Skip to main content

Christmas with a sick kiddo

We had a great day on Christmas Eve. I fixed our 2nd annual fancy-schmantsy Christmas Eve breakfast, including buckwheat pancakes for Raya. She was pretty excited about her pancakes.

When breakfast was all cleared up and the house was nice and clean, we loaded up the car and drove to Donny's parents' house about an hour away. It was a bright, sunny, beautiful day, which kind of ticked Raya off while we were driving because she doesn't do well with bright light in her face. She fell asleep pretty quickly though and had a nice nap during the drive. The kids were all excited to see their cousins, aunts & uncles, and grandparents. And the horses and dog. :) Raya followed her daddy around while he helped Grandpa feed the horses.

By then, it was getting chilly and windy so I made her come back inside since she's still not over her cruddy cold. It was time for dinner too so we headed in to help get things ready. I had brought her special crackers and a fresh jar of strawberry jam with us but she wasn't interested. She asked for Fritos but then got mad at me when I didn't let her put her hand in the bag to get them out herself and ended up not eating those either. She really just wasn't too interested in food.

After dinner, it was time for the games. Grandpa's birthday was last week so everybody took turns telling funny stories and asking him questions. Raya entertained herself by moving her little purple chair all over the place while the big people talked and laughed.
(she's over by the fireplace)

Then the kids did their white elephant gift exchange. Some of the cousins were sick and couldn't come and we missed them! Raya got a little backpack that says Purina on it. :)

The adults had a white elephant gift exchange, which was then followed by what was probably the most irreverent version of the Nativity that the kids have ever acted out. Raya somehow got left out of it but she was getting pretty tired by that point anyway. The kids got to open their new jammies and put them on and then we said our goodbyes and headed home. They put out a plate of cookies for Santa including the allergen-free cookies I had made for Raya so she wouldn't be handling cookies with wheat in them. (Side note, so far I am NOT a fan of gluten-free/rice-free/oat-free/dairy-free baking. That's pretty much EVERYTHING that makes baked goods good. They weren't terrible, just super delicate and dry even though I followed the directions to a T.)

I realized when we were putting out the stockings that none of them were labeled so I ended up pulling out the good ol' Micropore and a Sharpie marker and got them labeled.

We got the kiddos bedded down for the night and I crossed my fingers that Raya would be able to sleep in her own bed all night since she ended up on the couch with me every night for the previous week. (reflux+head/chest cold is a bad combo) I also left her connected to her pump all night with it turned off so that she would stay in her bed in the morning and not go peek at what Santa brought. We heard her yell at about 7 but the big kids were nice and helped her get out of bed and take her IV pole in the girls' room to play.
You can pretty much tell from that picture how she was feeling. Lousy. Her tummy was bothering her, she couldn't breathe, and she was complaining that her ear hurt, plus the cheek on the same side as the ear she said was hurting was bright red. I hoped that the Christmas morning festivities would help her feel better.

We're the kind of parents that staple a sheet to the wall across the doorway so the kids can't peek at what Santa brought until we're good and ready for them to see it. :) When the cameras were ready, we turned them loose. If Santa had realized how excited they would be about the Pez dispensers he put in their stockings, he probably wouldn't have bothered with the bikes.

Raya had a better understanding of Santa this year but she really just followed the big kids' lead. Instead of a bike like he brought the big kids, Raya got a nice wooden dollhouse. I thought she'd be really excited about it but she just plain didn't feel good.
I would like to point out that one of the first things she did with her dollhouse was locate the little wooden toilet and put a guy on it. He's front and center on the 3rd floor if you missed it. I laughed so hard when I noticed that she'd done that. She doesn't look very happy but she really does love the dollhouse. Especially the little red baby she's holding in the picture. She LOVES it. I tried to get her to smile and this was the best she could give me.

It's pretty funny how fascinated she is with putting the dolls on the potty. She could care less about the real potty.

Yep, this is the face of a miserable girl. I honestly thought we'd be making a trip to urgent care/ER.

