Day 14: Last day of using the tube!

Today we got another day pass to leave for a few hours. We were going to go to a local Children's Museum called Pretend City but right as we were getting ready to leave, Naomi picked up a wooden stool she's been using at the sink and dropped it on her big toe and it really HURT. She cried for a good 15-20 minutes and has a black and blue toe and might lose her toe nail. We had to stick around for a bit and take care of her toe and since it happened at the hospital a report needed to be filled out and the resident had to come look at it. He basically said it looks bruised and she might lose the toe nail but other than ice and Tylenol there isn't much they can do. As soon as we got the Tylenol we were on our way and boy was I happy that daddy brought the stroller and Naomi's flip flops with him when he drove down yesterday. We headed to the Outlet Mall and had lunch at Johnny Rockets. Naomi didn't eat as much as usual but it was pretty distracting and she was worn out from crying so hard after smashing her toe. Besides she had a milk shake to drink so likely that made up for any lost calories with her meal. After lunch she wanted to do Bungee Jumping. Normally I would say no and I was a bit worried about her toe but this little girl has worked so hard that I relented and she had a blast jumping. Actually it was mostly the guy running it sling shotting her as she didn't weigh enough to really get it going. We then walked around for a little bit and headed down to the movie theater and watched Finding Nemo in 3D and had an afternoon snack of movie theater treats. Naomi ate a little, not great but she did drink most of an Icee and she almost fell asleep during the movie. We then headed back to the hospital to get back into the swing of things and ready for next week.

She ate a fabulous dinner but surprised me by only taking one lick of her ice cream cup. Her water intake is a little down today from what it has been only 5 ounces of water between meals but I'm not going to let that get me down and considering how good she smashed her toe I think it was truly fabulous, that could have seriously sent things downhill and it didn't.

Tonight was her her last time doing anything through the tube, we did 4 ounces of water with Miralax and instead of doing it while she was sleeping like we have since she's been here I decided to let her do right before bed so she could see it and know she has graduated to the next step. I didn't talk to the feeding team about this but I am the mom and sometimes it is easier to ask for forgiveness than permission. I probably would have talked to them though had the idea occurred to me on Friday as opposed to last night. Naomi hooked up her extension like the pro that she is, popped in the syringe and then poured the water through. The only help she got was the nurse holding everything steady since we didn't want to accidentally spill and not know how much of the medication was lost. She then got up and through the extension in the trash (it was more like an enthusiastic slam dunk) and we all cheered and she got high fives all around. We'll have to have a MUCH BIGGER celebration soon. Perhaps when the tube comes out.

Day 14 17.0 kg 4 ounces of water with Miralax through the tube.