1.5 Weeks In...

 Reason #1 why I should update this blog more often... I am going to have a hard time recalling everything that has happened since my last update! 

This past week at "food school" Cody made slow but steady progress.  Please understand that progress to us may be different than what you're expecting.  Food therapy here is genuinely a scientific process! Each touch, lick, and chew is recorded.  Each reaction, negative or positive is recorded.  Food is weighed and measured and, you guessed it, recorded! Last Sunday night Cody became extremely anxious about going to food school the next morning, because he knew they would begin introducing "new foods." There were tears and hard conversations, but we made it there Monday morning.  Thankfully Cody figured out fairly quickly that no one was going to, for example, put a big plate of french fries in front of him and tell him to eat up.  It is a very, very slow process beginning with just be willing to touch the food at table texture.  To back up a step, all of the foods Cody is working on so far are things that he currently eats at puree texture.  We chose to begin working on table texture starches first.  At one of the first sessions on Monday, they presented Cody with a small amount of french fry, rice, and oatmeal.  He was presented with two and asked to pick one that he was willing to touch with his finger or touch to his lips.  They do this comparing each of the three foods to determine which one he is most comfortable with and begin with that one.  The two he was most comfortable with were french fry and rice, so that is what he is currently working on.  Cody has already worked on rice in outpatient therapy, so we were not surprised by that choice.  

For the first couple days this week, I fed Cody his regular foods at two sessions and the therapists worked with him on table texture starches at two sessions.  He was doing so well that then we added proteins.  They determined he is most comfortable with chicken nuggets and hotdogs (both things he eats at puree texture).  They also decided he was doing well enough that we would cut back to my feeding him just once at day and they would work with him the other three meals.  The meal I feed him is the "volume" meal, because it's mostly just to get calories in him around lunchtime.  The other three sessions are called "variety meals."  Outside of therapy, I still feed him breakfast in the morning and dinner at night. 

In food therapy there is a slow build from touching the food with your finger, to touching it to lips for 1 second, 3 seconds, 5 seconds, to touching with the food with your tongue for 1 second, 3 seconds, 5 seconds, to holding it in the mouth for 1 second, 3 seconds, 5 seconds, to chewing once, three times, five times, eight times before spitting it out, to finally chewing and swallowing.... I know... a long process.  Over the course of the week Cody is up to chewing rice three times (he sometimes chooses to go ahead and swallow, since this is a food he has worked on before), holding french fry in his mouth for 5 seconds, holding chicken nugget in his mouth for 3 seconds, and I honestly can't remember about hotdog.  Hotdog was the last food they added this week, so I think it may have been touching with tongue for 3 seconds.  Like I said, this progress may sound like nothing if you have a typical child, but for us it is significant.  What is most significant to me is Cody's attitude about everything.  Is he excited to be here?  No.  But he's being asked to do things that are VERY hard for him and he is not freaking out.  You may remember from my last post that one of the first things they do here is figure out what toys/videos/etc are most motivating to the patient, in case they need to use those things as rewards.  Say, touch this to your tongue and I'll give you your game for 30 seconds.  That was what we had to do with Cody on his first visit to food school.  His motivator was Paw Patrol at the time, so we would pause the DVD, have him take the bite (or whatever it was he was being asked to do at the time), then he would be rewarded with 30 seconds of Paw Patrol.  This time, because he's been compliant (so far), he is allowed to play Switch (his motivator right now!) for the whole session without it being taken away and used as bribery! I think this is significant.  We will see if this attitude holds up when he begins to chew things this week that he has not chewed before.  There are other steps they could add to help him chew if the current course does not work.  In outpatient, we had to put food in a tiny tube with a slit in it, place the tube on his back teeth and have him chew on the tube.  Because it had a slit in it, tiny pieces of the food would come out.  I am hoping the tube won't be necessary.  They have determined he does not have motor skill deficiencies involving chewing or swallowing.  It's all a texture/sensory issue.  