The big kids had all gotten little boxes of cereal in their stockings, which was the biggest deal aside from the Pez dispensers. Since they were all eating something out of their stockings for Christmas breakfast, Raya wanted to eat something from hers too. She ended up eating Pez. She ate the whole pack of strawberry Pez while her formula started running.
We also discovered that she does not like lemon Pez.

After we had all eaten breakfast (cereal, orange rolls, and Pez), we opened presents. In between opening presents, Raya would grab her cheek and tell me that her ear hurt, or cry, or lay her head on my lap. It was lousy. I don't like it when any of my kids are sick, but when Raya actually feels bad enough to ACT sick, then we know she feels really awful and it makes me sad. She's felt awful so much already in her little life that it's just not fair for her to get sick. Anyway, she was happy with her presents and really liked opening them. We got her a "Super Tubie" shirt since we bought our other tubie shirts before they came out with the Super Tubie one. She was happy. :)

I think it was about 5 minutes after this that she started vomiting. Hot pink Pez vomit with a little of last night's formula mixed in. Not fun to get out of the carpet. On the bright side, it blended in nicely with her jammies so they probably won't be stained, and neither will the pink blanket we caught most of it with. Oh, and the best part was that we got the whole thing on video. Merry Christmas!

It still makes me laugh how the other kids aren't the least bit fazed by Raya puking. We turned off her formula, put her new Tubie shirt on her, scrubbed the hot pink off the carpet and couch, gave her some tylenol for her ear, and moved right along with the day. She got some fun things but her favorites so far seem to be the necklaces & little lunch pail from her grandparents, the dollhouse from Santa, and the miniature My Little Ponies from her big brother. She doesn't really care for the ponies that have hair, but she LOVES the little plastic ones that are just the right size to fit in her hand. Sadly, her least favorite thing of the day was the wonderfully soft, fluffy blanket that her grandparents gave her. For some reason, she was pretty freaked out by it and didn't really want anything to do with it once it was out of the wrapping paper.
We put it on the shelf in the closet and we'll re-introduce it again when she's feeling better. Or I'll steal it because it's so soft and fluffy. :) She really just felt lousy the whole morning and really didn't enjoy it much at all. I kind of wish we could have a do-over just for her sake.

After we were done opening presents, I started running Pedialyte into her and that seemed to help. By the afternoon, she felt SO much better and had a lot more energy.
It just reconfirmed that she really does feel best when there's no formula or food going into her. It's too bad she can't survive off of Pedialyte. I don't know what to do with this kid sometimes!

The big kids wanted to try out their new bikes so we got everybody dressed and put on our light jackets to go enjoy the beautiful weather. Raya still hasn't totally mastered the art of riding a tricycle but she wouldn't let me help her so she swerved like a drunk man all the way to the grass park. It was adorable. Melted my heart. ♥

She LOVED going through the leaves. I was proud of her for not obsessing over wanting all of the leaves off of the sidewalk like she's done before under that tree. And for making it all the way to the park with minimal help.

While we were playing at the grass park, Raya walked/ran/stumbled down the hill. It was a bit of a struggle for her to get back up but she made it. She ended up crawling most of the way because her feet weren't quite cooperating yesterday.

When the big kids were worn out, we headed home to relax and watch a movie. Raya was still going back and forth between being happy and feeling good, and being super crabby & not feeling good. While I made dinner, she was whining terribly, clinging to my legs, pushing my legs, and just being a pill. I gave her some smarties so she would go out of the kitchen (I was dealing with hot food) and oddly, as soon as she ate the Smarties, she was happy again. I think her blood sugar was all over the place the whole day but we don't have a monitor to check it so I have no idea what her highs & lows were.

The kids had gotten new sheets from my parents so we spent some time changing their sheets & cleaning up their rooms. Raya felt really lucky that we let her climb onto Kaida's bed because usually, that's a no-no.

I didn't want her to be left out when it was dinner time but none of the foods we were having were safe or appealing for her, so I put out a bowl of ice so that she could go through the "buffet" line like the big kids. We had our traditional Christmas dinner of various appetizers, which is one of our favorite traditions.

Then I remembered that I had gotten her some lemon wafer cookies that don't have any of her allergens in them so that's what she ate for Christmas dinner. She was pretty happy.

