Too Much

 Well, it's been more than a month since my last post.  I have thought about writing many times, but the idea of condensing ALL that happens here into a readable length blog post is overwhelming.  Obviously, it didn't help to put off writing even longer, but here we are.  I am not going to be able to remember everything that happened in the last month, but I will do my best to highlight the important food school things and maybe a little bit of our outside lives too.  

I guess the largest bit of information that I never wrote about here (but did post on Facebook) is that Cody's doctors determined that it would be best for him to stay 10 weeks instead of 8, as we planned.  When we were first asked to add 2 weeks, I couldn't agree to do it right away because there are so many other things that had to be worked out - could I afford to potentially have more unpaid leave from work, could we rent our AirBNB for the additional two weeks, etc.  Within the day though, John and I had discussed everything and decided that we would do whatever it took for Cody to stay the additional two weeks.  In our first admission to Marcus in 2019, I would have cried had they asked me to stay two extra weeks. It's not that I don't feel sad this time, but I will spend every minute here they allow us to, because now we know how hard advancement is in outpatient treatment.  To make a long story short, instead of finishing next week, we now have 3 more weeks of "food school" to go.  I could go on and on about my mixed feelings about that, but I'll spare you.  Message me if you want more details. 

Also, right after my last post, Cody took a sharp turn (for the worse) and we spent a few days trying to figure out why he wouldn't/couldn't swallow the foods that we had already made so much progress on.  In the end, I don't know that they ever really figured out what was happening except that maybe too many changes happened in one week (adding new foods, adding a new team member to Cody's feeding team, etc).  I'm happy to say that we were able to move forward again quickly within in the next week and things are back on track.  

I can't express in condensed enough form just how slowly progress is made here.  I think I described the steps in adding new foods (touching with finger, touching to lips, touching to tongue, putting in mouth, chewing, swallowing... and each step has multiple levels of time to become stable, etc).  However, Cody is now swallowing carrots, green beans, peas, rice, gluten free bread, french fries, chicken nuggets, and hotdog all at table texture (in addition to pears, peaches, and strawberries).  He is chewing string cheese and pineapple.  All of the things I listed he is swallowing, I am able to feed him at home (except the bread, so far).  I'm sure we will have the other things on board soon.  For awhile the chicken had to have all the breading cut off, but in the last week or so they were able to return to serving the chicken with the breading.  They are also nice sized bites now rather than needing to be cut into 1/4 inch by 1/4 inch squares.  We are doing a table texture meal for 20 minutes at home every other night in addition to a puree meal.  It is double the work right now, but we are hoping that soon the bite sizes and grams he is consuming per meal will increase enough that we can do all table texture for dinner and all puree at breakfast.  

I feel the need to point out that all of Cody's foods require preparation and an adult to be with him at the meal, so nothing we have done in therapy will be obvious at school.  We are making preparations to be able to serve new foods in his lunch box someday though, by having him learn to eat bread and string cheese here in clinic.  If there is time to add another food before we go, it may be an almond butter and jelly sandwich on gluten free bread.  If Cody is ever able to take a sandwich to school in his lunchbox, I will cry.  Maybe I also need to point out, that even though he is eating chicken nuggets and french fries,  you still won't see us in the McDonald's drive through.  Every food is brand specific, cut in the appropriate size pieces (most 1/2 inch), and every bite is served individually on a spoon.  There's also a timer of 30 seconds between every bite. He has to finish swallowing before the timer goes off or else he has to pause the game he's playing or video he's watching.  (Don't even start with me about screen time at the dinner table... it's just a part of the process for us at this point and I'm way more concerned about my child eating than I am about screen time). 

What is most exciting about Cody's eating most recently is that he has expressed the he LIKES chicken nuggets!  I had a feeling hotdog and chicken nuggets would be his favorites, because they are two of his favorite purees.  He is able to talk to me more about food without becoming overwhelmed or anxious.  He has not had significant behavioral problems in clinic in his meals.  He's basically been pretty agreeable and able to play a part in his own treatment.  They are able to ask him questions about their plans for adding new foods or what the next step in treatment will be and he is able to participate.  While I know that Cody might seem like an anomaly to you, because you know no other children like him, trust me that there are many other children with us at Marcus (some older, some younger) who are also struggling.  The girl who uses Cody's treatment room in between our sessions is 8 and will be here for 12 weeks.  This is her second admission to a program like Marcus.  Do not take your child's eating for granted.  I cannot look at pictures of your children eating anything on Facebook without feeling incredible jealousy.  It's an intensely difficult problem that is isolating because it's so hard to understand. Ok sorry... getting off the soapbox...

