The Beginning

Wednesday: After a tearful send-off, John took Cole to school (first time back post-Covid exposure), and went to do a couple last minute things (like getting my wind shield wipers replaced).  Cody and I packed up all our last minute items, including a freezer full of food.  We left Cairo around 9:30.  The trip was thankfully uneventful, although Cody told me very often that it was too long! We made one stop in Columbus for lunch, then directly to the AirBNB.  The apartment is everything we need it to be- good size, the right amount of beds, bathtub (although we have found it doesn't hold water well), dishwasher, washer and dryer.  Cody was most impressed that he has his own TV (which we hooked the switch to) and his own bathroom (he normally shares with the 2 other boys that live at our house). John and I took turns running errands to get a few things that needed to be done right away.  John tried to open a PO Box for me because I can't use the mailboxes at the apartment, but it has to be applied for online.  I went to Target for a few things and then Kroger.  I don't know if it's grocery pickup that has completely ruined my capacity for actual shopping in a store, but I was so ready to get out of that place.  Too big, too many options.  I will stick to online shopping and pickup as much as possible.  We picked up pizza for dinner and I spent the evening unpacking and trying to find room for everything.  The downside to this apartment, I will say, is that while it's probably perfect for a weekend stay, it's not well set up for a 2 month stay! For instance, they have so many items available in case you forget to bring them - toothbrushes, razors, makeup mirror, hair dryer, etc etc.  The kitchen items are spread through every cabinet, so there are no empty cabinets to put your own food in except the two small ones above the stove.  There's no additional pantry or closet near the kitchen.  The bedroom closets are GIANT and the kitchen is TINY.  I told John that this apartment is set up for people with lots of clothes and not a lot of food.  The information from the apartment owner asks you to leave things as you found it, but unfortunately I did have to move things around just to have room for our things.  There's plenty of room to store our clothes, but the bathroom and kitchen have been a challenge.  I also take issue with the owner's decision to store the glasses and mugs beside the stove, while the plates and bowls are above the coffee station and next to the fridge (ie ice maker).  BUT whatever. Moving on.  We facetimed with Cole, who stayed with my mom Wednesday night.  (She picked him up from school in Cairo on Wednesday).  He enjoyed seeing the apartment and started planning which toys he would bring when he visits.  

Thursday: We got up and headed to Marcus earlier than we needed to because we did not know yet how the commute would be.  Waze told us it was 10 minutes away, but we wanted to be safe.  Turns out the commute is super easy and we were there 15 minutes early.  We met Cody's doctor who is basically managing his case, had his weight and height checked, and filled out some paperwork.  During his first meal session, John and I were to feed him two "preferred foods" (things he normally eats without problem), and two "non-preferred foods" (things he would revolt against).  He ate pureed baked beans and pureed hotdogs as his preferred foods (even though he doesn't love beans) to contrast against non-pureed beans and non-pureed hotdogs as his non-preferred.  This is just to give the doctors as "baseline," but they also know from outpatient therapy what his eating has been like since he left inpatient therapy 3 years ago.  During the break, we walked around, looked at the fish in the lobby (which he says is the only thing he remembers from being here when he was 3), and hung out.  The second session is just a toy preference measure, basically.  They want to see what games, toys, etc are most motivating to Cody.  They will use things that are the most motivating as rewards, if needed, during therapy.  At home we allow him to watch his tablet during meals, because that was what they used as his reward during his last round of food school.  So currently they are allowing him to play switch or watch tablet during his feeding session.  During session 2, we spoke extensively to the lead doctor over Cody's case.  Most of the things she went over were things we already knew from our last time here, but Covid-related stuff was obviously new.  Oddly enough, after all that stress, they did not even ask to see Cody's negative Covid test results.  John left after session 2, so he could get home to get Cole fed dinner and ready for school on Friday. (Cole stayed with my mom in Albany on Thursday).  My family had some scary Covid-related issues happen on Thursday.  Thankfully, everyone seems ok right now.  Please pray it stays that way!  

Session 3 was back to me feeding him his usual meals (mostly purees, some table texture), but the food was prepared by Marcus.  I expected this to be a walk in the park, because it's stuff Cody eats daily.  But Cody being Cody, insisted that the food looked and tasted different.  The carrots were cut smaller than I cut them.  He refused to eat anything but the pears.  After persisting for a good amount of time, a psychologist came in to talk with Cody and I.  They finally decided that it was possible they made the foods with different brands than I use at home (even though I had been over that EXTENSIVELY with the nutritionist before we arrived).  They ended the third session early.  I felt completely defeated after that.  While I knew introduction of new foods and textures would be very hard work while we're here, I had no idea that eating already well-established foods would take such a sharp nose-dive.  I honestly felt like we were back at square one of food school 3 years ago.  I called John and cried.  Cody cried.  I picked up lunch from Panera (that's gonna get expensive) and sat in the car.  The feeding therapist fed Cody at session 4.  It was pretty rough.  Probably some of the closest to force feeding that I've seen them do here.  But after awhile, Cody relaxed more and began taking bites (very small bites!) on his own.  