After dinner, we cleaned up and said prayers and the kids headed off to bed. Raya wasn't feeling good again so she snuggled up on my lap and fell asleep. I think that was my favorite Christmas present, although I did appreciate the laundry baskets and cookie sheets that Santa brought me.

I hated to take her to bed because I don't get to snuggle with her very often. Apparently she hated for me to take her to bed too because she woke up feeling yucky again at 11:00 (right after I had gotten nice and comfortable in my own bed) and it took me until about midnight to get her feeling good enough to go to sleep. On the couch again. I ended up running Pedialyte in overnight at a low rate with a Farrell bag for extra venting because she just didn't feel good. It helped, and she was feeling a lot better this morning. It was a bummer that we had to start feeding her formula again. She's still not at full-strength formula but we'll probably work up to that tomorrow. My fingers are crossed that she sleeps in her own bed all night because I don't know if I can do another night on the couch.

So that's our Christmas. It's hard to be full of joy and happiness when your kid is miserable yet again and isn't able to enjoy herself even though she really deserves to, but we did have a good Christmas. Merry Christmas from our family to yours!
(We took normal pictures too but they didn't turn out as nice as this one. :)


  1. The bowl of ice thing made me chuckle! One of K's favorite foods is "Icey-O's" which is crushed ice that she pretends is cereal.

    Sorry she was feeling crummy for Christmas. We had that going on, too!


Post a Comment

All comments will require approval from blog owner prior to being published.

Popular Posts

Adhesives Part 1: Adhesives & Taping Techniques for NG tubes

This series has been a long time in the making. Back when Raya got her NG tube, I had no idea there were so many different adhesives on the market. At the hospital, they had used some kind of fabric tape in a box that had to be cut with scissors and that was the ONLY thing we accidentally left at the hospital. Raya caught her little pinky finger on the tube a couple days after we got home and the only medical tape I had ended up bringing home was Durapore. This tape is VERY sticky, very strong, and definitely not the best option for the tender little cheek of a 2 month old baby. A couple days later, we went to the GI doctor and the nurse saw the tape and told me that Duoderm would be much gentler on her skin and she gave me a couple of 6x6 sheets to try out.
That was the beginning of our trial-and-error process of figuring out which types of adhesives were better for all of the different things we used them for. This will of course NOT be an exhaustive review of every adhesive out the…

Sensory Processing Disorder: How to Make a Weighted Blanket

Lately I've been toying with the idea of making Raya a weighted blanket. She loves heavy things and has a lot of sensory seeking behaviors in regards to proprioception. Translation: she craves sensory input that helps her to gain awareness of where her body is in space, and it takes stronger than average input for her to get the feedback that her body is craving. (or at least that's how I understand it :) She seeks out "heavy work" activities, like carrying heavy things, pushing heavy things around on the floor (chairs, full laundry baskets, etc), and anything that gives heavy resistance to her muscles and joints. Lucky for us, carrying her backpack is a good heavy work activity because the poor kid gets to do that for a few hours a day. :)
The idea behind a weighted blanket and other heavy work activities is that when the child gains greater body awareness through proprioceptive input, the nervous system can be calmed and the need for constant fidgiting, moving, jump…

Feeding Tube Terminology: G tube words

One of the many things I didn't have a clue about before Raya got her G tube was the fact that there are LOTS of different kinds of G tubes, all with similar but different features & functions. Some of the terminology that was tossed around in the beginning was very confusing. When I met with the surgeon to pick out a button for when Raya's initial tube was ready to be changed, they pulled a bunch of tubes out of a cupboard, put them down on the table in front of me and said, "What kind do you want?" I had NO idea what to pick, all I knew was that anything would be better than what we had at that point.

Here are a few things I wish someone could have explained to me before Raya got a G tube:

1. What the heck does PEG mean?
PEG stands for percutaneous endoscopic gastrostomy. In other words, a gastrostomy tube is placed through the abdominal wall using an endoscope to visually guide the surgeon to the best location to place the tube. The term PEG is used to refer to …