Day 12: Our Second Team Meeting

Today was MUCH improved! I never thought I would call it a good day because my child only hit me twice and we got up at 5:30 a.m when Naomi was awoken by wetting the bed from all that night time water. We gained back what was lost weight wise! Meals went pretty well today, she ate enough and drank enough at each one. Behaviors happened but I was able to get her back quickly at breakfast she started to throw a fit and slugged me once but I was able to bring her back with a game of tic tac toe where she got a turn for every sip of her diluted chocolate milk that she took. We were then able to get back into the meal and she finished her milk and ate reasonable amounts of all her foods. She was such a rock start that she not only got to dance with Dora, she got to be the unit secretary briefly after we returned to the floor. Morning snack kind of drug along but I think that had more to do with our very early morning than anything else. Lunch happened in the very busy cafeteria with the therapist watching but keeping out of Naomi's view. We hit a little glitch right away when Naomi decided she didn't want her garlic bread toasted. When I still asked her to take a bite she squished her bread all up into to a ball. Then when I continued to wait for her to try the bread she hit me and then rubbed the bread all up and down my arm so I took all her food away and told her I'd wait for her to be ready and steeled myself for an all out tantrum in a very busy cafeteria but instead of the fit I was expecting she pulled it together and asked for her food back. Yeah! After that for the most part lunch went well. When the people in the table behind us left the therapist was able to stealthily move into the table and sit down right behind Naomi. At one point Naomi had to go to the bathroom and as she got up the therapist quickly held a book up in front of her face like she was reading it, Naomi stopped and stared for a good 30 seconds before moving onto the bathroom. I am not sure if she caught onto it being the therapist or not but she never acknowledged it. She bumped her head on the door in the bathroom and cried pretty hard so I reduced my expectations when we got back and reduced my total volume expectations of the spaghetti (a typically preferred food) and we ended lunch on a great note. We then headed upstairs while Naomi hung out with a volunteer and I walked to the bank and was reminded of how much I miss Northern California weather. After I got back Naomi went to the playroom while I headed into our weekly team meeting, it felt a little less IEPesque and went really well. Basically Naomi is rocking this program. This week she has met 100% of her calorie goals and all of the that orally. She also met 100% of her fluid intake goals with 75% of that orally but we have seen great improvements with the fluid the last few days. She is also getting a great variety of foods, something they don't see too often in this program and I owe that to Stephanie, our awesome feeding therapist in San Francisco who worked with us for over a year and got Naomi from 95% tube dependent to 50%. I believe she could have gotten Naomi completely oral had we been able to do something more intense or started when she was younger. Naomi's variety ensures she is getting all her micro nutrients as well as the macro nutrients. Naomi and I hit all the goals for last week with the exception of the fluid intake of 5-6 ounces per meal with little prompting, she sometimes exceeds it and had one meal with only 5ml and almost always needs lots of prompting to drink. At the meeting they gave me a big cheer leading session about this weekend and that I am doing well, one of the therapists even asked me today when I am going back to school to be a therapist. Hmmm.... that's food for thought but not until my child is done throwing food at me and hitting me do I want to take on another's, granted I have so much more patience for other's children than I do my own. We also established the plan for next week. Starting tonight, Naomi will only get a 4 ounce bolus of water with her Miralax after she falls asleep. Starting on Monday we will work on taking that orally in one of her therapy sessions and discontinue all use of the g-tube! We will work on dad as a secondary feeder, so he can do mealtimes too and continue to work on fluids. We will also work on making all food choices something I can and will do at home so that they are realistic. We also discussed whether we want to take her tube out here and basically decided not yet. We'll let her GI at home make that decision and help us decide when we are ready. Afternoon snack can be described in one work AMAZING! Naomi and I headed down to the cafeteria and the therapist snuck in later. It was hard not to giggle as I watched her out of the corner of my eye try to peek around half walls at us without being seen. Naomi never noticed her and she went to town with her snack. She drank 9 OUNCES of her smoothie. I quit prompting her and she kept asking for more. She also ate some cheddar cheese and broccoli and cucumbers with ranch. I think that is a better more balanced snack than any of her siblings would eat in one sitting. After lunch she crashed with a movie and almost fell asleep. We met a great lady from the local Nazarene church who is helping us by doing our laundry tonight and bringing us a car seat to use tomorrow! Dinner was a bit hard but considering how tired she was and I didn't get hit but I did get my toe intentionally squished by her toes, I wore no food and for the most part she just stalled. I am calling it a success.

Here is the best part of today. Between meals Naomi drank 13 ounces of water! That is totally freaking awesome! It is worthy of a major celebrations! So all my happy dancers out there get up and dance! This is a major breakthrough! I'd shout right now but I hope that Naomi is asleep.

Day 12 17.1 kg and 4 ounces of water and one med through the g-tube!