Day 11: The Wall

One of the things that the team talks about and tells each parent about before they come here is "The Wall." It is that point when the child throws everything they've got at you, as one last ditch effort to make sure you really mean business. We were actually beginning to think that Naomi wasn't going to hit it. Then we had the mess at dinner last night. Naomi woke in the middle of the night while we were tubing her water and she was a little miffed that we had told a lie of omission and let her think she wasn't being tubefed. We talked a little while and she finally went back to sleep but wanted me to know she wasn't pleased. We woke up this morning and Naomi had a bit of a weight loss, it was minimal, .2kg and still above her admition weight. It was still hard to accept, I made her get on the scale three times just to make sure it was right. There is so much emotion tied up in Naomi's weight. Some of our very best and worst days have all been related to Naomi's weight. Breakfast today was good, she noticed we diluted her milk but we powered through that, tried some cold cereal with milk and ate half a breakfast sandwich so I thought we were past the wall.

I laughed when I saw this written on Naomi's cup, since she has rarely in her life expressed hunger.
However their is nothing funny about people going hungry because of lack of food or inability to eat.

Morning snack involved at lot of stalling, laying down in her chair, putting her feet on the table, but she was able to recover from it because she was going to get to run around with the Child Life staff and she was really looking forward to it. Lunch, well, it wasn't fun, it really, really wasn't fun. She tried a minuscule amount of tomato soup, which was great but then we has a fit about watermelon. First she rubbed the watermelon all up and down her arms, then she said it tasted like her fingers and she didn't want to eat it. I told her she needed to eat it to get to check off her box and therefore play after lunch. She yelled at me, she ignored my requests, she hit me, she squeezed the watermelon into a pulp and very intentionally dropped some on my feet (so wishing I hadn't been wearing flip flops), she told me "I don't want to eat with you anymore," she hit me and drew on me with a crayon, she drew on the table with a crayon and then the therapist came into the room and "rescued" us. She pulled out a book and she and I looked at the book together and talked about it but Naomi couldn't look at it until she ate her watermelon pulp that she had made. She was also given a very clear time frame, to finish eating. She barely made it and had a short play time in the ball pit. So the meal was good because it ended on a positive.

She liked the customized smoothie that her awesome dietary tech made for her.

This is how she spent the better part of snack, it is awfully hard to eat like that.

After lunch we headed back upstairs and needed to do some of her school work, I made the mistake of telling her I needed to go to the bank when we finished. She wailed at the thought of me leaving and very little school work got done and I didn't leave, I couldn't do it to her. Lunch had been so fraught with emotion that I couldn't leave her crying. I let her watch a movie and then I got to talk to the dietitian and then the social worker. I shed a few tears too. Afternoon snack I was given the choice of going back into the speech room where lunch had transpired or challenging Naomi with a distracting environment but the therapist in view. Every part of my being said challenging environment, I can't take more of lunch time but we are here to deal with these challenges so we went back to the speech room. I almost broke down and cried while the therapist gave me a pep talk before abandoning us (I know she was just next door watching but I felt like a toddler whose mom goes to the bathroom and shuts the dreaded door). We sat down and Naomi started unloading the food from our bag, she saw we had a hard boiled egg and asked to have it first. I was a little anxious as although hard boiled eggs aren't new, we don't have an egg slicer here so they aren't just like home and she'd had trouble with them in a previous meal. She peeled the egg and then after a bit of a tug o war, we sliced it together. Then she announced we're going to eat three bites of the white part and then three bites of the yellow. HA! I was only going to ask for one bite of yolk but I certainly wasn't going to tell her. We both got our pieces of egg and she went to town with the white and had just a tiny bit of stalling with the yolk, we then proceeded to celery, her all time favorite, right up there with chocolate. After a few pieces of celery I introduced egg salad. Not happy, no way was she going to dip her precious celery in that stuff, I offered a cracker to dip and she refused and quickly ate the cracker, I got another cracker and she waved it over the egg salad and said she had dipped it. She then started violently shaking her head and yelling NO at me, she proceeded with this for awhile, I threatened to take the cracker away but never followed through but eventually she did stop barely dipped the cracker in the egg salad, I was so done that I called it a win and gave it up. We drank some orange juice and water, ate some more celery and one last bite of egg white and then headed out for a trike ride.

Naomi was exhausted after snack and and the bike ride and vegged out in front of a movie while I talked with our afternoon feeding therapist about the session and this weekend. Talking with her was refreshing as she kept reassuring me I was doing a good job and Naomi's behaviors were nothing they hadn't seen before (other than the defiant broccoli eating yesterday), and that for the weekend when we have to go eat in public that is okay to reduce expectations with new challenges, if we're eating in a very distracting environment for the first time, I don't need to expect quite the same volume and certainly shouldn't present a new food BUT we need to be able to eat in places besides our home and they want us to have that confidence that we can do it. Naomi has ate in restaurants before so this is nothing new but there was never ANY expectation other than to sit and the table and eat a few bites or more IF she wanted to. The bar has been raised and I'm hoping we'll both meet it in a good way.

Dinner went surprisingly well but it was all foods she's seen before and only one she doesn't really prefer. After dinner Naomi went to the playroom and hung out with the CHOC radio folks as they were broadcasting from the playroom on our floor. Naomi sang Twinkle Twinkle Little Star on air and did an interview and had a great time with the DJ. At the end of the night she got to request the last song and she chose "So What" by Pink but sung by the Chippettes. Her favorite lyrics from that song are "I want to get in trouble, I want to start a fight." Hoping she lets go of all those feelings in her dreams tonight. Bedtime was tough but once she finally got in bed she was asleep faster than she has been any night since we've been here, I guess climbing that wall in exhausting.

Day 11.....16.9 kg... 12 ounce of water and one medication through the g-tube.