Hello everyone, I hope everything is going well for all of you. Things have been wonderful around here lately. Last week I was off work for Spring Break, and even with a few inconviences in our home (upper respiratory infections, pink eye) it went very well. I finally feel like our life is managable again, for the first time since Landon had his pull-thru surgery in December. Nothing has changed to make it easier, we are just finally getting settled into the routine for all the extra care that Landon requires.
So what exactly is the extra care that Landon requires? Well here is a breakdown:
4:45 AM: Alarm goes off. I get up and put a bottle in the bottle warmer, prepare his antibiotics, make sodium chloride solution for the irrigation, prepare the area, get all supplies ready
5:00 AM: John and Landon get up. John holds Landon while I do the rectal irrigation. It takes 30-45 minutes start to finish because we must continue until the solution runs clear.
5:45 AM: I give Landon his antibiotics and feed him his bottle. Sometimes he falls asleep and goes back to bed. Other times he plays in his bouncer for the rest of the morning.
6:15 AM: I get ready for work, very quickly! I shower the night before and let my hair air dry overnight because I don't have time for anything else. My routine for myself is very minimal. I also get Carson and Austin up and help them brush their teeth, get dressed, and take their vitamins.
7:00 AM: We leave the house. I drop Landon off at my mom's house first, and then Carson and Austin go to daycare.
8:00 AM: I get to work. Lately, Landon is in good enough health that I can focus on my job and the kids that I see. Sometimes Landon has to be brought to my work around 11:30 for an extra irrigation if things aren't going well for any reason.
2:00 PM: Landon takes his second dose of antibiotics for the day. My mom does this when I am at work.
3:15 PM: I get off work. I usually have at least one errand to run in Carbondale, the larger town that I work in. Sometimes I pick up produce from the natural foods store near the school where I work, sometimes I have to refill Landon's medicine, or sometimes I pick up milk from one of our wonderful Carbondale-Carterville-Herrin area milk donors. Next I pick up Carson and Austin from daycare.
4:15 PM: I arrive at my mom's house. Either my mom or my stepdad goes out to the car so I don't have to unload the boys. First I review what Landon has eaten for the day and how much. Then whoever stays inside helps me with our second rectal irrigation for the day. I'm spoiled because everything is usually already prepared and set up for me when I get there, saving around 15 minutes.
5:00 PM: I get home with the boys. John is usually gone to the gym for at least another hour, so I unload the boys and get some type of educational television show on for Carson and Austin to keep them out of trouble. Landon sits in his high chair and eats puffs while I prepare dinner.
6:00 PM: I mix Landon's two types of probiotics and his supplements he is taking in apple juice and give it to him. He also eats pureed food around this time.
6-7-ish PM: Somewhere in here Landon takes another bottle.
7:30 PM: Bath time for everyone! Yes, all 3 boys take a bath together in the tub. You would do this too if you saw how much easier it is.
8:00 PM: Carson and Austin get ready for bed and go to sleep. This marks the beginning of preparing to make it through the next day...
8:00-9:00 PM: Thaw donated milk (it is all kept frozen), wash and sterilize bottles, monitor amount of pureed food and prepare more if necessary
9:00 PM: Landon plays in his bouncer outside the bathroom doorway while I take a very quick shower. No time to even think about blow drying my hair, so I prepare it the best I can so that it dries halfway tame.
9:30 PM: Last rectal irrigation for the night. Once again, John holds Landon while I do the dirty work. Then John cleans up while I take Landon out to finish our day.
9:45-10:00 PM: Landon takes his HUGE bedtime bottle. Seriously, during the day he is unable to take more than 4 ounces at a time. But he eats 7-10 ounces for this last bottle of the day. Strange, I know.
10:15-11:00 PM: I hold Landon while he takes his pacifier and falls asleep anywhere within this time range. I usually watch television to stay occupied and whenever he falls asleep I put him in his crib and go to bed myself.
So there you have it. Our friends wonder why we are never able to go anywhere or do anything anymore- that's why. When we do venture out we are on a very strict schedule because a lot of these things just can't be done out in public places. Changing Landon is a great example. Most don't know this, but the stool that Landon passes is extremely acidic due to his intestintal issues. No matter how quickly we change him it always makes an acidic burn which is like diaper rash on steroids, and he has this all the time. The only way to keep this from happening is by completing a nearly 10 minute routine with several products that we have to order. As you can imagine, a public changing table is not the ideal spot for this routine to take place. The people that get in line behind us waiting for the changing table don't understand or appreciate why I am spending so much time changing Landon's diaper.
As you can imagine, weekends are much better than our weekday schedule that I described. For starters, no one in our house gets up until at least 6:30 on the weekends and we start our routine much later. We do have to plan our day around the schedule, but Carson and Austin take a nap during the afternoon anyway and so doing the afternoon irrigation and antibiotics that time just works out well since we are home at that time.
I am going to try to post some exciting updates later this week. Landon is doing some really awesome new things, and we have some exciting news about a new specialist that we are welcoming to the team for Landon's care that we will be traveling to see very soon. So keep checking back for an update hopefully sooner rather than later!
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