Learning the process of adding table texture foods from beginning to the outcome of chewing and swallowing has been so valuable for me as Cody's parent.  I feel like I can use this process (perhaps even with Cole!) going forward to potentially add even more foods to Cody's diet.  Honestly, I want him to eat more junk food! Ha! Obviously the doctors are working with a nutritionist and would not be interested in adding chocolate chip cookies to his diet :) ... but if I have the skills, maybe that is something we could add at home.  I have said from the beginning that I need him to eat things that don't have to be refrigerated or heated up- chips, cookies, sandwich, lunchbox foods! This feels more attainable now. It's more attainable than thinking we will ever get him to eat food from a restaurant.  While I would love that too, the lunchbox is first in my mind right now.  

Hopefully that is enough update about "food school" and I will quickly run down what we've been doing outside of school:

- John and Cole came back to visit us and we went back to Zoo Atlanta. They were troopers on an especially busy day at the zoo. We had a lot of fun and came out with $40 worth of stuffed animals.  Cole will make one more trip with John to visit us this coming Friday through Sunday.  We hope to take the boys to the Atlanta Children's Museum.

- My parents came to visit and took Cody to the Georgia Aquarium.  Cody enjoyed it, so I hear.  I used the opportunity to have some "alone time," since that's not a possibility while I solo parent in Atlanta during this time.  Cody is pretty easy to handle though, as he also enjoys spending lot of alone time playing Switch and watching YouTube.  Again... keep your screen time judgement to yourself! 

-Cody and I made a quick trip home to Cairo last weekend.  I second guessed myself all week on if driving all that way with Cody would be worth it.  We were able to skip our late afternoon session on Friday and left Atlanta about 12:30.  We hit some terrible traffic due to a lane closure on 85.  We pulled into Cairo around 5:45, just in time to get Cody's haircut! I'm so thankful LeeAnn was able to see us, because Cody has gotten so much more comfortable getting haircuts with her and I didn't want to take him to an unfamiliar place in Atlanta.  Cody doesn't audibly express a lot of joy and happiness actually, so I was beaming when in the backseat Cody was screaming "I'm so happy!!!" while we drove through Cairo to our house.  We were both excited to sing "Cruisin' 94!" when we were able to tune in to his favorite radio station. Part of my purpose in going home was to write two more weeks of lesson plans for the additional time I'll be out of my classroom. I got to snuggle my cats!! The trip home was a breath of fresh air.  Nearly everybody cried when it was time to go (y'all know John Scanling is a softie right?), but I am so glad we went after all.  

-This has been a slow, quiet, and COLD weekend.  Cody has had some congestion and a little coughing this week, so we have taken it slow and hung out here at the condo.  John's brother, Paul, and his family came over yesterday to have our Christmas present exchange that was canceled when I had Covid in December.  It was nice to see them again and catch up.  

-Like I said, John and Cole will be back this Friday-Sunday.  Then, John will return the following Wednesday to do a couple days of training at Marcus.  He'll be back one more time - April 1st to help us move back home to Cairo!!! 

-The week after we get home from Atlanta is Spring Break in Grady County.  I could not have asked for better timing.  A week to get our lives back in order, write lesson plans, clean the messes John and Cole are immune to, etc is DIVINE.  We made no plans to go anywhere for the week, because I just want to be home and get settled in before life takes off.  Cody and I make our return to Southside on April 11th.... almost exactly 3 months since my last day of work in January.  Wow.  It's been so long but feels so short.  

I can't end without saying THANK YOU to everyone who has sent cards, gifts, money, messages, etc.  We are so incredibly privileged to have this opportunity.  We could not have made this happen without our support system of family, friends, and co-workers.  I could write two more paragraphs about how I feel about this but this post has already gotten long.  

Thanks for reading.

Swallowing

It's been too long since my last update to try to tell you everything that's happened, but I'll shoot for a quick recap.  

