Today was a little less awesome than the last few days that I wrote about yesterday. I knew it wasn't going to be the same when she slept until 7:30 this morning. That doesn't happen often. She's usually up at the crack of dawn with the rest of them.
When she woke up, I heard her dramatic yawning from down the hall but then she didn't get out of bed until I went in her room and helped her up. She was moving really slowly this morning and kept telling me how tired she was. Today was picture day so she wore her current favorite shirt and the leggings that came with it. Note that I did not say favorite outfit. She would prefer to wear the shirt with a fluffy skirt that does not match it except for the fact that they both have Hello Kitty on them. I tried to convince her to wear her very long hair down but she is fixated on ponytails now. Sadly, her kitty ear headband broke last week or she undoubtedly would have been wearing it. I never got the full story but there was something about her knee pushing on it kind of hard and then it broke. And now we know why we don't kneel on our headbands. She doesn't like anything but "a plain ponytail in the back" but I did talk her into letting me curl it. I also got her to let me take a picture of her on the way into the building.
We were late, thanks to the snail's pace a certain little redhead was moving at. The kids were already at circle time with the speech therapist when we walked in but Raya still insisted on stopping to write her name after she washed her hands because "that's how we're supposed to do it, Mommy." Well okay then!
Piper and I ran a couple of quick errands and then came home so she could have a short nap, followed by another errand, and then we picked Raya up from school. She was all peppy and full of energy when she came bouncing out of her classroom, but by the time we got outside she was spent. That is something that happens fairly often. She goes nonstop and puts all her energy into holding herself together while she's at school or out in public. There is very little middle ground with her, and eventually she crashes. Her respite provider has been sick this week and wasn't able to come again today, so both of the girls got to accompany me to one of my top 5 least favorite places to take small children: the post office. Thank heavens Piper is still in her infant seat. Raya was not a happy girl when we pulled into the parking lot. She cried and whined and covered the buckles on her car seat so I couldn't get to them to undo them. I told her I would carry her feeding pump for her and she said, "Mommy, I'm just SO tired that I really wish you could carry me AND my backpack." And sometimes when you can see the exhaustion on your 5 year old's face, you rearrange the stuff you're carrying and carry her too. She is getting too big for me to carry very much. I was pretty proud of myself for getting all of us into the post office in one trip. People looked at me funny for carrying my baby in an infant seat AND carrying my 5 year old but I'm beyond caring about things like that.
I thought she would perk up when we got home but she really didn't. She was legitimately exhausted. As funny as it may sound, I think today's exhaustion may have been the fallout from how well she's been holding herself together the last few days. She was trying so hard to be happy and sweet today but couldn't stop herself from getting weepy and emotional too. Not many things are more pitiful than a 5 year old who is trying to be happy but can't stop crying at the drop of a hat.
I disconnected her from her backpack for a while in between bolus feeds so she would be hungry for lunch. It was a relief when she still wanted to eat her chicken sausage again today. I didn't think she would want to eat. I told her I wanted to put some smoothie in her G tube again like I had done before and she said she didn't feel like doing that. I told her I'd make her a deal, and that I would cook her a sausage for lunch as long as we could put smoothie in her tube while she ate the sausage. That sounded agreeable to her so that's what we did. Once again, she wanted nothing to do with tasting it, but I was totally fine with that since I still got it into her stomach anyway. Piper on the other hand, was thrilled to have a taste of my smoothie. She worked on her straw skills and did pretty well with it as long as I sucked the smoothie up into the straw and then pinched it before I put it up to her lips to try sucking out of it.
After we ate lunch and Piper went back to bed for an afternoon nap, Raya wanted to snuggle. I had to pump a bottle for Piper for later, and by the time I came back, Raya wasn't in a snuggle mood anymore. I can't remember what she got upset about but the next thing I knew, she was crying again and it was a very sad cry. Bless her little heart, once she got going, she just couldn't stop.
I didn't quite know what to do with her but I thought some fresh air might do her good, so I offered to put a blanket in the back yard and let her lay out and watch something on Netflix on the iPad. I know that sounds a little ridiculous to be watching a tv show outside, but it turned out to be exactly what she needed. The weather has been absolutely beautiful and she was relaxed and happy until it was time to come in for dinner.
She didn't have much energy in the evening either and needed more help than usual with getting ready for bed. She was still as sweet and cute as could be though. When she was saying her bedtime prayers, she added in, "And thank thee that it can be summer soon so I can go swimming..." After she finished her prayer, she opened her eyes and smiled mischievously at me because she knows she's been driving me crazy lately asking me when it's going to be summer so she can go swimming. She gave me hugs and kisses and then happily laid down in her bed and snuggled with her carefully arranged blankets and stuffed animals. Those are the moments that melt my heart. I don't know what tomorrow holds for us but Raya and I are both looking forward to having a morning where we don't have to go anywhere.
I picked up my phone later to find that these silly big girls had taken a selfie with it:
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!*