Super delayed post, but... Ayden's taking bites!

Okay, okay, okay. I know it's been a while. Too long, in fact. The truth is, Ayden has been a real handful, and I've been super tired and emotionally drained. Therapy, his behavior, covid concerns, and the world's stresses are all hugely affecting me. I'm holding it together, but I will not lie, it can get tough at times. It has been especially hard learning about the turmoil in Afghanistan. I'm sure all the veterans out there, especially those that spent time in the middle east, understand what I'm feeling. It's heartbreaking, frighting, disappointing, frustrating ( I can go on and on) seeing that. I know, I must let that go, for now, so moving on.

To catch everyone up on Ayden, let me start with last week. Last week, we moved back to pureed food from the juice. Ayden had a tough time consistently remaining stable. Once we got to the point where he was calm, he still had a ton of saliva that he was producing that made it difficult to tell if he was packing or not. When a child packs, they are not swallowing their food and instead just holding it in their mouths. To combat the packing, they then decided to do a "clean out" before giving him a bite of food. The cleanout is cleaning out all the extra saliva and any leftover food that may still be in Ayden's mouth after his last bite. So, to visualize, these are the steps: First, Ayden will get a bite of food. They wait several seconds (there is a timer that will let you know when to proceed), then they take a separate soft spoon and scoop out all the excess saliva and food under his tongue and around his mouth. Did he like this? HELL NO, but it did promote him to swallow more independently. I don't have a clue how it worked, but it did. Ayden started to have less and less pooling and slobbering. We were going through so many towels and shirts each day! After every meal, Ayden had to change his shirt, and I would wash towels during our lunch breaks.

Ayden started showing significant improvement, and then they made another subtle change. Instead of giving Ayden a bite of food, giving him a specific amount of time to swallow, do the clean out, and then immediately give him another bite, they are now waiting for him to swallow everything completely on his own before proceeding to the next bite. At first, the feeder would go in and clean out his mouth regardless if he swallowed it or not. By doing the cleanouts, it did help him swallow, but it also allowed us to see how much food he was actually swallowing versus how much saliva he had pooling in his mouth. Now, after the food is placed into his mouth, he is given unlimited time to swallow. They continue to do checks to see if he has swallowed all of the food. If he hasn't, they keep encouraging him to swallow and wait. Once he finally swallows, they do another cleanout to ensure all is gone and proceed to the next bite.

Within one 40-minute meal, Ayden can have 30 good bites and swallows or only 5. He sets the pace. We are looking for easy acceptance of food, good quality swallows, and praying for him to close his lips (although not required at this moment, I will get back to that).

Ayden has started to show significant improvement with that. He is a lot calmer during meals and starting to pick up on his swallowing. Last week, he was getting just a quarter of a spoonful of peaches per bite each meal. Now, he is at half and spoonful of peaches and strawberries with each meal. This improvement is wonderful, and I'm extremely happy about it. However, because of the slower progression, he will not get the opportunity to meet the goals I wanted him to complete by the time we leave Atlanta. Let me explain.

So, last week, we also had Ayden's goal meeting. Ayden has set goals with the behavior team, skills (the speech and language pathologist), and the nutrition team. Coming here, I had two separate sets of goals for Ayden. One set was realistic goals that he possibly could meet, and one set was utterly unrealistic to achieve by the end of this program but a great one for "one day." My unrealistic goals were for Ayden to eat steak and potatoes and drink Kool-Aid by the time we left. You are safe to assume that the team just laughed and told me, "No." My realistic goals were for Ayden to accept fluids by mouth AND to accept solid food by mouth. I didn't have a volume goal for any of that, and I just wanted him to do it. At the goal meeting, I was told that I wouldn't get all those goals met either. In a nutshell, the team agreed to work more on fluid intake. They felt it was important enough and an easier goal to meet versus the solid foods. It was explained that Ayden would not move on to solid foods while he is here during this program. They explained the difficulty of teaching the skills required for chewing and the time needed for it. He needs to have a certain comfort level with food that he currently does not have. Because of that, they could not agree to tackle solid feeds right now, but they did express they agreed Ayden should indeed come back for another 8–10-week treatment program to tackle textures and solid foods. They also officially extended his treatment to 10-weeks instead of the 8.

Ayden's goals for skills and nutrition are aligned with the same goals that are set by behavior. Skills will work on lip closure and proper swallowing to better help with drinking and strengthening his biting skills. Nutrition really can't set volume goals because Ayden has been so unpredictable with his progress. However, since we know he will be on a pureed diet when he leaves, she will be working with me and our family to prepare meals for him and learn how to determine how much he needs via g-tube and how much by mouth. It's a lot of work, but I'm ready for it.

Another thing we are starting to do is parent-train! Ayden has shown a pattern of regression following the weekends. Mondays and Tuesdays are tough for him. Wednesdays usually start the turning point, and then he rocks out on Thursday and Friday. To help combat this, I will begin training tomorrow and give Ayden his meals myself on the weekends. We hope this helps with my confidence, knowledge, and skills in providing Ayden his meals and reducing his negative behavior with the feeding team at the beginning of each week. These changes could also possibly speed up progress because he will now start getting therapeutic meals every day.

We also had to start looking at how things will look at home for us. How will we carry over these skills at home and school for him? I honestly don't know right now. I pray his school is willing to use the techniques and methods to work with him the way they are here. I know they all are not completely aligned with his school's way they do things, and I don't want him to show any regression from that. He has worked too hard while here to have it thrown out like that. I also hope we can get more of his caregivers other than myself and Antonio properly trained on feeding him. It is crazy how I was nervous as heck about coming here, and now I'm nervous about going home!

Ayden went and got a haircut for the first time since we've been here… he did horrible. Lol! I say that, but I'm still happy that he has a cut. We went to a shop called Ms. Lisa's Cuts for Kids. She was awesome! She tried her best with him. From the start, he put up the biggest fight, but he was sitting there all on his own and on his bottom by the end. His hair had plenty of mistakes, but I know she did what she could with what she was working with. We plan to go each week to get him better acclimated to the shop and here. Hopefully, that can carry over going home as well. I highly recommend anyone with a child who has difficulty getting their haircut to see her. I will include a copy of the link to her website below. I'm adding a picture of Ayden getting his hair cut. I promise, it looks way worse than what it was really like. AYDEN WAS NOT GETTING TORTURED!

https://mslisacutsforkids.com/set-up-an-appointment/

I'm not done finishing explaining EVERYTHING, but I wanted to get "something" posted. Thanks for all of your prayers and support!!! Please bear with me. I've also included pics of us playing around during our breaks, visiting the Atlanta's Zoo, Georgia's Aquarium, and discovering the local Publix, lol!