Since we have been back from Cincinnati we have had the longest stretch of uneventful time so far, and it is great! Landon is down to just 2 doses of Flagyl a day (down from 4!) and he is staying healthy. This Thursday we are removing another dose and we will be down to just one a day. We are doing irrigations twice a day, and increase the frequency up to 4 times a day if he seems to be getting sick. One day mid last week Landon vomitted once right before we left the house in the morning, and so my mom and stepdad brought him to me at work during my lunch and I did an extra irrigation in the front seat of their truck! It cleared everything right up and Landon has continued to tolerate the decrease in antibiotics well. Just a side note for those who aren't from the Hirschsprung's support groups who aren't familiar with what irrigations are, it's the process of inserting a catheter through the rectum (or ostomy if the patient has a colostomy-like Landon or an illeostomy) and then feeding it up through the intestines. You then attach a syringe and slowly insert sodium chloride solution and let it drain out, taking all of the stool and bacteria out with it. Trust me, it is not a fun thing to do to your child. And I'm sure it's not especially pleasant for Landon, either.
Besides the Hirschsprung's-related issues, Landon is doing very well. He is still gaining 3-4 times the amount of weight that is expected for a typical baby his age, which is absolutely amazing for a child with a disease that is often closely related with poor weight gain/growth. He is smiling more each day, and has started making laughing faces without making any sound. He has also gained enough head control to sit in his Bumbo seat and watch his brothers play. So far at 2.5 months he is on track developmentally and I will continue to stay cautiously optimistic regarding his future development.
Pretty much everything is going well for our family. The colostomy care was difficult at first, but has gotten easier. Same with the irrigations. It is tough getting up at 5:15 in the morning just to complete all of Landon's care before I go to work, but I'm hoping that gets easier as he continues to sleep for longer stretches of time. It will also be difficult any time that he gets sick and requires extra irrigations. I work 25 minutes away from our home town and I work 8:15 to 3:30 with a 30 minute lunch- not enough time to run home in the middle of the day. I wouldn't ask my mom and stepdad to bring Landon to me during my lunch on a regular basis in their gas guzzling truck, that would be too much. All I can really think to do is take little chunks of sick time to tack on to my lunch and run home, but my sick time is already running low and I still have to plan to take off for his 2nd surgery sometime in the next few months. Not to mention the nature of my job- I'm a speech pathologist in a school and so every time I'm out my students miss their speech that day. Working is definitely tough right now, but I have to make it work. I love my job, and my older two boys love their daycare. They both have friends in their classes and love the socialization, and they learn so much. I know if I were to stay home with them I wouldn't be able to read to them or teach them like they get at daycare with everything I would have to do for Landon. Every day would be crazy rather than structured, which is what they need. Not to mention, as I said before, I love my job. I work a teacher schedule and so I still get plenty of time with my kids, in addition to working in a profession that is very rewarding to me. I would really like to fast-forward to next summer when I'm off for 3 months. By then Landon will be 1 and things will hopefully calm down even more.
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