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Weekly update


Last Sunday was our 13th anniversary. We celebrated Saturday night by going out to the same restaurant that we went to for our 1st anniversary. It's our favorite special occasion restaurant and we were SO excited to go there again. It had been way too long since we had been there! Since it was a special occasion, I even showered and put on makeup. :)
(we are very pale people)
Sunday after church, we went to Donny's parents' house for dinner to celebrate his mom's birthday. Raya has been doing SO well lately with being happy, keeping a more even mood, and eating food, and Sunday was no exception. She loves being around her cousins, aunts & uncles, and grandparents, and there was food that she was able to eat, so she was a very happy girl. She sat at the little table with Kaida and a couple of cousins and ate more food than she's probably ever eaten at a family gathering.

When all was said and done, she had eaten some slow cooked pork, a couple of big Fritos, some nibbles of a couple veggie straws, 6 pinto beans, and a bite of her special chocolate that I made her a while back to save for special occasions. She did great!

 Sunday night was kind of crazy between having to drive home (an hour) from the in-laws' house, doing all the usual Sunday night stuff, and then having company for the night. One of my dear friends was in town with her 3 year old and they stayed with us Sunday night and all day Monday.

Monday was pretty crazy too. The kids were at school, Donny was back to work after being off the week before, and I had to get my teeth cleaned. My house needed cleaned too and was getting to the point of driving me crazy but it just had to wait. Raya's respite provider was back after being sick all week last week, so Raya was excited to see her. It was just a hectic and stressful day though. The previous week had been so busy and the weekend had been really busy too, and I felt like I hadn't gotten a moment to breathe yet. I don't even remember what the kids ate for dinner. I dropped my friend off at her sister's house and then had to go to the grocery store. Bedtime was a blessed occasion Monday night.

I had a hard time getting myself going Tuesday morning. I did not get enough sleep Monday night to make up for how worn out I had gotten on the weekend & Monday so I was dragging on Tuesday. We did get to therapy on time though and Raya's feeding therapist was back in town from her vacation. I got a good laugh when we put Raya's lunch in the fridge before OT. I opened the fridge and saw this:

It made me chuckle and wonder what was going on at the clinic after work. If I was a drinker, there would have been many occasions on which feeding therapy sessions would have driven me to drink.

Raya had been doing so great with eating while Miss Heidi was gone on vacation that I was just crossing my fingers that she would still want to eat when she came back. The last appointment we had with her before she left on vacation was really bad. Raya had completely refused to do anything because she just didn't feel good. Then she suddenly started doing great, and now she's starting to trend back down a bit, so I was really hoping she'd do well for Heidi. She did actually do pretty well. She had refused to eat the potato she asked Donny to make her for breakfast, so we brought it with us. It turned out that she was just upset because she didn't think he had put enough butter on it. She likes to have a little bit of potato with her non-dairy margarine. She ate most of the potato and one grape and was happy the whole time, so that was good enough to make Miss Heidi happy.

 By the time we were done with OT, it had started raining a little, and it was raining at home when we got home. Raya really wanted to go play in the rain so I let her. It made her happy
Until she got her fingers muddy. Then she wanted to come inside and wash her hands.

Aaaaahhhhhh, Wednesday. It was a lovely day. Raya had school and the big kids had school and Piper took a nice nap, so I had the peaceful, quiet morning that I so desperately needed. It really was nice. I didn't accomplish much during that time but it gave me a chance to regroup.

Wednesday was my friend Danielle's funeral. Since we are from 2 different states that are very far apart, I couldn't go, but she was on my mind all day. In honor of her and her battle with digestive tract paralysis, as well as Raya's struggle with gastroparesis (one of the components of DTP), Raya wore a green shirt to school on Wednesday. She was having a bad stomach day that morning. I gave her the morning doses of her meds, and the next thing I knew, she was laying on the tile floor with a frowny face because she didn't feel good. I asked her how her stomach was feeling and this is what she told me. "Remember that other day that I throwed up at therapy? That's how my tummy feels." I was SO proud of her for verbalizing how she was feeling! I could pretty much tell that she wasn't feeling well but she has a hard time expressing how she's feeling, even though she can talk quite well, so I was really pleased to hear her tell me that she felt like vomiting. And also sad that she felt like vomiting. I asked her what she needed and if she needed to wear a Farrell bag to school, and she shook her head yes. We got out the little backpack she uses when she just needs a Farrell bag at school and snapped this picture:
You'd never guess she had been laying on the floor a few minutes earlier in pain and feeling like she was going to vomit. Her resilience amazes me.

My favorite day of the week is Thursday. We don't have to go anywhere or do anything on Thursdays. It's great. Raya decided she wanted to wash dishes for me, so I let her. Raya washing dishes pretty much amounts to playing with a sink full of syringes and bottle parts. They don't really come out much cleaner than they go in but it keeps her happy and doesn't involve electronics.

Thursday is the day that her respite provider comes to do habilitation with her. They work on things like eating lunch and using the toilet, and when the weather cools down enough, we will start going outside to work on community safety and some of her other hab goals. Raya asked for a potato with butter for lunch but only ended up eating a tiny bit of the butter and a nibble or two of the potato before she said her stomach hurt.

