for potential God Talk fodder?? Probably...

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  14. Grant: That is kind of you to say, thanks!

    GKL: Yeah, he was really small. Pretty incredible.

    JY: You have the toughest job in the world, and are not compensated at all for what you do.

    Thanks Anon

    Chris: I hope to do more posts about Skyler, that's what I originally came here for.

    BO: Spastic is OK in the context of muscle control, just not when hurled as an insult! And you may steal away my friend, have at it!

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  15. i'm inspired!

    i have wanted to volunteer at phoenix children's hospital in the nicu for a couple of years. the ex talked me out of it because he feared i wouldn't be able to separate myself. and maybe i can't, maybe i shouldn't. we all bitch about our lives that are "so bad" ... bullshit. none of us have anything compared to the sacrifices you and your wife have made and the emotional roller coaster it probably seems you are on at times. so, i will be volunteering at PCH because i would rather shed tears for those small little ones than the stupid meaningless stuff that happens in my life.

    Kudos to your family, thanks for the inspiration and the slap in the face that my life really isn't that bad.

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