First, let me say what an awesome patient Chloe is. I mean it is a bit ridiculous. Is it because she has been so used to being a patient in her short life (which is a sad thought, but maybe true...) or is it because she is so darn easy going? There is this vet kit my parents have at the house, and Chloe over and over again wants me to take her blood pressure, check her ears, check her reflexes... so you can imagine how much she loves being in the hospital right now. This gets done at least twice a day. Most kids in this program have to go through part of their therapy using the play doctor items to releave the anxiety for things as simple as getting their blood pressure taken. Nooo, not Chloe, she signs more after the nurse is done. Oh, and don't even get her near a hospital scale, the one she can step on to get her weight, exciting stuff let me tell you. Wish I felt that way every time I passed a scale, eager to jump on, hold on and wait for the digital number to pop up. So, my daughter loves being a patient, which I guess at this point, is a good thing!
At least being here has given me a break from feeding her (other than bottles), which is nice, I get to step back from the fight and take my gloves off. I fed her her first 3 meals, then the therapist have taken over from there. I don't even get to sit in the room, I am off in an observation room watching the action. For those of you interested in psychology, especially behavior psychology this is the place to see it in action. I can't help going back to my short stint as a dolphin trainer and now watching Chloe in that room I am hearing dolphin squeaks in my mind. Using the same psychology they use to train dolphins. The first two weeks are supposed to be assessments, assessments for toy preference, for eating preference, and more. Watching them hold a spoon in front of Chloe for a half an hour, and Chloe just staring at the wall or falling asleep. I can see how some parents are like, "What the___?". Which, I guess happens often. But all of this is gathering info for what the child refuses, how she refuses, what motivates her to eat, what motivates her not to eat to build the program that will help Chloe the most. So many kids with this problem, and so many variations of this problem. They ended all the data collection early and went straight to treatment because they weren't getting a lot of variations on their "graphs" because Chloe was so passive. I mean she would just refuse the food by turning away, staring them down, falling asleep, but no way was she gonna break! I knew I had observed this behavior in action...she for sure gets this behavior from her Dad!! :) Haha! (Slightly kidding my darling!) This determination of course has helped her in other areas in her life, but is not coming in handy at the moment.
Treatment has begun, they have introduced two new foods, so she is eating black beans with cheese, applesauce, pears, mac and cheese, carrots and green beans. And when I say eating, I really mean they are shoving it in the back of her mouth with a NUK brush. But she is not putting up much of a fight. At least she is swallowing, and not spitting out. She may gag on carrots and the green beans but is getting them down. She loves her therapists and is quite the flirt. With the way she is acting I think she thinks she is going to marry Kevin the therapist who feeds her half the time. She loves being with the other kids, there is time for her to play and interact with them and she is just a riot to watch. Tonight she was chasing and being chased by Max, a fellow patient who uses a walker. She would go hide behind the corner and jump out at him leaving him in giggle fits. Her and Max are quite the pair. Her obsession with spiders has continued and Max gave her two spider rings one night, sealing their friendship forever. She also loves playing cars and trains with Mason, and loves taking all of Cody's (our roommate) toys if she gets the chance. We get to play in the therapy garden when the weather is nice. And Chloe loves riding the buggy that fits all the kids so they can scoot them all over the building. She loves music therapy and one night we had music in the lobby and she kept rushing the stage. We have been able to get to the aquarium, where Chloe's favorite thing was the jellyfish, which she continually called spiders, but what the heck. They keep us quite busy day and night which is good.
The therapists, such as the OT, PT and Speech are amazing and amazing to watch. They basically solely work with kids and this problem so they know what they are doing and get right to it.
One thing I can say for sure, for sure is I AM SO GLAD WE DID NOT GET THAT FEEDING TUBE! Period, end of story, have my reasons and there are a few. Of course if she hadn't improved, we would have had to have gotten it, but thank goodness she improved and gained weight when she needed it. It adds a whole other set of problems for these kids and I think, makes this process even harder.
Tomorrow is the big meeting where we get to meet all the specialist working with her and find out the big plan, the goals, where we are and where we are going. Here's hoping Chloe will be cured by next week!
LASTLY, THANK GOODNESS FOR MY PARENTS!!! I would not have been able to get through this experience, even these two weeks and kept my sanity without them. They have driven us out here, given me breaks, a chance to get away from the hospital, helped me get us adjusted to the new schedule and been a great all around support. Chloe and I are so lucky to have them here. It is nice to know I can take breaks and she is with someone she loves (I would say probably more than Evan and I...)is comfortable with, and sees as a big playmate, which she does with my parents. It is true that I might have had to hold Nana down a few times from keeping her from running into the feeding room grabbing Chloe and getting as far away as possible from these mean, mean therapists... but we have all stuck in there. Thank you and I love you!
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