Taking a step back

"Optimist: Someone who figures that taking a step backward after taking a step forward is not a disaster, it's a cha-cha.” -Robert Brault

Thank you to everyone that has been asking about Landon. Unfortunately, the reason I haven't been updating on him online the last few days wasn't because things got better, it was because we were plotting our next move.

The random vomiting spells are only getting worse. It has happened every day since Tuesday- 4 consecutive days now. Landon's GI system is so out of whack there's no point in even trying the botox. We are over a year post pull-thru and it seems that things are getting worse instead of better. Some may remember this past summer when we were entertaining the thought of going back to an ostomy. I felt pretty strongly about doing it to get him off the Flagyl (which he has had to take over a year total now) and to improve the quality of life for Landon and the rest of the family. Landon should not have to deal with 3+ hours of irrigations a day, and it takes away time from our other kids. He shouldn't have to deal with projectile vomitting all the time, the belly aches, not ever wanting to eat and pretty much being force fed. But despite all that, having an ostomy stinks for him because it makes him "different." So we tried the Botox, and it helped. Just not enough. Landon spent his first Christmas eve and first birthday in the hospital.. but he is not spending his 2nd or his 3rd. After the way the last 3 months have played out, I have complete confidence now that going back to an ostomy is the right thing to do.

So the 30th we will head back up to Cincinnati, but instead of doing the botox, Dr. Levitt will be giving Landon an ileostomy. We will then have to stay in the hospital for a week and possibly a few additional days. This time we know what to expect post-op. We already know how to do bag changes, and even though they are no fun for us, Landon had a much better quality of life with an ostomy. I'm looking around for the coolest pediatric ostomy belts that I can find to conceal it. I learned from our last go round that many, if not most people are very freaked out by the appearance of it. After all, it is live human intestine hanging out of the abdomen, and even I had a hard time looking at it and touching it at first. But Landon is completely aware of what goes on around him now and I don't want him to experience any dirty looks or unnecessary rude questions. He will just have some sort of cool belly band he wears around his waist barely peaking out of his pants.

Since it is another temporary ostomy we know that he will have to undergo at least one additional surgery eventually. I want to emphasize the word eventually. We are leaving things alone for at least a few years. There is a good chance he will go to kindergarten with an ostomy. Personally, I'm tired of making decisions that affect his quality of life. I can't even explain how bad I feel when I think that we could have done something differently thatmay have stopped him from going through even a little bit of the adversity that he has faced. I hope that we can leave things in place until he is old enough to want to reverse the ostomy, and to understand the risks and challenges that will come along with it. Who knows, maybe within the next few years modern medicine will catch up to these complex HD kids. There is some promising research going on in Boston right now where they have found that injecting cells from the intestines of healthy mice into the intestines of mice with HD caused the aganglionic segment of the intestines of the HD mice to gain ganglion cells and function. That's terrific news, especially for the children affected with total intestinal aganglionosis. In Landon's case, that particular study may not have much use since his affected segment has already been removed and he continues to have poor function of his colon for unknown reasons.. but hey- at least they're getring somewhere!

I hope everyone has a Merry Christmas! I will update soon on how the surgery and recovery goes. As always, please keep Landon in your prayers.