Food School: Cody has made a lot of slow and steady progress.  As of today, he is chewing and swallowing small pieces of French fry, rice, and chicken nugget.  He chewed and swallowed one piece of hotdog yesterday, but today they pulled back to just chewing the hotdog until he's consistently swallowing the chicken within 30 seconds.  He made a lot of progress with that from yesterday to today.  They have added vegetables to a session. He is currently working on peas and carrots.  As of today he is holding both in his mouth for 5 seconds.  Cody was previously eating table texture carrots at home, but he began "packing" - technical term for holding or chewing food without swallowing for an extended period. We were going up to 10 minutes on a single bite of carrots.  So, they changed the type of carrot from frozen (steamed) to canned.  They went back to square one with touching the carrots to lips, etc, so we are basically starting from scratch with carrot.  He has also worked on rice in outpatient, but was also having some issues with swallowing, so they went back a few steps on that one too.  He's back to swallowing it now.  

Last week we had Cody's "goal meeting" with his treatment team.  John was able to come to meeting via Zoom.  The team agree that Cody is already making a lot of good progress. The goal is for him to gain 8 new table texture foods before we leave.  He already eats 3 table texture fruits and they will add 8 more starches, proteins, and vegetables.  He may be able to exceed the goal, but they feel that 8 is achievable. There may come a time later in treatment where we need to decide whether to pursue adding more foods or increasing the bite size.  Currently, I think we would/will choose to increase the bite size over adding variety.  I expect that we will not be throwing away our blenders when we leave food school this time.  I think he will be eating a mix of purees for volume/calories and table texture.  The "bites" of table texture are SO small at present and I don't see how at this rate he would be eating enough of any table texture foods to fill him up at a meal.  All I can do is pray that this next stage of eating when we get home is not MORE complicated than it already is... but I have a sneaking suspicion that it will be, at least for awhile.  I think it's pretty possible when I get home that I will need to prepare both puree and table texture foods.  I just hope doing both does not feel like my work load is doubled.  They have not mentioned yet when we will begin working on table textures at home during breakfast and dinner or on the weekend.  

Outside of food school: We had a fun visit with Boss and CC (my parents) this weekend.  They stayed with us Friday night through Sunday at lunchtime.  They showered Cody with gifts and attention.  We went shopping and to Fernbank on Saturday.  Cody even sat through the IMax movie, although we were disappointed that it's not in 3D right now due to Covid.  His favorites parts were NatureQuest (the kids area) and the science area. 

Our everyday life is pretty repetitive and mostly boring.  I've settled into a routine of audiobooks and crossword puzzles while Cody is in his sessions with the therapists.  Cody is firmly addicted to Switch and will have a hard time transitioning back to the real world of going to school full time.  We work on "homework" during each break.  We both still hate it, but Cody has been less argumentative about it the last couple days, at least.  Our least favorite is still phonics.  I dislike being the teacher, because I take all the blame if he misses any questions on his tests at the end of the week.  We come home for lunch on our "long break" from the time Cody finishes his 11:45 session (sometimes as early as a few minutes after 12, it's a puree meal for volume) until 2:15 when we leave for Marcus.  The last session is at 2:45, but traffic can be unpredictable.  

Even in the "big city" our world has been made smaller, in a good way, by the people we see and places we visit regularly.  There's the guy walking his two huskies at the condo, the lady who walks to work always dressed in a skirt and ski hat after dropping off her child at the preschool at Marcus, the ladies at the UPS store who greet Cody by name while he hides behind my back, the woman in her athleisure wear and Madewell belt bag she wears crossbody on her way to and from the Starbucks on Briarcliff - not to mention the playground, Target, Publix, Starbucks (multiple), and other stores we do not need GPS for anymore.  We are fully "settled in" and enjoying our circumstances as much as possible. You will never convince me to live the city life after my adventure trying to park at Trader Joe's, but I can appreciate many aspects of Atlanta living.  

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! 

Here We Go Again

It has been so long since I updated this blog.  And I am returning for a very important reason - Cody and I will be making another trip to "Food School" in 2022.  This will be another 6-10 weeks of treatment with the goal of "texture advancement."  We will not know our start date for awhile but we expect to begin early to mid-January.  We will plan to be there for the full 8 weeks, which is the typical treatment time. It could be shortened or lengthened by 1-2 weeks.  Three years ago we finished Cody's treatment in 7 weeks.  We hope things will go as well this time.  I will be taking leave from work for the time Cody is in treatment. Cole will stay here in Cairo with John.  Those are the big answers to questions you may have.  If you want more details... keep reading. (If you're new around here and I want to know more about why Cody needs inpatient feeding therapy, go back and read the first post on this blog.) 

