So Kaydence, my mother, and I have been here in Baltimore for a week. A very, very long week. I am afraid this may be the longest eight weeks of my life. I have ventured down to the business center in our condo building to locate the computer on which I am typing. I have to be super mindful to log off of everything when I am done! I just can't blog from my phone anymore. It's too hard! But probably not as hard as eating has been for Kaydence.
I'll attempt to give a good description of what she is tolerating thus far. The beginning of the week was the KKI staff evaluating and testing her. The first three meals I fed her. I would feed her what she normally eats at home (peanut butter mixed with mashed banana) and then attempt to feed her what she does not prefer, like strawberry applesauce. Therapists were evaluating her BEHAVIOR during this time. This whole program is actually behavioral therapy mixed with occupational therapy and speech therapy, the majority of it being behavioral. After the first three meals, the therapists took over and I have since been watching behind a mirrored window in essentially a closet space that I share with the parent of the kid next door and other therapists. I really need to lose a few pounds to fit in there better - hahaha. They began with toy preference tests based on what I said she likes to play with. They take data on each and every movement she makes. Once they figured out her favorite toy, they then worked to figure out why she will not eat. What is Kaydence's true motivation for her behavior? Based on data from several meals they concluded that she simply wants to "escape the bite." Simple, yet not so simple.
So Thursday, actual treatment began. They do not allow her to escape the bite. She will throw her head around and get mad, or cover her mouth, or giggle and throw around her head. She is actually kind of funny to watch, but those ladies are stone faced. They have one method where they keep the spoon stationary until she finally eats it, or they put the spoon on her lips and do their best to follow her tiny lips from side to side. I would say it is as to eating as bull riding is to rodeo: kind of wild as you go round and round, but you have to stay on for the duration. She will take the bite fairly quickly. The meals so far have been oatmeal textured food except for that darned strawberry applesauce. She has eaten ground up pancakes, chicken nuggets, green beans, oatmeal, and the applesauce. Fifteen bites each meal. There is actually a time limit to the meals most of the meals, but it's dependent on the data they want to gather and the methodology. She did well all meals, but Friday she was just tired and cried more.
In between her feeding sessions she has time in the playroom with the other kids and supervising therapists and she has OT, Speech and PT. Each day is a little different. We get a new schedule each morning as we enter the playroom. The playroom has organized play and activities like a daycare center, but the workers are therapists. After lunch, everyone has time for a nap. Unfortunately Kaydence does not nap. We have a place to nap, which is cold and dark and perfect for sleeping, and they even gave us pillows and blankets, but as soon as I turn off the lights, it's like a raccoon comes out and attacks me. She laughs and crawls all over me, especially my head, and I come out looking like I've been attacked. It wasn't worth the fight to me, so we found a comfortable chair in a kind-of-quiet spot to sit quietly and read a book. It's downtime enough.
You'd think she would nap because she keeps waking up at two to four in the morning. You have not experienced terror until you are dreaming and all of the sudden there is a pair of eyes right at your eyes in the middle of the night. Usually followed by a squeal and a giggle. Not cool Kaydence, not cool.
Compared to the other kids in the program, her tears this past week have been few. This is their control of something and it's hard for these guys to give up that control when they don't have much to begin with. There are others who are physically disabled, or non-verbal, or have other stuff going on - obviously, or we wouldn't all be here for a feeding program. I am so thankful for the opportunity to be here. I am equally thankful for people who are helping with my family back home, for the people who are praying, and for the friends who have actually donated monetarily to us to help make this a little easier financially (we have never asked, but some folks have sure blessed us).
I'll continue to claim this leg of our journey as a victory in Christ, for God is with us. He sends us affirmation again and again. All I can say is here I am, God. Here is my daughter. She is yours and we are created for YOUR glory. Your will be done. Amen.
I'll attempt to give a good description of what she is tolerating thus far. The beginning of the week was the KKI staff evaluating and testing her. The first three meals I fed her. I would feed her what she normally eats at home (peanut butter mixed with mashed banana) and then attempt to feed her what she does not prefer, like strawberry applesauce. Therapists were evaluating her BEHAVIOR during this time. This whole program is actually behavioral therapy mixed with occupational therapy and speech therapy, the majority of it being behavioral. After the first three meals, the therapists took over and I have since been watching behind a mirrored window in essentially a closet space that I share with the parent of the kid next door and other therapists. I really need to lose a few pounds to fit in there better - hahaha. They began with toy preference tests based on what I said she likes to play with. They take data on each and every movement she makes. Once they figured out her favorite toy, they then worked to figure out why she will not eat. What is Kaydence's true motivation for her behavior? Based on data from several meals they concluded that she simply wants to "escape the bite." Simple, yet not so simple.
So Thursday, actual treatment began. They do not allow her to escape the bite. She will throw her head around and get mad, or cover her mouth, or giggle and throw around her head. She is actually kind of funny to watch, but those ladies are stone faced. They have one method where they keep the spoon stationary until she finally eats it, or they put the spoon on her lips and do their best to follow her tiny lips from side to side. I would say it is as to eating as bull riding is to rodeo: kind of wild as you go round and round, but you have to stay on for the duration. She will take the bite fairly quickly. The meals so far have been oatmeal textured food except for that darned strawberry applesauce. She has eaten ground up pancakes, chicken nuggets, green beans, oatmeal, and the applesauce. Fifteen bites each meal. There is actually a time limit to the meals most of the meals, but it's dependent on the data they want to gather and the methodology. She did well all meals, but Friday she was just tired and cried more.
In between her feeding sessions she has time in the playroom with the other kids and supervising therapists and she has OT, Speech and PT. Each day is a little different. We get a new schedule each morning as we enter the playroom. The playroom has organized play and activities like a daycare center, but the workers are therapists. After lunch, everyone has time for a nap. Unfortunately Kaydence does not nap. We have a place to nap, which is cold and dark and perfect for sleeping, and they even gave us pillows and blankets, but as soon as I turn off the lights, it's like a raccoon comes out and attacks me. She laughs and crawls all over me, especially my head, and I come out looking like I've been attacked. It wasn't worth the fight to me, so we found a comfortable chair in a kind-of-quiet spot to sit quietly and read a book. It's downtime enough.
You'd think she would nap because she keeps waking up at two to four in the morning. You have not experienced terror until you are dreaming and all of the sudden there is a pair of eyes right at your eyes in the middle of the night. Usually followed by a squeal and a giggle. Not cool Kaydence, not cool.
Compared to the other kids in the program, her tears this past week have been few. This is their control of something and it's hard for these guys to give up that control when they don't have much to begin with. There are others who are physically disabled, or non-verbal, or have other stuff going on - obviously, or we wouldn't all be here for a feeding program. I am so thankful for the opportunity to be here. I am equally thankful for people who are helping with my family back home, for the people who are praying, and for the friends who have actually donated monetarily to us to help make this a little easier financially (we have never asked, but some folks have sure blessed us).
I'll continue to claim this leg of our journey as a victory in Christ, for God is with us. He sends us affirmation again and again. All I can say is here I am, God. Here is my daughter. She is yours and we are created for YOUR glory. Your will be done. Amen.
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