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Sunday, October 20, 2013

Updates from the week

It's been a whole week since I updated and there is much to tell. I should start by finishing the story from last Sunday night. Saturday night, she had woken up late at night with a fever and wanting her stomach drained. The fever only lasted a couple hours and she seemed fine Sunday morning so I wasn't sure what to make of it but thought maybe it was some strange allergic reaction to the cheese she had gotten into the day before.

Sunday evening, she went to bed and seemed fine. She had eaten a little less than half of a peach at dinner and seemed pretty normal all evening. She came charging down the hallway dragging her usual armload of stuff (2 blankets, a few stuffed animals, feeding pump backpack, etc.) with a frown on her squinty-eyed face and I could tell she didn't feel great. She climbed up on the couch and I asked her if her stomach hurt. She said yes so I asked if she wanted it drained again and she said yes. I plugged in a Farrell bag and got maybe an ounce of formula, so it didn't really help much. I hung the Farrell on the IV pole just to give her some venting. She had a fever again. She fell asleep so I went in the other room to finish what I had been working on and then I heard her puking. (just like old times...) As much as I hated the carpet in the living room of our house that we lived in back in her frequent vomiting days, I have to admit that it was much easier to clean puke out of. I was not a fan of picking chunks of undigested peaches out of the fluffy shag carpet that we have in this house. I love the carpet but it's really not puke-friendly. I cleaned everything up, threw a towel down on the couch and the floor next to the couch, gave her one of her favorite blue puke bags, and started running Pedialyte into her. I swear, running Pedialyte into a sick kid like that makes such a huge difference in how their body fights off the virus. (which is why stomach bugs always make me wish my other kids had G tubes)

I started a load of laundry and finally got her settled in on the couch around midnight and started a long night of sharing a couch with a girl who is getting too big to share a couch with but who I didn't dare leave there by herself. Somehow the kids always end up with the big couch.

She felt a lot better on Monday, as demonstrated by this lovely picture:
but just to be on the safe side, I fed her half formula & half pedialyte for the day. The kids had been off on fall break the week before and they had Monday off too. It was a very long day full of children fighting with each other. We did play at the park for a while though since the weather was nice. Tuesday was the blessed day that the older kids went back to school. Raya and I stayed home all day and I canned some chicken and repeated the same answers to the following 2 questions repeatedly all day long:
Raya: What day is it?
Me: Tuesday
Raya: Is Courtney coming? {respite provider}
Me: No, but she'll be here tomorrow.
(followed by pouty face from Raya)

 She got pretty crabby about the fact that we had run out of potato chips (holy schmoly, how did I forget to buy chips??) but I pacified her by making her some coconut milk ice cream in the Vitamix. She was a big fan. It was tasty, I have to say. I think it might have a better texture with the canned coconut milk than the refrigerated "healthy" stuff that I used but it still worked just fine.

 She ate the whole bowl, which thanks to the low-calorie refrigerated coconut milk probably had about 20 calories but whatever, it made her happy.

She seemed like she was completely over whatever she'd had by Tuesday and she was very much ready to go back to school on Wednesday. I had given her an extra day off of her Periactin so she didn't start it on Tuesday like she had the week before. I gave her the first dose of the week on Wednesday before school. When I dropped her off, I warned her teacher that she was on a new med and could be a bit grumpy or drowsy. What I did not expect, however, was to go back to pick her up at 11:00 and find that she had been asleep since 9:45. They said she fell asleep at the table while they were eating their snack, opened her eyes a little when they went back to their classroom, but then was out cold again and stayed that way the rest of the time she was there. They had her laying on a nap mat in the back of the classroom. When I was walking in, I heard one of her little classmates tell his mom, "Raya's asleep!" And sure enough, she was completely and totally out.
I signed her out and then stood and stared at her for a minute, trying to figure out how I was going to pick her up and carry her and both of her backpacks ALLLLLLLL the way out to the car. I thought she'd wake up when I picked her up but she didn't. I thought she'd wake up when I started to buckle her into her carseat (since she insists on doing that herself most of the time) but she didn't. I thought she'd wake up on the drive home but she didn't.
(don't worry, I took this while I was stopped at a red light and clearly, I was not looking when I took it) I thought she'd wake up when I got her out of the car but she didn't.

I thought for SURE she'd wake up when I took her shoes off of her and laid her on the couch, but she stayed asleep. She slept, and slept, and slept. Her respite provider came at 11:30 and Raya was asleep still. I ran some errands and when I got back, she was STILL asleep. The big kids got out of school early for parent teacher conferences and when they got home around 1:15, she was STILLLLLL asleep.

 I couldn't believe she was sleeping for so long. I started to worry that something was wrong with her or that I had accidentally overdosed her (even thought I had double checked the dose before I gave it to her and made sure it was right). Finally at about 2:00, she woke up. She was bummed that she only had half an hour to play with her respite provider but I was glad she had gotten such a good nap.

Unfortunately when she woke up, I could tell that she was probably coming down with something else. She sounded a little congested and coughed a few times here and there. That night, she started to sound pretty croupy and she stayed that way all weekend. Aside from having to drag her along to parent teacher conferences on Thursday, we laid low the rest of the week and didn't go anywhere. She had a rough night Thursday night (meaning she and I BOTH had a rough night) so I texted her therapists Friday morning and canceled her appointments and emailed her teacher to let her know Raya wouldn't be at school that day and we laid on the couch all morning. Well, after I gave her a bath and stripped all the bedding off of my bed and cleaned the pee off the floor next to my bed. She had gotten in bed with us and yes, she had a diaper on but she was getting extra fluids all night and yeah, diapers can only hold so much. She slid off my bed that morning and peed and it all just came dribbling out of the diaper onto the pillow that was on the floor. TMI, totally gross, but yeah, that's life. :) She had a nice bath and snuggled up on the couch to watch some PBS shows on Netflix while I took a nap. (which was interrupted every 20 minutes when she'd ask for another episode)


It felt nice to have the day off but we'll be making up for it this week with several extra appointments, including GI. I'm hoping they've either made progress on the auth they were trying to get or else will agree to go the other route that we've been talking about but we'll see on Tuesday.

She's still been a little croupy-sounding at night the last couple of nights but she's running around like her normal self (not that that's a very good indicator of whether or not she's sick...) and she says she feels good. The kids all played outside for a while this afternoon while I made dinner. She was acting silly all the way through dinner (in an aggravating way, not in a cute way) but we did get her to eat half of a medium-ish red potato and about a teaspoon of whole black beans. Her total for the day today was about 240 calories. Pretty good, especially since I forgot to give her Periactin this morning. The virus she's had this week kind of kept her from wanting to eat so even with Periactin on board, she hasn't eaten much all week. I thought about not giving it to her this week since she was sick but I decided to do it anyway just to keep things consistent. The fact that it's an antihistamine was kind of an added bonus that I figured she might as well have. Today and tomorrow will be her days off and she'll start again on Tuesday just in time for her busy day of 3 appointments, which should be super fun. I told her teacher we wouldn't start a Periactin cycle on a school day again since it seems to hit her harder on the first day (as evidenced by the 4 1/2 hour nap on Wednesday) so we'll start Tuesday instead. I'm still not willing to risk the insomnia that it gave her before when we gave it to her at night!

After dinner, everybody got showers and Daddy trimmed nails. She wanted to do it like the big kids so they started out like this:
but they only got through a toe or two before they switched to something she could handle a bit better (and thankfully Daddy has good aim and didn't cut off anything important while she was wiggling around trying to balance! :)

Now it's time to go see if she's finished digesting her dinner and plug her in for her night feeds!

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