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.
Prayers for a happy and productive inpatient period🙏🏻🙏🏻🙏🏻❤️❤️❤️. Maybe it will help that the boys can Snapchat or Zoom each other now. You have all certainly met some challenges in the past year!
ReplyDelete