Cody has made progress since we left treatment.  Actually, going back and reading these old blog posts has shown me more clearly how much Cody has grown and changed over the last 3 years.  He was diagnosed with autism shortly after we finished our feeding treatment at Marcus.  He continued to go to "food school" once every couple weeks for awhile, then dropped to as many at 6 weeks between feeding appointments.  You have to remember- as part of the inpatient treatment program, Cody had four 40 minute "sessions" a day.  Outpatient treatment drops to ONE session every few weeks and now once a month.  Obviously, progress naturally slows WAY down from inpatient treatment.  However, his accomplishments in outpatient treatment include self-feeding all his meals and advancing to "table texture" (whole food pieces) on 5 of his purees (peaches, pears, strawberries, carrots, and rice).  When the pandemic hit, we stopped going for in-person appointments at Marcus and were very hesitant for a long time to try virtual appointments.  As most of the world did, we expected the pandemic would end and we could get back to our regular treatment program.  When we realized that was not going to happen, we began having monthly virtual "food school" sessions.  They've been more productive than you might have thought, but we still felt we were progressing at a snail's pace.  

We have two real motivating factors for going back to inpatient treatment.  One, we would like to give Cody more help to progress to table texture more quickly.  At the rate we are progressing at home, it will be years more before he is completely on table texture.  Two, I personally am desperate for a change in the lifestyle Cody's feeding disorder dictates for our family.  I have reached a level of frustration where I have said "If Cody would just eat a hotdog, I would microwave him a hotdog every night for the rest of his life."  I am so, so tired of running the blender, packaging up little containers of food, keep our freezer sufficiently stocked, and remembering to take food out of the freezer to defrost for upcoming meals.  Traveling is nearly impossible unless we are going to stay at my parents' beach condo where we have access to a full sized refrigerator, freezer, and microwave.  We also keep his bowls, spoons, cups, and an extra blender there.  When we travel, we have to bring everything Cody will eat for the entire journey and stay.  We even bring his "safe foods" (crunchies and monkey yogurt, basically) as we can't risk the local grocery stores having his foods in the right brands and flavors.  I am not even sure what kind of change in this I can expect from our next round of treatment.  I expect everything will still be very brand and flavor specific.  Treatment is not going to make him decide to try new foods.  Treatment will help him chew the foods he already eats.  That is my expectation.  We will not be going out to order food at a restaurant after treatment.  We may be able to buy a package of hotdogs to microwave on our trip rather than frozen tupperware containers of pureed hotdog.  From a "normal," outsiders perspective, that might not seem like a big change, but, for us, it would be life-changing! I don't expect Cody to be "cured."  I know he can make progress.  

We were actually asked to begin treatment back in November, but we knew that would not be a possibility for our family with everything going on during the holidays.  So, someone else began their treatment in Cody's place.  He/she will have 6-10 weeks of treatment, then it will be our turn.  This is why we don't know our exact start date yet.  When they are closer to knowing how long the person ahead of us will be in treatment, they can give us a more accurate start date. It's been nice to have this "heads up," at least. Last time, we received our call from Marcus and began treatment two weeks later.  This time we know it is coming and we have more time to prepare.  As far as accommodations, AirBNB & VRBO have exploded in the last three years.  We have so many more options for housing, but they have gotten more expensive! I have been stalking AirBNB for weeks and I found a condo/apartment that seems perfect.  It has enough room for Cole and John to come and stay with us when they can.  It is 9 minutes from the Marcus Autism Center!! It has a bathtub, washer, dryer, and dishwasher. (all key features!)  The hard part is, I am not able to book it until we have our start date at the Marcus Center.  I messaged the owner and explained our situation.  He has offered to block off January and February from being rented until December 8th.  I'm not sure we'll know our start date by December 8th, but pray I at least have more information I can share with them.  I would love to find a way to pay them a deposit without knowing our exact rental dates, but I know that's not how AirBNB works.  I am asking a lot of these people to trust a stranger on the internet who claims she is going to rent their apartment for 2 months.  If they can trust me, they will benefit financially over letting others book a weekend here and a weekend there, taking away our chance at renting for two months.  I hope all of that makes sense.  Please pray we are able to rent this apartment, because it as perfect as I have found so far.  

