Asa Jay's weblog

Our son Sam has had an interesting fascination with the Titanic lately.  We’ve let him watch the 1997 movie “Titanic” and the early 1958 “A Night to Remember.”  We’ve checked out additional documentary DVDs from the library along with books.  He’s taken one of his giant Lego planes and converted it to be Titanic, complete with funnels and a break-away hull which allows him to sink it (from the couch to the floor) in dramatic near-real play action into two pieces.  It’s pretty cool actually.  I even helped him find the underwater 3D representation on the sea floor in Google Earth.

All this has re-kindled my own childhood interest in the story and the wreck.  I recall being intrigued by the idea of this unsinkable ship having sunk in 1912 and the fact it hadn’t been found.  I, like many others thought how cool it would be if someone did find it and was able to raise it.  I read Clive Cussler’s book “Raise the Titanic” and watched the movie of the same name.  These of course only kindled a belief the Titanic might one day be found and actually brought back to the surface.  Many people thought the same thing.  But tonight I got to thinking what a folly that was.

I’m sure before the Titanic was discovered by Bob Ballard, many people truly believed we’d find her and be able to affect a patch on her hull that would allow us to bring her up.  I’m certain there were grand visions of turning her into a museum, monument or sailing her again just to take the “unsinkable” meme and shake it in the face of God.

But God had other plans.

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Please let me be perfectly clear about this, I am -not- anti-vaccine.

My son has Autism and I know there is a large body of individuals who believe vaccines are a primary cause of Autism. I also know my son’s behaviors appeared to change after a huge battery of vaccines were administered. Does that mean vaccines are causing Autism?

I recently read an article in which Bill Gates indicates those who are buying in to the anti-vaccine theory are putting their kids at great risk. I happen to agree. But if vaccines aren’t causing Autism, why is there so much anecdotal evidence indicating there is? I would like to explore my own observations and questions that make some people think I’m anti-vaccine (but I’m not).

I am not a doctor, or a chemist, or even a behavioral specialist. I’m an engineering and troubleshooting type; analyzing and collating data to come to logical conclusions. I’ve been using the Kepner-Tregoe method of problem solving since High School, though I didn’t know it at the time. I don’t wish to spend days researching answers to these questions; they are meant to be taken at face value for the reader to ponder and react accordingly.
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Sometimes it seems like God doesn’t answer our prayers the way we want him to. That simple statement seems true but we should analyze things deeper before we allow such an idea to permeate our thinking. Sometimes we don’t get what we prayed for but what we do get is an answer to prayer.

Those who have been following this blog know about our son Sam and his dual struggle with Autism and Hirschsprungs disease. Since September of 2009 we have been praying that we might be able to reverse the Ileostomy he was given so he might lead a more normal life. That year of prayer was recently answered but not necessarily how we had wanted it to be.

After months of waiting, we were finally contacted by the Children’s Hospital in Milwaukee Wisconsin. They were now ready to bring Sam in for motility studies; to determine the condition of his colon and see how it was functioning. Shelley and I were elated to finally be on the list so we could find out Sam’s progress. We had been praying for nearly a year for his colon to recover and become fully functional so we could hook him back up. We began our planning and looked forward to Sam being tested.

Unfortunately I had already been scheduled for a company trip during that time, however it didn’t really matter as we had made the decision early on that only one of us would accompany Sam on this trip. Off I went to Austin Texas while Sam and Shelley flew to Milwaukee Wisconsin. As parents we were both anxious to learn the outcome of the testing to know if we might be heading down a new chapter by getting Sam hooked back up.

At this point, it is crucial to understand how Sam’s quality of life has improved immensely. Since his operation last September he has been healthier, more energetic, less disruptive, doing better in school and in general exhibiting -less- autistic behaviors. A quick generalization of the situation would indicate having the Ileostomy was the best thing we’d ever done for him. And now we were seeing if we could reverse it.

Sam's 7th Birthday

Yea, I don’t post much here huh. Seems like most folks are moving to Facebook and exposing way too much of their personal lives. Some folks have managed to get themselves fired from a job or have ruined chances at getting a new job due to, shall we say, intimate details found on social networking sites. Rather than spend time in a long dissertation of the pros and cons of other social networking sites, I’ll just say I’m content with controlling all my own content, for the most part on my own domains. Occasionally something in life changes and it creates emotions, physical difficulties or other problems or concerns in life that at some point friends, neighbors and even strangers should be made aware of. That kind of change came to my family recently.

For those who have followed this blog and not died of starvation, will recall my son Samuel was born with a condition called Hirschsprungs disease. To recap, he had two surgeries to correct a problem in his colon. Well, a new problem possibly related (or not) to this disease came up recently. Sam had been admitted to Hospital twice in the past few years for a distended abdomen. Basically his guts blew up like a balloon and he couldn’t get the gas out. Not being constipation we were confused as were the doctors. This last few weeks however have changed all that and resulted in another surgery.

Sam was again admitted recently, twice in two weeks. His original surgeon as well as a new Pediatric GI specialist both agreed, his colon was not working as expected. It had to come out. This was real shock to Mom, but I have to admit, I was nearly expecting it. With that kind of heartbreak sitting in our minds, the surgeon called during the surgery with what turned out to be good news.

The surgeon found that under sedation, Sam’s anus was relaxed enough to properly release the built up gas and soft stool that was blowing him up. This meant there might be a chance to save his colon but it was going to be a long haul. First, they would install an Ileostomy, bringing his small intestine outside his abdomen and he would now be pooping in a bag. Next, after some months of recovery, we will have to perform dilitation on his anus. Sounds lovely doesn’t it. This means we’ll have to insert increasing size rods in his anus to help the muscle expand -and- get him used to object passing through.

Next we’ll continue anal conditioning by putting him through some biofeedback session to help him understand how his back door works. Eventually, we hope to hook him back up so he functions normally, with stool coming out the anus rather than out his belly. Until then, we have a huge paradigm change.

Dealing with an Ileostomy is not easy. We now have to empty this bag hanging on his abdomen several times a day. The bag must be changed every one to four days. This means we have to buy these necessary bags, classified as medical appliances, and other supplies to support our son pooping in a different way.

It was initially a shocking and gut-wrenching experience. I’ve always tried to be a neat and clean person, so having to deal with someone else’s poop in addition to changing a bag on something that is outside the body that normally is found on the inside, was enough to freak me out for a day. Three days later we are beginning to deal with it better, but it’s still our little boy and it hurts to see him this way.

Prayers and good thoughts are appreciated. This condition is made all the more difficult because of his Autism, though Sam does seem to be coming to grips with the fact he has a bag for pooping now. We just pray the future is better, that we can successfully get his anus trained to pass poop, get his colon hooked back up, make sure it all works and he can lead a normal life. Until then, both Mom and I have a lot of work to do.

Thanks for listening,
Asa Jay

Sam has been home now for a week. His little bum is still a bit sore and he’s been fighting a persistent rash.  Shelley has been trying to take care of it and it’s starting to heal.  He’s eating well, but seems to have picked up a slight cold.

Last night he was very tired after having not slept very much the last couple of days.  I think he’s doing much better today after a good night of sleep.  So far, his surgery is causing him no problems, outside of the rash.  In the next day or so, we’ll be able to remove the dressing on his belly where the surgeons had to go into his abdomen.  I’m sure this will make him feel a little better. . . once the pain of removing it wears off.  🙂

We’ve received many cards and flowers from a whole lot of people.  We wish to thank all of them and have been doing so individually.  We are thankful for the blessings of having Sam with us, and for the blessings of all our friends who have prayed and kept in touch with us.

Thanks,
Asa Jay