Holy Cow, this is getting really hard!!!!!

Good afternoon Abby fans...please keep praying for us in here!!!! We are having a rough day!!!! Before I jump to today I am going to hopefully just sum up the basics of the program.

So, like I said in my previous post, its all about consistency. So if Abby decides she does not want to eat anymore of her meal and she says she's done and we say we have a few more bites, she sometimes will slide the rest of the food on the floor. Well for this reason, only a few bites are placed in front of her at a time. So when she "accidentally" spills, or slides, or throws them off the table, we tell her (calmly) that we are just going to get another bite to replace it. You HAVE to finish these 3 bites.....and sometimes it takes like 20 minutes for her to finish them....that is NO exaggeration!!! And they use all different kinds of techniques to help her finish. They introduce a book or a puzzle and let her turn a page once she takes a bite, or finishes chewing a bite, etc...they do a lot of redirecting. It's really about setting up expectations and teaching her that she needs to meet them.

So like I mentioned earlier, the first week is all about me observing and the therapist run the show as they get to know Abby, and what works for her. The second week they have me involved in the sessions and we co-treat. And the third week I do all the sessions while they sit back and observe, critique and encourage.

They also explained (and warned) us that the first week usually goes ok. The kids come in all excited, they are very willing to please. They like all the positive praise and cheering and so they for the most part will do what you ask even though it might take some time. Then around the second week mark they hit a wall. They are over it. They don't want to eat when and how much someone tells them to. (Remember that eating is hard for them...it's not a natural pleasure for them.) This is where the behavioral changes really start to take effect. Total defiance, screaming, crying, laying on the floor, tantrums....they said they have seen it all. But you keep going, pushing them and by the third week they have finally succumb to the fact that "ok, this is how it is, if I just do what they ask, finish this bite or take these last 5 sips of my drink, etc. then I am done and I get to get up and go play.

So every Friday afternoon, we meet with the entire feeding team and go over the week. And I am VERY HAPPY and PROUD to report that Abby had already hit 91% of her discharge goal. They wanted her to be eating/drinking around 1100 calories or so by the time she exits the program after three weeks and on her 5th day here, she was already at 91%!!!! They told us that they think she is eating more in the first week than any other kid they have ever had in the program!!!!!!!! WOW!!!!!!!!! THE POWER OF PRAYER......AMAZING!!!!! ( Thank you sooooo much for all of your prayers....clearly, they are working!!!!) But they also told us to not throw a party just yet. That we are still in the "honeymoon" stage and that next week might get ugly.

Well.....I think we are hitting our wall!!!!! This weekend she has been getting increasingly more difficult with every meal. More and more resistant to sitting in her chair, actually, she was arching out of her chair and wouldn't get off the floor. She is starting to throw her drink off the table followed by the food that is in front of her, spitting out her food, and this last meal at lunch, she actually started to cry. Big tears streaming down her face... she just looked at me with these big tears, her eyes saying to me, "mommy, I don't want to do this anymore...please don't make me, it's too hard.) Those tears almost broke my heart. Actually, as I am typing this right now, I have my own big tears streaming down my face. This is hard for her....really hard. This part I wasn't expecting....for this to be hard for MY heart. My sweet baby girl...she has fought so hard, for so long, for so many different things. Things that "normal" children take for granted. And now here I am, asking her to do it again. I know this is what she needs but this afternoon, knowing that, didn't make this ANY easier. I wasn't even sure how to handle the situation "correctly" because we haven't encountered this behavior with a therapist yet. All I wanted to do was scoop her up in my arms and say, ok baby...you don't have to, I love you...but I couldn't. IT WAS SOOO HARD!!!!!!!!!!!

So, PLEASE keep those prayers coming!!!! We could REALLY use them. I will of course keep you posted on the remaining meals for today and what the therapists have us do in these types of situations.....gosh, tommorrow morning can not come fast enough! (On the weekends none of the meals are with therapists, just mom, in our room.) I need some serious guidance, direction and support!

Thanks again for listening.

Love,

Kelly