Feeding Raya

I have to start by saying that I had no idea how controversial our decision to use corn as Raya's first solid food would be. I have been a little surprised (but also not really all that surprised) by some of the responses I've gotten, even just to my facebook updates about Raya trying corn products. I'm doing my best to be respectful of the very strong negative feelings other people have towards corn that is produced traditionally and may be a genetically modified variety, but I would hope that respect for my own position would be reciprocated. This is certainly not targeted at anyone in particular and several of the comments have been very kind and thoughtful, which I appreciate. Having decisions questioned by other people is pretty common for parents of children with medical issues (well, and just parents in general) and this is just another one of those areas where people feel like their way is the best way and if I choose something outside of their viewpoint, I must be…

Raya is pretty much the happiest girl in the universe right now. At her GI appointment 2 weeks ago, we made changes to her medications and her doctor said that after the med changes were done, we could start a single ingredient food and see how she does with it. For several reasons, corn is the most logical choice for her so that's where we're starting.{if you are anti-corn, anti-Monsanto, anti-GMO, etc., please refrain from commenting}Today, the last of the changes have been made so it's time to start letting her eat. The big kids went to a movie with friends this morning (because Donny's car is still in the shop so he's driving mine this week) and Raya and I decided to go for a walk. I realized last night that we don't actually have anything in the house that Raya can have so we walked to the nearest store and got her some tortilla chips, corn tortillas, and corn cereal. It was about 2 miles round trip, so that took care of my exercise goal for the day. It&…

Today was kind of a big day for Raya. For the first time ever, she was able to go to Primary at church. Kids normally start Primary the January after they turn 3. For several reasons, we have not been taking Raya to church since she was about 21 months old. We were fortunate enough to have a wonderful respite provider that was able to stay with her while we went to church. I have no doubt that keeping her home prevented her from catching a lot of colds & other yuckies and I'm grateful that we were able to do that. Now that cold & flu season is over and her previous respite provider left, we decided it was the perfect time to start bringing her to church. The last couple weeks we've taken her to the adult classes with us but she now has a new respite provider who was able to start today, so we were able to send her to Primary. (*happy dance*)

Things didn't start out too well. (hence the no pictures) As soon as she saw her new respite provider and we sat down at chur…

The last week of school has come and gone. It kind of ripped through here like a wildfire. Here's how it all went down.

Monday:
Kaida and I took the big kids & Raya to school and then we had a little breakfast date since it was our last free day before the end of the year. (*sniff sniff*) Kaida will be heading off to kindergarten in the fall and we won't get to have our 2 1/2 hours of peace & quiet together while the other kids are all at school. It has been fun to have some time alone with Kaida. She loves to be by herself. (in a good way) She is very independent and loves to be left to herself with her imagination. She can entertain herself for hours with just a few little toys that she acts out all kinds of scenes with. She also loves to watch movies & shows on Netflix. Her current favorite is Horseland but she also went through a stint where she watched "I'm Alive" every day after we took the kids to school. Then she had nightmares while she was t…

Raya has been doing dishes a lot this week. It's an activity that calms her down. She spent 4 hours on Monday doing dishes and about 2 1/2 hours today. I never plan for her to play in the sink that long but on Monday she didn't get water everywhere so I just let her be. Today was a HUGE mess though. I got a kick out of what I fished out of the sink when it was time to clean up. When she started, there were no toys in the sink but she had all kinds of stuff in there, including the old G tube that I had replaced today while she was doing dishes. (the extension tube got caught on the chair and pulled out her tube because it was old and the balloon wasn't holding water) She LOVES doing dishes!

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…

This evening while Donny and the 3 big kids were at karate class, Raya and I decided to get out of the house for a while and go walk around at the mall. It's an outdoor mall and the weather was beautiful this evening, so it was perfect. We started to walk past the Disney store and she saw the sparkly red floor and wanted to go inside because she liked it. I figured she'd enjoy looking at all the cute things they have there so we went in. By then, she was tired of sitting in the stroller and wanted to walk, so I let her walk and put the pump backpack on top of the stroller canopy like I usually do.

She was on cloud 9 the whole time. To see the level of excitement over every little thing she saw, you would have thought she had been locked in a tower like Rapunzel and had never seen the outside world before. She was cracking me up. She'd pick something up and say, "OH, I LOVE THIS! It's so cute! I think I should borrow this on another day." She repeated this ove…

Ever heard the term "speech explosion" tossed around? We have most definitely experienced one of those in the past couple of months. We thought she was talking a lot and speaking really well and then all of a sudden, her articulation got a lot better and she has even more to talk about. Nonstop. All day long. We have officially entered the stage where I sometimes cringe when she talks in public because I don't know what's going to come out. It's okay with me though because even if she said something embarrassing, it would be worth the entertainment factor. I love the way her voice sounds and the way words sound when she says them (most of the time) and I love the stage she's at. She's come out with some real gems lately but I can never remember all of them when I want to.

I think I already shared this one but a few days ago, she and I were laying on the couch and Kaida was in her room having a moment of 5 year old drama. Raya sighed deeply and said, "…

It's amazing how the mere anticipation of an important appointment can be exhausting. And nauseating. I normally schedule appointments like that for early in the morning so that I don't have as much time to stew over things but today's appointment wasn't scheduled 3 months in advance like they usually are so we were stuck with a 2:15 appointment.

I don't know why waiting for this one was so intense for me today. I really love her GI doctor and Raya really loves her too. Raya was rather cute and charming at her appointment today. :)

Nevertheless, waiting for appointments always makes my stomach churn. It's not like there were going to be any huge decisions made or any bombs dropped. I was anticipating disappointing results from the impedance study. They weren't completely disappointing (as in completely NORMAL), but there was one thing that was COMPLETELY disappointing and not at all expected. There was a page attached to the results (which our GI had not see…