In addition to praying Cody's treatment goes well and that we are able to get the housing we want, my biggest prayer request is for Cole.  Three years ago when Cole was only 18 months old, he had no idea what was going on when Mommy and Cody left for nearly 2 months.  He stayed sick during those 7 weeks and I only got to see him 2 times.  All the tears were mine, though.  He didn't know what was going on and was content at home with John or staying with my parents when John was busy with band.  But now.  Now Cole is 4 1/2 (don't forget the 1/2) and he and Cody are absolutely best friends.  Even talking to Cole now about us leaving causes him to cry.  For better or worse, both of our kids kind of have a "preferred parent."  Cody's is me and Cole's is John. They are Team Dog and we are Team Cat.  So, I'm thankful he'll have his Daddy.  But he is going to miss Cody so much.  Cody is going to miss him, too, but Cole is the more social one of the pair.  And me.  I am going to miss Cole and John so much.  The plan is to visit each other 4 times during treatment.  I don't know if that will be Cole and John coming to Atlanta 4 times or if Cody and I will come home.  We did not visit Cairo at all last time. His treatment doesn't end until after 3 PM on Fridays, so we could not get home until very late and would need to return Sunday for treatment Monday morning.  Cody is probably a better traveler than Cole, if you leave out the eating part. So, we'll see.  

So, that is the update.  We will post the exact moving date and treatment start date when we know.  We are not doing a GoFundMe or anything like that, but appreciate all your prayers. 

One Day More

First off- sorry that I haven't kept this blog up the way I intended to.  My need to "chillax" has outweighed my willingness to rehash our day on the blog.  

I guess the title of this blog gave away our big announcement.  Tomorrow is our last day of inpatient treatment at The Marcus Center!!! Cody and I have a bit of senioritis and are "over it." We're so ready to go home!! John was here earlier this week and finished his training on self-feeding.  Cole was not able to come, because he got very sick.  My mom kept him for 8-10 nights in a row. I lost track.  If Cole was able to come up to Marcus, we would have had some sessions where the whole family eats together.  We may do some of that in outpatient therapy over the next few months.  Cody's progress has been GREAT! He's drinking from a regular toddler-sized cup, but still prefers the little pink cups with the cutout.  He's self-feeding himself at every meal with very little issue. At the end of last week he got extremely constipated from refusing to poop and started throwing up repeatedly at his meals.  There was just no where for all that food to go, I guess! They sent us home on Friday with orders to discontinue protocol meals and allow him to eat him "preferred food" until everything was "back in order" so to speak.  Cody drinks Miralax daily, but it's been difficult to get it in him, since he no longer drinks juice with dinner.  I'll spare you the details of everything that went on over the weekend, but we got everything cleared out and were able to resume protocol meals.  Since then he's had mostly good days.  He's definitely over "food school" and is looking forward to being home and going to the beach with our family. 

The plan we made earlier this week in knowing he'll be finishing up Friday is to go down to 3 meals rather than 4 during the school day.  This will more closely mimic his actual schedule and intake after discharge.  Knowing that Cody prefers Mommy or Daddy to feed him more than anyone, I agreed to feed two out of the three meals during the day and take my "break" during his lunch meal.  Today instead of hanging out at Marcus from 9:25 when breakfast ended until 11:45 when lunch began, we went to Target, the Pet Store, Dollar Tree, and Panera.  It was a nice break.  We also skipped our nap and went to the playground instead.  See... senioritis.  The schedule won't be quite as nice tomorrow, because they are going back to 4 meals.  Cody has been working on self-scooping during lunch, but that means he gets a lot fewer grams of food.  He's not able to scoop quite as much as the grown-ups feeding him yet.  So they decided that tomorrow he will do self-scooping during snack time and they'll lower the gram cap for lunch to accommodate how much he feeds himself at snack.  

