Okay, good people. I'm back. I've had LOTS technical difficulties lately, but thanks to Antonio, that's all resolved now (Thanks Babe!). Anyway, I must get you all caught up on Ayden. This post will focus on two weeks. The reason I put them together is that they pretty much were the same thing. He literally did the same thing for two weeks. One week was short because of Labor Day and the second week was just a continuance of the first. During these two weeks, Ayden had become stable enough to start building on his variety of food intake. I believe I've mentioned before that the program likes to send home clients eating at least 16 foods, four from each food group. At the start of the week, Ayden was at 2. As of today, Ayden is up to 8!
This is huge! Ayden has never really consumed anything other than applesauce and pudding. Now he's eating broccoli, carrots, peanut butter and jelly sandwiches, yogurt (of course), oatmeal, and fries (with ketchup). He is still taking his peaches and strawberries as well. They introduced a new food every two days. They wanted to take their time to ensure he tolerated the new food well. Ayden has shown that the slightest change freaks him out, so everything is done slowly to deter that negative behavior. Introducing foods went better than anyone expected. That has been the easiest thing I think we've done since being here.
Every time something has changed, Ayden has needed extra time to accept it. For instance, the different spoons introduced to him freaked him out. He had an issue with the placement of the utensils in his mouth, the NUK brush, and the dry spoon to rice size volume of food… you name it. When the techs introduced the different foods to him, he acted like he didn't even notice the change! It was crazy! Everyone wanted to "watch" how he would respond to different things. I guess we were all expecting the worst, or at least for him to put on a show only to see that he didn't. I think you can say that no show was the best kind of show for this situation. We were all so happy.
The procedure went like this: for the first meal of the day, the familiar foods to Ayden started like usual (half a spoonful on a NUK brush). So, they would scoop the food onto the brush and then transfer it onto the NUK brush. They do this to ensure that he gets the same consistent amount with each bite. Of every five bites, the 3rd bite would be a quarter of the spoonful amount of the new food. This process would go on for the entire meal. The next meal would go to a half spoonful. The next meal would go to regular rotations of the bite (no longer every 3rd bite out of 5). They would then "generalize" things to me, which means they would bring me in to feed Ayden in the treatment room and receive any necessary guidance. After that, I would do a meal at our Air BNB and via Web-ex (just another form of telemed). After another stable meal in the clinic, we move on to the next food item.
Every time wasn't perfect. There were still days that Ayden was NOT feeling it and did not want to "act" right, lol. If that happened, it would throw off our schedule and push us back. He has to remain "stable" without any adverse behavior to move on. We don't believe Ayden's setbacks ever had anything to do with the food itself, but with the fact that he just didn't want to "take" the bite at the time, or he didn't want to do his hand-over-hand hold that we always do. Yes, we still do it because Ayden will still swat away anything you bring to his face.
The other major thing that I've had to learn this week is making pureed foods. I did NOT know what all went into it. It is one of the things that are not hard but tedious. Trying to make sure that you have all of the excess water out of different food or knowing the right amount of moisture or fluids into foods to get the correct consistency can be frustrating at times. I told myself that I would NOT allow or have Ayden eat something that I wouldn't eat myself… that's been hard. I have tasted everything that he has, but it has been challenging. So far, everything is fine when it comes to the overall flavor, but I can't get with the texture. Pureed French fries and peanut butter and jelly sandwiches do not tickle my fancy; however, they both still taste the same.
I went out and got the big fancy blender and absolutely hated it (sorry, Antonio). The blender itself is fine, but I've learned that it really wasn't what I needed. I needed something on a much smaller scale. The portions sizes that I need to make are too small to fit into the big blender. So much food goes to waste because it is still eating a minimal amount, and it is only good for three days after being made. I've had to come up with a system of organizing and labeling the food. The more I make, the more complicated it is. I'm not complaining at all, but I know I will have to deal with my OCD husband, who may not like how it looks, lol.
So, these last two weeks have shown sooooooo much growth! We are so excited about the way he has handled the introduction to all of these foods. Next week, we plan to try several different things. We plan to try cup drinking, switching over to a spoon, and working on textures. With only a few weeks left, I'm nervous about this but still very excited. He has come so far! I'll keep you updated. :-)
The picture is just an example of what Ayden started with at the beginning of week 5. Everything is weighed before and after the meal to determined how much he successfully consumed. He has definitely added to his menu options, and his intake, lol!
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