After the session, we headed to the apartment. I treated myself to Starbucks.  Cody told me I couldn't cry or have Starbucks for 2 months.  So sorry. Not gonna happen. Also, I recently watched Encanto without my children, because they're nuts and refuse to watch movies.  Anyway I turned Encanto on again at the apartment and Cody went to the bedroom because "Encanto is the worst."  Well, not too long into the movie I see Cody watching from the door way, then makes his way to the couch and when it was time to bath, he didn't want to stop watching! It was funny. 

Friday: We were able to take it pretty slow in the morning, since we don't have to be anywhere until 8:45- much different than the way we usually leave the house by 7 AM to get to school/work.  Anyway, the decision was made that I would feed Cody for 2 sessions and the therapist or doctor would feed Cody for 2 sessions.  There were still some issues and tears as Cody dealt with eating the foods made by the Marcus center that are the same things he eats at home, but he says they are disgusting.  I think it's possible they are slightly different in taste or texture from what I make at home.  While that might not bother you or me, it's a huge issue for Cody.  He is abnormally perceptive of changes to his food, as many kids with his diagnosis are.  There's also a degree of distrust of the Marcus Center, the clinical environment, the feeding therapists and doctors he doesn't know well yet, the people making his food (who he knows isn't me).  So many factors at play.  By the end of the day, he had made a ton of progress towards eating all of his foods without issue.  The one thing he's having the most trouble with is swallowing the carrots after he chews them.  It was taking between 3 and 10 minutes to swallow a bite of carrot on Thursday.  He cut some of that time off on Friday, but not every time.  That's something they'll be dealing with next week.  After food school on Friday, we ran two errands. First, we did a Target pickup order and then we went to a weird, weird store where they have Amazon lockers to pick up our Amazon deliveries.  The Amazon locker thing, if you've never used it, is kind of cool.  You enter a code into a computer and a locker pops open with your package inside.  Cody thought it was pretty neat.  He was mildly disappointed we only did pickup at Target and didn't go in, because "they have toys there."  Friday night was uneventful- dinner and facetiming John and Cole.  

Saturday: Today did not get off to a good start.  Going to bed last night, I already had a homesick feeling.  Weekends without family visits might be difficult, at least at first, while we try to stay entertained without spending much time out of the apartment to avoid Omicron.  I've already had Covid in December, but as far as we know, Cody has not had it yet.  He would have to sit out of treatment for 10 days if he got it and we can't make up the time at the end because we only have our AirBNB for a fixed amount of time.  So all that to say, it might be a lonely, long weekend.  I have been telling him I would try to create a Nintendo account for him on the weekend, so as soon as I got up this morning, he was ready for me to do that.  Well, I set it up but then made a huge mistake adding the account to his switch.  A mistake that can't be remedied without deleting his user on the switch, which means all his data would be erased.  That mistake, coupled with feeling sad already, has led me in a downward spiral.  Trying to cook breakfast in an unfamiliar place, didn't help.  

I have several things to work on this weekend, especially getting Cody's school stuff organized to start on Monday.  We didn't attempt to do any school stuff this week (approved by his teacher!) but we will start Monday.  While I'm anxious about getting it done and being a homeschool teacher, I'm glad it will give us something else to do during feeding sessions.  Honestly one of the worst parts of this week has been how many times Cody has told me that he's bored.  Now I know why my mom always gave me the most boring suggestions when I told her I was bored - like, go clean your room.  It's really annoying when your kids tell you they're bored, plus it was extra hard this week, because there really wasn't anything else to do or anywhere else to go besides play tablet, play switch, watch videos, or read books.  When the weather warms up, there's a playground and a walking trail at Marcus.  There's also a nice playground near our apartment.  There's also a WENDY'S across the street! Only my Wendy's-loving, Cairo peeps will understand that last statement. We don't have a Wendy's in Cairo.  Now I can finally try Wendy's breakfast! 😆

Monday at Marcus (food school), they will start adding in table texture foods to Cody's meals.  I have no idea how they plan to start that process.  At home we would have him kiss, then lick, then hold it in his mouth, then chew on the side on something called an easy spoon.  It sounds like they plan to approach things differently here.... and that could be really hard.  Monday could be a really hard day for Cody.  He knows Monday they are starting new foods.  They plan to start with starches.  That was my choice.  The foods they will add are things he already eats at puree texture.  I'm excited to see his progress, but I'm nervous about the hard work it will take to get there.  I'm guessing I will not be feeding Cody at food school for awhile, until they stabilize some of the new foods they are adding.  Just my guess.  When I'm not feeding Cody, I am able to watch the session through a two-way mirror.  The therapists and doctors watch and coach me from the other side of the two-way mirror when I'm doing the feeding.  Funny story- Cody was complaining about having to eat the purees he says are now disgusting and called his doctor and therapist "mean old ladies" while they were watching from behind the two-way mirror.  They said they were surprised I couldn't hear the laughing from the other side. Just for clarification, both the therapist and doctor are younger than me! Which I pointed out to Cody! They also had to buzz into a session to confirm that Fauci is our cat's name, something they figured out through context clues.  

I think that's all for now.  I think I'll go try to set up our printer now... so please pray I don't end up throwing it out the window! 

Food School: Day 1