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Thursday, May 9, 2013

Taking the bad with the good

Raya had an amazing oral intake day yesterday. She drank half of a box of Splash before school, drank the other half of it (minus a couple swallows) at school, and then ate 2 servings of her Neocate "pudding". (a serving is 2.5oz of chocolate Neocate + 1 packet of honey Simply Thick) All together, that was a total of 400 calories. I'm very happy with that and I know her feeding therapist will be thrilled. I'm having a hard time getting too excited about it because it was all formula and no food, and it's hard for me to get too excited about 400 calories' worth of formula. That probably sounds really pessimistic but we won't be removing her feeding tube based on how much formula she can drink, so I don't really feel like it gets us any closer to our ultimate goal. That being said, I'm very happy with HOW it all happened yesterday.

When she woke up in the morning, she asked for a juice box and then drank half of it. Since she had done that well before school, I told her that if she would drink the rest of it while she was at school, she didn't have to wear her backpack to school. She was pretty happy about only having to take ONE backpack to school instead of two like usual. I think her teacher was happy about it too. :) I really didn't expect her to drink the rest of it. I thought she'd have a few sips and be done, but she drank all but about 15ml, which I had her finish when we got home. She and Kaida played for a while and then she asked me for pudding. I hadn't given her a pump feed yet because I was keeping her on her usual feed schedule and it wasn't time for feed #2 yet. (Side note, I found it interesting that she spaced the juice box out over about 3 hours. Her feeds normally take 2, so it makes me wonder if she was drinking it slowly based on comfort more so than distraction, which is what we normally feel is her reason for being slow with her oral intake.)

Since she asked for pudding, I made her some and told her that if she would eat all of it, she could stay unplugged for a little while longer. That made her happy, as usual, but I still didn't really expect her to eat all of it. In one sitting, she usually eats about 2 oz out of the 3.5 that it makes. This time she ate all of it and then ate a Dum-Dum since she did a good job eating her "lunch". After the Dum-Dum, she wanted another one. I told her that if she was still hungry, she could have more pudding and she asked for more. It took her about half an hour to eat the first bowl and then it probably took her another 45 minutes to eat the rest of it. That time she WAS being slow because she was distracted & kept getting down to play, but she still finished all of it.

Since she had eaten/drank 400 calories, I decided not to do a pump feed until later in the afternoon/evening. I think it was about 1:00 when she came and told me that she was still hungry and wanted another Dum-Dum. She was acting pretty crabby and I told her that if she was hungry, a Dum-Dum wouldn't help her feel better but formula would. I asked her if she was ready to get plugged in so she could get formula in her stomach and she said yes. I was proud of her for that because I know that she doesn't love being tethered to her backpack all the time but she recognized that she needed it. In hindsight, I think she may have been feeling extra full from the pudding since it doesn't empty as quickly as liquid and mistook that feeling for hunger, but whatever. She's associating sensations in her stomach with needing to eat so for now, that's good enough for me.

There was much to be proud of yesterday. The girls wanted to play a game so I told them that if they would fold the load of towels & washcloths, there would be enough room on the living room floor to play their game. Usually when I say things like that, it's met with wailing and gnashing of teeth but I must have caught them in the right mood because they got all excited about playing the game. Raya folded the washcloths and Kaida did the towels. I had to lay them all out for her and remind her how to do it but she folded all of them. She did the bath towels and hand towels and Raya did the washcloths.
 You can see the effects of weak core muscles in these 3 pictures. In the first one, Raya is sitting cross-legged. In the second one, she's kneeling. In the third one, she's back to W sitting. Evidently, the amount of time it takes for her trunk to fatigue is equivalent to a large stack of washcloths. Another interesting observation I made while she was folding washcloths was that she still does not reach across midline consistently. In the third picture, you can see how she's leaning and rotating to the right and tilting her head to the right (which is the opposite side as her torticollis). The reason she's leaning & rotating like that is so that she can fold the washcloth from the left side to the right side without her left arm ever crossing the midline of her body. This is one of the big goals we're working on in OT right now. Reaching across midline is difficult for her and requires a lot of conscious thought and effort, and she gets tired of it quickly. I didn't realize that's what she was doing until I looked at the pictures later, but now that I know that folding washcloths pushes her in that area, we'll make her do it more. :) The best part was that when they were all done, they happily put everything away where it belongs. That is my LEAST favorite part about doing laundry. They did great!

The evening brought another reminder that Raya's life is not "normal". (Neither is mine. I actually said out loud the other day, "Someone is coming over to my house to get a pair of arm restraints for her baby since I have an extra pair." Nothing even remotely normal about that statement!) She's been struggling with her emotions a bit since her overnight hospital stay last week. She gets very angry with me sometimes in a way that she didn't before that. I can't say that I blame her since I did help the nurses hold her down while they tried to put the impedance probe in her nose. I would have some pent up hostility towards me too if I was her.

What's even worse than that though, is that she's still having nightmares. Last night I was sitting at the table and she was sound asleep on the living room floor. (because we have a hard time getting her in her bed and we're choosing our battles) All of a sudden, she took a deep, sharp breath and started whimpering and talking gibberish in her sleep. Then without even fully waking up, she jumped up, leaned her head back, backed up against the couch, and started yelling and crying. The only thing I could pick out of what she said was, "I don't want to go in there!" I hurried over to her and held her and talked to her and she laid her head down on my shoulder and hugged my neck. She opened her eyes and looked at me for a few seconds and then I laid her back down on her blanket to change her diaper and she went back to sleep. It's sad and crappy to watch that happen to her, especially when there's really not much I can do about it. I can't stop her from having nightmares and I contributed to the reason she's having them.

Apparently she also has good dreams though. I woke up at 3:45 because she was standing next to me leaning over in my face chattering away happily. It took me a few seconds to process what was going on but she was talking about a cat taking her toy away and a boy taking it from the cat and giving it back to her. I patted her head and told her that was nice and she laid down next to me and we went back to sleep. This morning, I asked her about the cat and she started telling me the story again. Part of the way through it she said, "Oh, wait, there was a cat AND a dog! I didn't remember that dog." and laughed. It was so funny to listen to her chatter away about this dream she'd been having. I'm pretty sure she went to school today and told everybody that a cat stole her toy and then a boy took it away from the cat and gave it back to her. :)

Today hasn't been quite as good so far with oral intake. She drank 3 oz of a juice box before school and took the rest of it with her in a sippy cup. She drank about half of it at school and finished it when she got home, so it took about 3 1/2 hours for her to finish the Splash this time. She doesn't want any pudding, so I doubt that we'll be anywhere near 400 today but I'm still happy that she finished one box.

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