If you made it over here, then I see that you found that I moved Landon's Caring Bridge. Since we only have the internet on my phone, this makes it easier for me to update more often since Blogspot offers a mobile template. Also, I like the comment feature on the posts in case there is anything anyone would like to share.
Landon is doing okay lately, not really good or bad either one. He is still eating better, and probably gaining weight and so that part is good. We have introduced two different solids so far. Even though we will only be using foods selected from Cincinnati's 'Laxative Diet' list, I was still paranoid about food causing constipation. For that reason, we started with prunes. They may have had a little bit too much of a laxative effect, as they ran through him in less than 2 hours. I know that is good that he was able to pass them on his own, but I'm unsure if he was able to gain any nutrition or calories in that short of a transit period. Next was green beans, and last night was the first time that he tried them. He had an inconsolable period of crying from 9-10 last night, but that is something that happens from time to time anyway and so it is too soon to tell if it was from the food. I just fed him green beans again about 30 minutes ago and so by tonight I will have an answer.
Earlier this afternoon I met with the service coordinator from Early Intervention. We were assigned therapists for developmental, occupational, and physical therapy that will be contacting me to come seperately to evaluate Landon. If he exhibits a 30% or more delay in two areas then he will be eligible to receive therapy in our home for only $30 a month. If he doesn't qualify, then I will use his prescription for OT and PT and get him therapy privately, but that means more time off work to get him there and it will probably be much more expensive.
On Thursday night we are leaving to go back up to Cincinnati for another follow-up. They are doing a repeat abdominal x-ray and discussing what has happened since our last visit. We will be discontinuing the antibiotic that Landon has been taking for the last month, but I'm not sure if we will be stopping right away or doing it gradually. I also want to discuss why Landon is having so many issues with the affected portion of his intestines removed. It is normal to have some issues post-op, but not this many and to this extent. When he still had his ostomy he also struggled with enterocolitis, which is very rare. So I feel like there is something more going on. I have been doing a lot of research on chronic/recurrent enterocolitis and the outcomes. I found an old post from several years back from a parent that said that her daughter struggled with issues like that for 5 years before they discovered she had damaged connections from her small to large intestines. That got me thinking about an incidental finding in Landon's upper and lower GI studies done in July. We discovered that he had a mobile cecum. It isn't exactly rare, approximately 15% of us have a mobile cecum and have no idea. It isn't known to cause problems in the general population, but who knows if it causes problems when it exists along with Hirschsprung's. If anyone knows, it would be Dr. Levitt and so I plan on bringing it up. I'll try to update this weekend on what we find out in Cincinnati.
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