The rest of the day was kind of downhill for Raya. She got upset at dinner when I gave her the potato she hadn't eaten for lunch. When we warmed it up, the butter melted and she did not like that. She ended up accidentally spilling her cup of ice water onto her plate, which made her even more upset. It was not her worst dinnertime but it wasn't good.

I could tell that she wasn't feeling well. She went to bed that night but it ended our 2 week streak of Raya staying in her own bed all night. She slept through the night for some of those 2 weeks (probably most of it) but she did tell me a couple times that she woke up during the night but stayed in her bed. I was happy with that too! Anyway, Thursday night ended the streak when she came out to the couch during the night.

I had a nice day Friday too. Raya was feeling better Friday morning than she had been on Wednesday so she didn't have to wear a Farrell bag to school. I had another very peaceful morning and was able to do some studying & pondering that I really needed. I fed Piper a bowl of roasted spaghetti squash, carrots, and homemade turkey broth with a little bit of probiotics and coconut oil stirred in. She loves her food!
(don't worry, I never stepped away from her while she was in the chair)
Raya's really good streak seems to be winding down. She had been doing so well but for whatever reason, she was just worn out on Friday. Her ability to regulate her emotions went out the window and she spent a lot of the afternoon like this:

 I can't remember what she was even crying about but the reason she gave me changed 4 or 5 times in as many minutes. Thankfully, since her mood changed at the drop of a hat all day, she perked up when the big kids got home because she was so excited to tell them about the dentist visiting her school. Amusingly, they had also gotten cupcakes in her class for one of her friends' birthdays. She obviously couldn't have one of the cupcakes but I overheard her say to Cole, "Guess what, Bubba! I got a squirrel ring and I didn't even have to eat a cupcake!" The cupcakes had little plastic rings on them and the teacher washed them all off and gave them to the kids. She totally thought she had pulled something over on someone because she got a ring without even having to eat a cupcake. I love that girl!

Raya got to go to a birthday party for one of the little boys in her preschool class. It was the first birthday party she had ever gone to so she was pretty excited. It was at an indoor bounce place, so I figured she'd love it since she loves bouncing on the inflatable at therapy. Before we left, I told her that her friends were going to be eating pizza and birthday cake at the party and asked her if that was going to bother her. She said it wouldn't bother her, but the idea of her just sitting there while everybody else ate bothered me so I offered to get her some fries from Chick-Fil-A on the way there. She loved the idea, so we drove through and got her some fries. Between that and having some car trouble, we ended up being about 10 minutes late, so the other kids had already started the party.

The first thing she did when we walked into the very crowded, very noisy room was cover her ears. By the time I got her shoes off of her, disconnected her from her feeding pump, and got our things put into a little cubby, she had taken her hands off of her ears and was ready to play. She saw several of her friends playing on a huge slide in the corner, so she hurried over and climbed all the way to the top. Then she sat there. And sat there. And sat there. She thought about going down the slide, and then went back to try to climb down the way she came up. After about 10 minutes and several attempts to try to climb back down or convince herself to slide down, she finally made her way back down through the sea of kids trying to climb up. It was just a little too scary for her.

When she got down, we went and found her a different bouncer to play on that was less scary, and from then on, she had a great time. That one had a small slide in it and after she had gone down it a dozen times or so, we moved on to a different room where there was another HUGE slide. I didn't expect her to even climb to the top of that one, much less go down it, but she did it probably 4 times. Then she moved on to another one that had a curved slide on it. This is the only picture I got of her:

 She was soaked in sweat by the time it was time to move on to the next room for pizza & cake. She played hard while she was there, but so did a lot of the other kids and I didn't see any others that were flushed and sweaty like she was. She also didn't do much interacting with other kids, which fits with what her teacher said about how she is at school. Interestingly, during the 2-ish weeks that she was feeling good, her teacher said that she did initiate more interaction with the other kids than she usually does and spent less time clinging to the teacher & aide's legs during play time.

When the kids sat down at the tables, I put a couple of waffle fries on her plate and opened a thing of sauce for her to dip in. Her little friend was sitting next to her and when one of the party helpers asked the girl if she wanted pepperoni or cheese pizza, she turned to her mom and said, "I want fries." It made me laugh.
I breathed a sigh of relief when the cake came around and Raya was completely uninterested, both in the cake and in the fact that all of her friends were eating it. She didn't care one bit. It has not always been that way and I'm incredibly thankful that she has gotten to that point. In some ways, life is just easier when she doesn't care about food.

Once we got home, she was so crabby and emotional all afternoon. She cried at the drop of a hat about nothing. Based on how much energy she had used for playing, you would have thought she would have been worn out, but she got more and more wound up as the afternoon & evening went along. She was being really silly before bedtime. She came up to me while I was in the kitchen and said, "Look, Mommy! *ha ha ha* I'm measuring my head with my braids!" And she laughed and laughed and laughed. She has spent too much time at doctor appointments getting vitals taken and getting measured!



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