INTELLECTUAL PROPERTY NOTICE

*ALL information on this website is the intellectual property of the blog/website owner! Unauthorized use is prohibited. If you see something you'd like to repost or share, please email me and ask first. This includes but is not limited to all text, information, and photos on the blog. Thank you!*

**Disclaimer**

**I am not a medical professional and the information on this blog is not to be construed as medical advice of any kind. ALWAYS consult with your child's doctor before making any kind of changes to his/her treatment, feeding schedule, etc.**


Tuesday, September 3, 2013

Catching up

I feel like August flew by. I'm okay with that, actually. Before too long, this hot place will start cooling off a little and we won't have to mortgage our firstborn child to pay the AC bill.

This cold we all caught (yes, I got it too, thank you children) has been beastly. Raya came down with it 2 weeks ago today and she still has a little bit of a lingering cough. The timing was lousy too (as if there's ever a convenient time for everybody to catch colds) because Kaida's birthday was this past weekend. Actually, Labor Day weekend is a lousy time for a kid to have a birthday because nobody is ever in town. We ended up having a nice, quiet little party for her and she was happy so that's all that matters.

Anyway, this little stinker has been up to her usual mischief. As fun as it is having her home with me two days a week while all the others are at school, there are many times throughout the day that I realize it's quiet and discover her doing helpful things like washing the bathroom mirror with a piece of soggy toilet paper.

Ever since she started practicing using the potty, she's been changing her clothes 20 times a day just because she can. I decided last week to get out a tub of clothes from the garage and see what fits who, and found this dress in it.
The dress was one that my mom started making for me when I was probably about Raya's age and then it sat in a closet for many moons. When Ashtyn turned 4, she finished making the dress and gave it to Ashtyn for her birthday. :) Now it fits Raya but she only wore it long enough to spin a few times and then needed it off because she didn't like the way it felt.

Friday was a long day. I picked her up from school and headed straight to her feeding therapy appointment. As we were walking out of the school, I asked her if she had eaten all of her grapes. I had given her 5 fairly small grapes that I cut in half, so a total of 10 pieces of grape. She said, "No, I ate one piece of grape because if I eated all of them then my tummy would hurt." I don't know why, but at that particular moment, her words stung and before I knew it, my eyes were full of tears. I know in the grand scheme of things, we have it really good. A lot of our little friends can't use their stomachs at all, and some of them rely on IV nutrition because even the smallest amount of food or liquid in their digestive tract causes extreme pain and they can't consume enough to grow on. Even so, it just sucks that she can't even eat a few grapes without feeling too full. One serving of average sized grapes is about 15 grapes or 1/2 cup. A typical child her age would eat that many grapes in addition to a sandwich, a few crackers, and something to drink, just to put it into perspective. It's overwhelming to look at the amount she can comfortably eat right now vs how much she will need to eat in order to no longer be dependent on the feeding tube and makes me wonder how we will ever get her past this point.

In spite of that, she did have a decent feeding therapy session that day. It took a LOT of coaxing (much more than usual) but she finished her applesauce in time to play a game on the iPad and then head to the next room for her OT session. She did great at OT, as usual. She loves OT and she loves her therapist.
{can we all just pause for a moment and marvel at how stinkin' grown up she looks these days? *sniff sniff*}

By the time she's done 3 hours of school and 2 hours of therapy, she's flat out exhausted and she's doing everything she can to stay awake. The second we walked out of the room we were doing her OT in (not even out of the clinic, just out of the room) she started being a stink to me. It's a long walk through the clinic to get to the front parking lot, and she had to stop and look at every possible distraction along the way while she ignored everyone around her and talked & sang to herself. I was hoping she'd fall asleep in the car on the way home but she didn't. When we got home, she was in a foul mood and refused to get out of the car because I had the audacity to open the car door for her and help unbuckle her seatbelt. I closed the garage door and carried some things in the house before going back into the garage to try and get her to come inside again. She kept throwing fits and ended up coming in the house (or was she physically carried in...don't remember now) and this is how that ended:

Then a few minutes later I had the audacity to open the lid of the toilet myself when I needed to use the bathroom, and my little self-appointed toilet valet was upset, which led to this:

A little while after that, she stopped raging and ended up piling all her blankets & several stuffed animals on top of me on the couch and climbed up. I think we were both asleep within a couple of minutes. She NEVER does that, which told me just how tired she must have been. I can't NOT document those little snuggles when I get them!

She slept for about 20 minutes and then halfway woke up and was angry, and flopped herself down onto the floor. I figured nap time was over so I put her blankets on the floor and got up. I walked back in a few minutes later and she had gone back to sleep though. She ended up sleeping for over 2 hours, which was amazing. She really needed it!

Donny worked a late shift that evening so I took Kaida to have some birthday dinner at one of our favorite little local places. On our way out, we got caught in a torrential downpour that soaked us to the skin in about 10 seconds. It was kind of fun. :)

We had a little (and I do mean LITTLE) birthday party the next evening and since the rest of us were going to be eating cake, I decided that I really wanted Raya to have something cake-ish too. Her birthday is coming up in a couple months and I would really love to be able to give her cake on her birthday. What I came up with was brownies made with black beans. They don't taste like brownies from a boxed mix, but they taste like chocolate and they don't taste like beans so I say it's a win! I'll post the recipe & pictures later. Raya was thrilled to have a treat other than Smarties or a Dum Dum.

The "after-party" wasn't so fun. She woke up having a bad coughing fit that night at 10:30, which I now think was brought on by reflux and was made worse by the lingering cold. Once she was awake, she was inconsolable. She cried, kicked her legs, and rolled around on the living room floor for about an hour. I tried talking to her, I tried asking her if she needed a very long list of things she possibly could have needed, I tried holding her, I tried putting her down, and NOTHING made her stop. I asked her if she wanted her stomach emptied because I suspected that the brownies were bothering her but she didn't want me to do it. Finally, just when Donny was ready to put her in the car and go for a drive, she climbed up on the couch next to me and stopped. When she was ready to talk, (or at least answer yes or no questions) I asked her if she was crying because she had been coughing. She said no. I asked if she was crying because her stomach hurt, and she said yes. I asked her if she wanted me to empty her stomach and she said no, but also said no when I asked if she was ready to get plugged back in to the pump. Who could blame her. That was a rough evening. She hasn't had a meltdown like that in a very long time, and I really can't see that it was anything other than stomach-related.

And what would a long blog post be without a funky picture of another strange thing she has going on. We've been talking for several months with neuro about the possibility of autonomic dysfunction and just when I start to think it's all in my head, she goes and does something weird. She and Kaida were taking a bath this weekend and I noticed that even though the water was pretty cool and Kaida's skin looked totally normal, Raya's arms, legs and face had turned bright red. She had white splotches on her cheeks next to her eyes, and also around her mouth and nose. The picture makes it really hard to see but you can kind of see it.

And of course I caught her mid-blink so it's a terrible picture, but you can kind of see it. Similar things have happened before but not when there was another kid in the tub with her to compare with and not when the water was as cool as it was this time.



1 comment:

  1. Yesterday I heard that H had a great day at school. I came home from work, and she was grumpy, and it turned into a full on sob-fest. She has done this a few times now, where it's like she's pushing herself to cry. She'll stop and then start up again. I have to wonder if she was mobile if I'd have pics like you do of Raya, sprawled dramatically about the house. I have no idea what was the matter, or what resolved it. But it's strangely comforting to know that other kids have crazy-pants melt-downs like this.

    ReplyDelete

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

Related Posts Plugin for WordPress, Blogger...