After 4 weeks of absolute perfection with Landon's health, the botox wore off. Before there was even a noticeable change in his bowel function he already had a low grade case of enterocolitis. They had hoped that we would get at least 3 months out of the last round, but Dr. Levitt said they could go in for another round after 2 months. So basically for the past month Landon has lived off of Flagyl, frequent irrigations, and Pediasure since his appetite is nonexistent when things aren't moving along very well.
Today we were finally able to repeat the botox injections. Landon did great and we were in and out of the hospital in under 3 hours. Dr. Levitt recommended that we start putting him on a potty chair to encourage him to push more on his own, but other than that didn't have any suggestions other than repeating the botox treatments and treating enterocolitis as needed. I asked about the possibility of doing a myectomy- a surgery to permanently remove some muscle in the sphincter to create the same effect as the botox permanently. He said that he doesn't like doing those surgeries due to the risk of incontinence later on. For now I'm fine with trying a few more rounds of botox to buy us some time, but if things don't improve and Landon continues to experience recurring bouts of enterocolitis we will definitely weigh the pros and cons and reconsider.
Now we wait and hope for similar results from this round of botox as we experienced with the last. Other than our continued Hirschsprung's related struggles, things are going really well with Landon. Big news- he is officially walking! He took off walking 2 weeks ago and has made great progress becoming more stable ever since. He is also saying and repeating more words every day. This weekend we came up to Cincinnati early to visit the zoo and children's museum with the boys, and during that time Landon was around a lot of children his age. I noticed two wonderful things- compared to his peers, Landon is 1) big! and 2) equal. He talks, walks, and climbs as well as other children his age that we saw. No one would ever guess there is anything out of the ordinary going on with him other than the slight clue that I'm holding him down pretty much force-feeding bottles of Pediasure just to get calories and hydration in him.
I'll update with results of the botox soon. I hope everyone is enjoying the start of fall. The weather is absolutely beautiful here right now!
