Day Five

Taking a dolphin ride at Pen Park.

Happy Friday. We survived our first week of feeding school. After a trying day yesterday, we had a much better evening. Olive took a three hour nap and woke up a new woman. We ended up going to a great park and made a Target run, being sure to stop to look at the bikes there since that is Olive's favorite thing to see. Snack on our own yesterday afternoon went ok. It was a struggle to get her to take three ounces of milk since she has figured out how to blow bubbles. I realize that's a totally normal thing developmentally, but it is hard to remain patient when you're having a battle over bubbles with a two year old on every single sip of milk.  She did tastes of hummus and goat cheese as well as bites of cheetos.

Dinner on our own went slightly better because in the car after Target she asked for milk and drank three ounces of milk on her own from her little bottle while we were driving back to our hotel. So that was a relief that she already had those calories in, which meant there wasn't pressure to get her to drink as much with dinner. She enjoyed a few big licks of chive cream cheese and did a great job of working on having fruit snacks in her mouth. After she fell asleep we surreptitiously gave her two ounces of water in her tube too because hydration is key in avoiding constipation, which is a common problem when trying to wean tube feeds.

The legos in the car are two people going to the coffee shop.

We've been adjusting what we've been giving Olive by tube based on what she is taking orally. Polly keeps track of everything Olive gets orally and then directs us what to give her as a supplement in her tube. We've really been tubing very little, with less than half of her normal breakfast and lunch with her dinner amount remaining the same. It's been odd to not tube feed Olive really between the hours of 8-4, but her weight was up today so she seems to be getting adequate calories thus far. The ironic part is that both Dain and I agree that tube feeding is actually way easier than what we are doing...keeping track of Olive's hydration, nutrition, oral intake and weight while cutting tube feeds and working 5 times a day to get Olive to eat with her mouth and then still tube feeding some amount. It's exhausting. But after 17 sessions this week with Polly, we are proud of Olive's progress.

Today Polly had a conflict in the morning so we did breakfast on our own at the hotel. It was nice to not have to wake Olive up and rush to UVA. Instead we let Olive sleep until she naturally woke up and then did our routine of tubing water and two ounces of her typical breakfast with a half dose of her medicine and then sitting her down at the table to drink milk and work on eating. She managed to take three ounces of milk despite the bubble battle and did a good job licking Nutella and some yogurt. She also worked again on biting pieces of fruit loops.  Since Crystal, the preschool teacher, had a work day we didn't need to be at UVA until 10:30. We got there a little early to let Olive play though because she seriously loves the play area. She goes on and on about the train table and loves the legos making towers and castles and parking lots.

Licking all the flavor off of a pretzel cracker.

Snack went so much better than yesterday. Olive was cooperative and cheerful. She took another three ounces of milk and surprised us with taking small bites of Ritz crackers. Her instinct is still to get the crumbs out of her mouth as fast as she can, but with some prodding she will try to chew and swallow some pieces. It just doesn't come easy or naturally for her. She also actually enjoyed some key lime yogurt, wanting to take more tastes without being instructed to. Polly told us today that Olive's oral skills are about at the level of a nine month old so we obviously have a lot of work to do with her skill set and confidence in eating. She also doesn't really understand that the food she puts in her mouth goes to her tummy. Polly keeps telling her this and that it makes her belly feel better, which prompts Olive to lift up her shirt and look at her tummy as if she is going to be able to see the food going in like she can with her tube food. She in fact calls her tube fed food "tummy food" so now she just needs to learn that food in her mouth is tummy food too.

After snack we took a nice walk around campus because unfortunately Ms. Jen was out today. Olive was disappointed by this news, but that didn't stop her from talking about Ms. Jen throughout the day. It was actually nice to get out and have time to walk around campus. Olive asked for milk when we stopped at a coffee shop, and she drank another nearly three ounces out of her small bottle there and on our walk. It is nice to see her asking for milk on her own as she is obviously starting to make some kind of connection about thirst and/or hunger. Next on the agenda was lunch. Olive didn't drink too much milk since she had consumed so much on our walk, but she did a great job exploring food. She had some good licks of garlic cheese spread and guacamole along with Ritz crackers. Polly is trying to get Olive to use her back molars to eat as Olive's instinct is to bite with her front teeth, pushing the food into the middle of her tongue where she doesn't know how to move it around. For lunch Olive practiced chewing on her molars with tootsie rolls and slim jims.

Stepping into a slim jim.

After lunch we went to the day suite to give Olive a nap. She took another nearly three ounces before nap, and we gave her another half dose of her appetite stimulant medicine. She took about an hour long nap before she heard kids yelling and sat up asking to go play at the train table. Ironically today we could have let her sleep longer as Polly had a freer afternoon schedule, but it all worked with Olive having a chance to play with the toys again. She did a decent job at snack too. She took more bites of crackers and meltable popcorn, and she is really close to closing her mouth around a spoon full of food and taking a bite. She can do it with an empty spoon, but with food on it, she gets nervous. We'll continue to try to work on that small step in hopes that she can start to take more volume by mouth.

Then we made a game plan for the weekend. It's a little daunting to be on our own, but Polly will also be available by phone. She instructed us to try and replicate what we've been doing this past week and to write down everything Olive gets by mouth and tube. The hard part is that we will have to make the judgment call on how much to tube feed in addition to whatever she takes, and she will be weighed again on Monday. The weight checks remain a constant because at less than the first percentile for weight Olive really doesn't have too much weight to lose. So there needs to be a balance between letting her feel hunger and still providing her with enough calories that she at least can sustain herself. It's complicated, but we are thankful to be working with such an experienced therapist like Polly. She really knows her stuff and is just incredible with Olive. So we will give it our best try this weekend, knowing that it may be a struggle at times.

Enjoying her milk at band practice.

After snack, we came back to the hotel for a short break and we tubed a little over half of Olive's normal tube meal. Then we hit the crowded town. It is homecoming weekend at UVA, and UNC is in town for the football game tomorrow. So it is basically a traffic nightmare around here. We kind of knew this, but it didn't stop us from going with our planned activity. Being the tourist I am, I have been reading the events on the Charlottesville tourism website, and I knew our Friday night activity the moment I read it. Marching band practice? Obviously. Olive loves marching bands. We waded through the traffic jams and ended up parking a good distance away because of the craziness. But we hoofed it over to the practice field and had a great time watching the band practice. Olive loved it. We did too. We brought a blanket and had a snack, and it was a near perfect family Friday night. They don't really compare to the UW band of course, but it was a fun time. Olive even drank nearly four ounces of milk while we there and tried some hummus and fruit snacks. We couldn't stay for all of it, but it was worth the hassle of getting there and back to see Olive's reaction to it. She of course wanted more.

Clutching her fruit snacks as the band plays on.

We grabbed dinner for ourselves and came back to the hotel to sit down to dinner with Olive. She took another ounce and a half of milk, and she tasted some pretzel crackers and onion dip. Then she was pretty much ready for bed after a long day. We aren't quite sure what our plans will be for the weekend. We may venture to the farmers' market tomorrow or another orchard, but it'll be nice to have two days without a rigid schedule. And thankfully Olive was back to her normal self today. We may try a three quarter dose of her medicine tomorrow in hopes that her body may be more used to it now and will tolerate it without the wild side effects from yesterday.  But Polly mentioned today that she didn't see Olive on it for more than a month or two. Overall today was a redeeming day after yesterday, and we always remind ourselves that it always gets better. Sometimes it just gets worse for a little bit before the better part comes.