This was our first week of "homeschool" also, since we were able to take off the week that Cody came up here.  We are so thankful Cody's teacher has been so accommodating and helpful as I've figured out how to be a stand-in 1st grade teacher.  Cody has not had a great attitude about school (up here) and that has been difficult.  I don't really know how he acts at real school, but here he acts like I'm torturing him when I ask him to do his work.  Plus, some of this work is ummm really stupid.  Like, this phonics workbook he has to do.  UGH!  I have a hard time understanding it myself.  If you know how to spell a word, why is it important to know why it's spelled that way or whatever.  I have to ask John to remind me what long and short sounds are.  Who cares.  Math has been the easiest.  Writing was the thing that sounded most fun to me, but Cody has not enjoyed it.  He ended up with all 100s and an 80 on the four tests he takes at the end of each week.  The 80 was on comprehension of the story of the week and I honestly thought the test was pretty hard myself! I wish, as the teacher, I knew the questions on the test ahead of time, though, so I knew what to point out and focus on.  Oh well.  I'm lucky Cody is such a smart kid and can still be successful without a great teacher! 

In addition to school, our big event this week was having blood drawn at Egleston so the nutritionist could see his nutrient levels.  I was quite proud of myself for locating the hospital and parking in the parking deck.  We don't have a lot of parking decks in Cairo, as you might guess.  The lab was not hard to find, but they already had printed out directions to the lab on little cards to follow.  He was the only person in the waiting room, so there wasn't a long wait.  I don't think Cody really knew quite what was going on except that I had used the word "blood" a lot and that sounded scary! He freaked when he saw the needle, but he stayed sitting in the chair, at least! I had told him I would give him $10 if he didn't cry. Obviously, he did! But the nurse agreed that he still deserved the $10.  Somehow $10 turned into a new Switch game.  They cost way more than $10, in case you didn't know.  But the game was well worth it because he loves it and has played it non-stop since we got it.  

Our other big event was that John and Cole came to visit us! They arrived around 7:15 Friday night and left today around 12:30.  Man, I didn't realize how used to the quiet we had gotten.  Cole is very different from Cody - constantly talking, moving, and inventing games.  We mostly hung out at the apartment other than a trip to Target and the strange Amazon locker store.  We played two rounds of Animal Crossing Monopoly, the second of which, Cole won! The boys had fun being together and it was nice to cook for two instead of one for a change.  We were sad to see them go today, especially since it will be about 3 weeks before they return.  I was teary as they drove away and Cody took my hand and said "awww... it's ok. They'll be back.  Let's go inside.  Maybe you need a snack."  (Words he has definitely heard from me whenever he's upset.  So many things can be fixed with a snack.)  

The minutes have ticked by slowly today since they left.  I ordered in from Food Terminal and it was amazing.  I am appreciating all the food options and trying to only indulge in ordering out a couple times a week.  We've also started coming back to the apartment in the afternoon break at food school, so I am able to eat here rather than picking up Panera or bringing my lunch to the Marcus center. Cody has been disappointed I didn't follow his no Starbucks for 2 months rule he instituted the first day of food school as it's been a regular stop for us on our way home many afternoons.  

I'll leave you with a funny story.  At home I have a programmable Keurig that makes a pot or a traditional Keurig pod.  I program it the night before to have my coffee ready when I get up the next morning.  I bought an actual coffee pot for this apartment instead of a tiny Keurig that's here, but didn't spring for the programmable bit.  Instead, I have taught Cody how to flip the switch to turn the coffee pot on when he gets up in the morning (always before me), so my coffee is ready when I get up.  He rolls his eyes every time I thank him for making my coffee :)  Speaking of which... I need to go get that set up now, so Cody can make my coffee in the morning.  More soon.  Thanks for keeping up with us. Keep up in your prayers.  

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

Our Covid Christmas.. plus an update!

