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Sunday, May 19, 2013

Rough weekend

Raya has had kind of a rough weekend. It started with the little tantrum that ended in a formula explosion at the mall Friday night. Her emotions have been running wild ever since. Her OT says it's because she's moving back into the "self-regulation" phase. Throw in medication & calorie changes and we have ourselves one cute little mess this weekend.

Yesterday was just a rough day all around. Donny's uncle passed away last week from liver cancer at the age of 63, and left behind a sweet wife and 6 children. Donny had to teach a class first thing in the morning and since they just moved locations and started a new "semester" with the school he's teaching at, he didn't feel like he could ask for a sub to fill in for him. That meant that I was home alone to get all 4 kids dressed & ready to go to the viewing at 9:30 and he was going to meet us there for the funeral. As we were getting in the car, Raya decided she wanted a drink of water out of the house. I offered her a drink from a water bottle since all 5 of us were already buckled in and ready to pull out of the garage. She didn't want a drink out of a water bottle. Then she did, but she wouldn't ASK for it, she just kept yelling at me, "Give me a drink of water!" I gave her until the count of 3 to say please and she refused, so we pulled out of the garage. She screamed all the way to the church.

When we got there, I offered her a drink of water again and she wouldn't answer me so we left the water bottle in the car. She cried all the way into the church. Crying at a funeral is generally accepted but not the way she was doing it. After a few minutes of crying, I took her out to the car to get the water bottle but then she just found something else to cry about. That's how you know it's not just your average toddler tantrum. A child who is unable to regulate his or her emotions will not stop crying just because you resolve whatever they were crying about in the first place. My sweet mother-in-law took her out for me for a few minutes so that I could pay my respects and visit with Donny's cousins & aunt. She showed her pictures on her phone of the new horse their mare had a few days ago and after a few minutes, she calmed down.

Since she had calmed down, I took her and the other 3 kids to the nursery room where some teenage girls were kind enough to babysit the little kids during the funeral. Ashtyn was in there with her or else I wouldn't have left her. It was a really good thing Ashtyn was there because we had another pump bag break. During the funeral. This time it was completely and totally the manufacturer's fault. Right where the tubing comes out of the bag, the tube had adhered to the pump bag, probably from being squished during transport or sometime during the packaging process. At some point after I had filled the bag and put it in the backpack, the tubing had separated from where it was stuck to the front of the bag and had ripped a hole in the bag. Not just a pinhole either. It wasn't a huge hole like the one the night before, but it was big enough to make a mess and it was at the bottom of the bag. Thankfully, Ashtyn is a smart girl and turned the pump bag upside down and then put a bunch of paper towels in the bottom of the backpack to soak up the spilled formula. She also turned off the pump and disconnected Raya so nobody had to come and get us during the service. She is such an awesome big sister!

The down side was that Raya didn't get fed until about 3:00 that afternoon. She had drinks of water, but no formula since I didn't have any extra with me. The burial was going to take place that evening a few hours away, so after the service was over (around 12:45) everyone went back inside to have chips & salsa, which is exactly what Donny's uncle would have expected us to eat at his funeral. :) I don't know how, but Raya had a ridiculous amount of energy. She must have been burning through some glycogen stores because she just went nonstop until we got home. She always seems to feel better on an empty stomach except for the part where she gets super crabby when her blood sugar gets low.

Last night, I put Raya in her bed when we went to bed and she actually stayed there until 6:00 when she woke me up demanding something. I don't even remember what she wanted but I vaguely remember telling her to go get a clean diaper, and then I remember looking again a while later and she was asleep on the floor next to my bed. That's two nights this week that I've gotten to sleep most of the night in my bed and it was SO nice.

"Moody" does not even begin to touch the way she's been feeling today. At the funeral yesterday, Raya got her first taste (that she can remember) of being in a nursery classroom at church. Today, she wanted to go back. When it was time to get her ready for church and I told her she was too big for nursery, she got upset and kept yelling, "I'm a LITTLE girl! I can go to nursery!" She laid down on the floor in my bathroom and in the process, she popped open the clamp on her extension tube and all of the Splash she had drank was in a giant puddle under her back on the floor. I put her in the bath and from there, it was just a cascade of her getting upset about one thing after another. Of course her mood had nothing to do with the actual things she was crying about, she just got going and couldn't calm herself down. Once I got her formula going, she was happy and stayed happy until about the last 45 minutes of church. (church is 3 hours long.)

It was really, really crowded during the last part of church. Even I was feeling a little claustrophobic. She told me she wanted to go to "Primary" (Primary=classes for the kids) so I decided to take her. We plan on sending her to her own class once her new respite provider starts, but we're still waiting for that. I took her to the classroom and opened the door, interrupting the class, at which point she looked in and decided she wanted NOTHING to do with that. She immediately turned around and clung to my legs so I decided we'd wait until another week to join the class. After that, she was done. It didn't matter what I tried to do with her, she just wanted to go back to the nursery classroom she got to play in yesterday, which was in a different church building about 10 miles away. She was tired and crabby and got angry at me for not doing what she wanted.
We walked the halls a little bit but really it was more like she was trying to get away from me and thought I was chasing her. I was just trying to stay close enough to keep her from getting into any trouble. It really just went downhill from there. By the time we finally went home, she had been screaming and throwing her toys and I couldn't get Donny's attention to get the car keys from him, so she and I just waited outside on the grass.

It didn't end when we got home either. She got upset about one small, silly thing after another and wouldn't agree to anything I tried to get her to do to redirect her. Finally, she asked if she could do dishes. Sure enough, as soon as she started playing in the sink, she calmed down and felt better. I'm glad that there are at least some times when she can figure out how to calm herself down. This phase is a hard one to push through and gets pretty exhausting for me. Hopefully the changes we are making with her medications will be helpful and not make her feel worse. So far, I'm not convinced that it's going to work. Her stomach and throat have been bothering her today, but I don't know if it's from reflux or from all the screaming and crying she's been doing. Her gastric emptying seems better today than it was the first day on Duocal but yesterday threw things off so badly that I think we need a few more days before we'll be able to tell for sure whether or not it's going to work out for her. Changes are hard.




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