Today they brought me some paperwork to fill out for Cody's discharge.  I pretty much wrote a book in the comments section of the life impact survey.  The good. And the bad. Obviously our lives have been greatly affected by Cody's time here in Atlanta.  Have these effects made our lives easier? No.  We are so glad to see Cody eating a wider variety of food.  That is the most obvious positive change. He's gained 2 lbs here and grown in height also. He's also drinking from a cup that does not have a sippy spout- another great change! But this treatment has created a whole new level of work for us as parents.  We're now tied to 30-40 minute sessions multiple times a day where we must follow certain procedures and protocols to keep Cody's therapy going.  He's lost the ability to eat breakfast and dinner independently as he was doing before, because he can't feed himself the protocol meals, which we are calling "school food." We've lost the ability to sit down and eat our meals at the same time as Cody and Cole, which we mostly had before treatment.  Cody's teachers at school will not see any obvious change from therapy, because he will continue to eat exactly the same things during the school day that he ate before we came to therapy.  We've added to our load the need to buy 16 brand specific foods, puree them according to certain recipes for each food, store them in our limited freezer and fridge space, and wash those annoying little cups every night.  Cody will need 24 small containers of food each weekend and 40 throughout the week.  We have to do several oral motor exercises with Cody daily to keep up his progress on learning to chew. To keep this a positive thing, we have to see this as step number one in a long process to get Cody eating like a "normal" child. 

Therapy has changed my perspective on Cody's eating.  As I always have, I see him as being afraid of food.  Prior to treatment I thought that's all this was-- a fear of new things, a fear of new tastes, an unwillingness to change, wanting to stick with routines, etc.  But now I also see that his fear comes from an inability to physically chew and eat food.  If he had progressed as a "normal" baby to 4 year old, he would have naturally developed this ability.  But for whatever reason he was not willing to try foods and never learned to chew them properly.  I guess this is a chicken and the egg question.  Did he not want to eat food, because he didn't understand how to chew? Or did he never learn to chew, because he wouldn't try foods that needed to be chewed?  All the things Cody will eat do not require a great deal of chewing.  They dissolve easily or are already pureed.  This really struck me when I fed him corn one night that I had prepared here at the apartment.  It was the first time he had corn outside of the Marcus Center and I knew the texture was much thicker than I had served him at "school."  I knew I had followed the recipe, though, so I went ahead with it.  That thicker texture and maybe a few extra corn hulls that didn't get strained out caused him to throw up two times until I finally took the corn out of the meal that night.  He just can't handle the texture.  He won't just pick up a chicken nugget and eat it, because he can't. Not right now.  There is a process for learning to chew that we are going through.  Once he's passed certain levels in his oral motor therapy he'll progress from pureed food to less pureed food. :)  Eventually he will eat whole foods, but I do not expect that to happen within the year.  

Cody's outpatient therapy will begin April 18th.  He will come every other Thursday for the foreseeable future for therapy.  My mom, John, and I will rotate bringing him up on Wednesday afternoons, spend the night, have therapy on Thursday, and drive home.  We are hoping to stay at the Ronald McDonald House for some of our overnight stays.  

I just remembered that Cody's diagnostic interview for ASD happened and I didn't update on that.  John was able to be here for the appointment, which took place two floors up from feeding therapy.  It lasted over an hour and mostly was just the doctor asking John and I a LOT of questions about Cody while he played.  The doctor got enough information to decide that she wants to see Cody again for the next step in the diagnostic process.  I mentioned to her that I feel like Cody's diagnosis might be anxiety and sensory processing disorder rather than ASD.  She agreed that it very well could be that.  She wants to learn more about Cody's social behavior at the next appointment.  She suggested reading up on high functioning autism or Asperger's, because that's what we would be dealing with if they decide he's on the spectrum.  

Tomorrow will be Cody's last day at clinic and I'm pretty sure there will be a small celebration for him at the end of the day.  My parents are going to Cairo tomorrow to pick up Cole from daycare and take him to St. Simons.  John will drive up to Atlanta after school and spend the night with us here tomorrow night.  We will load the car as soon as we can on Saturday and drive home to Cairo.  We'll unpack the car and repack for the beach. We'll leave for St. Simons from Cairo as early as possible on Sunday.  I will finally see Cole!! We'll stay at St. Simons with my mom, dad, brother, and nephew until Thursday.  We'll spend the rest of Spring Break in Cairo.  I will hopefully get to work a couple days, so I can be prepared when school starts back next Monday.  But first... I'm setting my sights on getting through tomorrow and celebrating with a big slice of red velvet cheesecake from a place called CheeseCaked that's right around the corner.  My sweet reward.