 First what you're really here for --- We have a start date! Actually, we've had it for awhile, but life took over (as usual) and I haven't gotten around to posting on Facebook or here on the blog.  Cody and I will move to Atlanta (with John's assistance) on January 19th.  Cody's first day of treatment at Marcus will be January 20th.  We were able to book the AirBNB I was hoping to get, thanks to the financial help of my parents.  Once I booked it, I was able to get the address and confirmed that, yes, it is only about 10 minutes from the Marcus Center! We are hoping that the photos on the website were not glamorized too much and the apartment is a safe and comfortable place for Cody and I to stay and for our family to visit.  We have booked the apartment through March 19th (Dr. Fauci's birthday... the cat, that is). I have prepared 9 weeks of lesson plans for a substitute to implement and I have met with Cody's teacher to get the preliminary information I need for his school work while we're gone.  

In the meantime, we have had a wild month since the last time I updated.  December started great.  The boys are at such fun ages and were super excited about Christmas.  I loved decorating our "new" house (again) for the holidays.  Cody and Cole both participated in great Christmas programs at their schools and had fun with their classes before getting out for Christmas break.  We made plans for John's brother's family to come down and visit us in Cairo before Christmas, then have my parents down on Christmas morning before heading to their house for Christmas dinner.  I made the meal plans, did the shopping, bought the gifts, and had almost everything wrapped.  Then, I tested positive for Covid the Monday we got out for Christmas break.  I went home and fell apart. John took the boys to be tested and they were negative.  I then isolated in my room for the next 8 days (10 days after my Covid symptoms started).  I am so glad that my illness was extremely mild.  I give credit to my triple dose of Moderna! For the most part, I was no longer symptomatic by the time I had the Covid test.  I had a fever, felt "off," and started coughing Saturday night.  My at-home Covid test was negative.  I felt extremely tired, "off," and had chest congestion on Sunday, so Monday morning I went to the doctor. John's family was scheduled to arrive the next day.  Monday I felt much better than I had all weekend and continued to feel fine for the rest of my isolation.  I also had the antibody infusion, but since I was already feeling ok, I can't say for sure if that helped me recover as quickly as I did.  What was way worse than my Covid symptoms was the disappointment I felt (and continue to feel) for "missing" Christmas.  This probably sounds dumb, but one of the hardest parts was not being able to prepare any of the food I had planned to make.  John is not much of a cook, so figuring out meals he could make or I could come out and make for just myself while masked was a challenge.  What John did excel at was single parenting the boys for their quarantine! I was never within 6 feet of the boys, so he did all the bathing, feeding, playing, answering endless Cole questions, etc while I sat in my room and watched tv and put puzzles together.  Had our roles been reversed, I may have been able to handle the cooking situation better but I would never would have handled Cody and Cole with as much patience as John!  John and the boys tested out of quarantine on their 7th day after their last exposure to me (Monday AM).  Immediately after, the CDC made the decision to shorten quarantine time for those exposed without symptoms! Perfect timing! Ha! Once we were all finished with isolation and quarantine, we had a happy reunion and went to St. Simons Island for a few days with my family. 

We appreciate all the kind comments we received from the last post.  I may post a little more in the way of a Facebook status for those who aren't interested in taking the time to read this blog.  Understandable!  Please continue to pray for us as we prepare for our time away.  I don't think Cody  has quite grasped what it will be like to be separated from his bestie, Cole, for 2 months.  Cole is the more sensitive one, as I mentioned in the last post, so he is already feeling sad about the separation.  My anxiety is in overdrive when I think about all the things that need to go right - no one get sick or have any emergencies between now and the end of treatment in March!  I am feeling high anxiety today about getting all my leave sorted out and figuring out how to cover my leave with a combination of sick days, John's sick days he can give to me, a request to the sick leave bank that may or may not work... or if I'll need to have a couple weeks of unpaid leave.  To say I am thankful to have the means to go forward with this without knowing all of these answers is an understatement.  I am extremely lucky to have a supportive family and husband- both physically and financially.  We need this to happen so we will make it happen.  But I know there are families out there that need this treatment who simply cannot make it happen.  Thank you for supporting us in the next step of our journey with Cody!