September was the month of trying to figure this whole thing out. Basically our life is crazy. I'm not saying yours isn't. I'm not saying I don't love my life. I'm not saying I win the craziest life award. I'm just saying.
In case you all were wondering how in the hell was this feeding protocol going to work out when school started? Well, the answer is.... it isn't.
As you recall, we spent all of July and part of August in an intensive feeding program in Philadelphia. This required that we relocated temporarily and devoted all of our energies when we came home in August to transferring this program to our lives.
They left us with the following instructions:
1. Adam needs to have at least 3 structured meal therapies each day.
This task has become nearly impossible. His therapies can only be done by trained people- me and Philip. So here goes our crazy day:
5 am- I wake up and get ready for work after hitting my alarm clock several times and cursing. for real.
5:45- I wake up Adam for the first time by bothering him
6:00- I really wake up Adam and he yells at me, kicks and screams "NO, I TIRED"
From 6:00 till 6:35am - Adam does a structured meal therapy session.
This therapy session is a train wreck. Typically he gags, coughs, vomits, spits milk at me. Several times I had to completely change my clothes as I was covered in carnation instant breakfast and vomit. He NEVER wants to play with me, no rewards ever work and when it's time for last bite, (this is where we give him the last bite and tell him that it's the last bite and when it's all gone and his mouth is empty, he can leave the table) he asks if he can go back to sleep when he's all done. I sadly have to tell him that he has to get dressed and go to school.
Also at 6:15am Matthew gets dressed and follows a to do list chart that I created for him. This chart lists all the things he must do, he checks them off and follows his list, careful not to interrupt "bites". Phil also gets up during this time and starts getting all the things in the car, making coffee and basically doing other things to help us get going. This morning, he threw a load in the washer because Adam's pull-up leaked and his sheets were soaked- which woke us up at 3am.
7:00 am- we are all in the car
Drop off kids at two different schools and we are off to work by 7:30 am.
Adam goes to two different schools. He gets dropped off at daycare and a bus comes at 8:30 and takes him to a special education disabled preschool program. He gets returned to the daycare at noon and stays there till I get him.
4:00- 5:00 After work I get dropped off at home and I quickly make his meal. All his meals are carefully measured and we have a list of foods that he tolerates. I am usually done the meal when Phil comes in with Adam. Phil will give Adam his meal from 4:15 until it's finished. It takes him about 45 minutes to eat his 3 ounces of food and drink 4 ounces of milk.
5:00- 6:00- I am making dinner for the rest of us, supervising homework and generally telling everyone to stop yelling and hitting and that we do not play ball in the house.
6:00- we eat dinner in 15 minutes or less, Adam wants no part of this, since he just had feeding therapy and something usually gets spilled. I clean dinner up, this takes longer than it did to make.
6:15- baths and showers begin. The floor is soaked. no one ever puts the curtain in the tub and everyone uses 6 towels each.
7:00pm- we must give Adam his third and final therapy meal. This takes at least a half hour, sometimes an hour.
I put Adam to bed- He gets a tube feed directly in his stomach with his feeding tube at 8:30. This feed runs for an hour and is 300cc. He gets another feed at 12:30, which ends at 1:30am.
This gives us about 4 hours of sleep a night.
If something happens like there is an illness, a wet bed, or a delay in beginning the feed at 4pm- the entire feeding schedule is pushed back. So if there's traffic, a meeting at work or something unexpected- then we are screwed and sometimes only get 2 hours sleep- or less.
Phil is great about staying up and I always do the early morning, but we are all kind of awake anyway, Adam is in our room and all the tube feeds and beeps don't make you very well rested.
Also it should be noted that we have piano lessons once a week and soccer. I know. It's crazy. On those nights, we just laugh at the madness of it all and figure that sleep is never going to happen.
Also, because we are completely INSANE, Phil started graduate school in September. So he's gone two weeknights and does much of his work for class at 1am.
My cousin helps us at least once a week and my mom sends dinner one night a week and comes to help. We are always doing laundry, the kitchen is a mess, we wear wrinkled clothing and never pay our bills on time.
I think we are getting the hang of this. October here we come.
4 months ago