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Showing posts from August, 2013

Just don't judge people, okay?

I think it's safe to say that (at least for right now) we are officially entering the potty training stage. It's not because I think it's time or that it's a good idea, but a certain little strong-willed redhead has decided that she wants to wear big girl panties whenever we're at home. For the most part, she's done well this past week. She loves wearing her new unders and feels like a big kid. I'm excited for her and excited to see her working on something that I have not been too sure about her being able to do yet.

Ever since Raya hit about 2 1/2 (aka the magical age by which you should have your child potty trained according to the general public), I have had a hard time with the fact that I knew potty training was not going to happen for a while. It wasn't really something I discussed with people for several reasons. I felt a little self conscious about it and didn't think most people would understand the reasons we weren't doing it. It was …

We were having such a good day...

Raya had a pretty dang awesome day today. She wanted food for breakfast so I decided to let her have eggs. She ate one whole egg, which is about 100 calories, which is FABULOUS. The best part was that she was really happy about eating breakfast, which gives me hope that someday I'll be able to get her to eat a decent amount of food before school.

She's been clearing her throat a lot, which is probably a combo of having a teensy bit of a runny nose left over from last week's preschool-acquired virus and reflux. She played happily most of the morning while I got some things done and then it was time to plug her in. (that's what she calls it when we connect her to the pump for formula) She had come in a few minutes earlier and said that her stomach hurt and asked for Tums, so she ate a hot pink Tums, which I forgot about until I started draining her stomach to see what was left of the eggs. I realize the picture I'm about to post is totally disgusting but imagine my sh…

A med port to be excited about!

Anyone who has ever cared for a child with a feeding tube (especially a busy, mobile baby or toddler) has undoubtedly experienced at least ONE accidental feed-the-bed incident. (or the floor, or the carseat, or the park swing, or the floor in the grocery store, etc.) These incidents almost always involve the loved but also hated medicine port. In 3+ years of tube feeding, we've tried 4 different kinds of extension tubes with med ports, and I have ended up hating all of them. The port stays closed for the first day, but after a few doses of medicine are administered through it, it starts to stretch. Once it starts to stretch, the cap doesn't fit quite as tightly as it did originally. Moisture makes it slippery. Kids are squirmy and they roll around. Stretched out med port + slippery med port + squirmy, rolling kid = MESS! Beyond just the mess (which smells terrible, stains things, and pretty much ruins your night/day) an open med port means lost calories, lost hydration, lost m…

My funny girl

Oh, this girl makes me laugh. I am really really loving that she only has school on Monday, Wednesday, and Friday. Initially I was disappointed when I heard they were changing the preschool program and making it 3 days a week instead of 4, but I think I'm really going to like it how it is now, and I think Tuesdays and Thursdays are going to be my favorite days of the week. Those are the days when we don't have anywhere to go unless we want to, and we're home alone together all day long. I was a little nervous about that idea at first because she has always had at least one of the other kids here to entertain her, but she's been doing great so far. She's realizing that when they're not here, she can play with whatever she wants to, sing as loud as she wants without anybody telling her to be quiet, and (when I let her) watch whatever she wants to. Or eat tortilla chips for breakfast in a t-shirt and diaper on the floor by the front door.

This afternoon Raya walked…

Exciting and not exciting

Some exciting things happened this weekend and some not-so-exciting things happened, so we'll start with the exciting. Then I'll move on to the not-so-exciting, but not wanting to leave the post on a sour note, I will put a positive spin on it and try to find the silver lining because that's what I do to keep myself from getting angry over things I can't really do anything about. Moving on...

Exciting. I was trying to remember how long it has been since Raya ate anything that even vaguely resembled bread. Her wheat allergy was diagnosed at the end of September last year, so she definitely hasn't had any bread since then. The closest thing was probably the one package of gluten-free crackers I found at Sprouts in December or January shortly before we had to stop letting her have food completely. So yeah, almost a year without bread is a long time. I was honestly starting to wonder how in the world I would be able to find enough ingredients that could be blended toget…

Tubies in School Series: Back-to-school Prep & Emergency Kits

I think I've mentioned recently the stress of preparing to send a child with medical issues to school. Last fall when Raya first started preschool, I thought my head was going to explode. I did the best I could to prepare for her first IEP meeting and explained as thoroughly as I possibly could to her teacher & the school health aide what Raya's main medical concerns were, how to operate the feeding pump, and what to do in case of a G tube-related emergency. I prepared the very best I could, and overall things went pretty well but there were still some frustrating moments throughout the year.

This year, the preschool program has moved to a brand new (and HUGE) facility inside the new middle school (which sounded completely unappealing to me but turned out okay) and we have a new teacher and a new health aide. I really wanted to get off on the right foot this year, so I prepared a little differently and probably even a little better than I did last year. Perhaps enough to m…

And on the second day of school...

The second day of school was just plain lovely. Except for the part where I woke up with the same headache I went to sleep with last night. And the part where a certain boy who has been banned from leaving his room until 6:30am was in my room bugging me about what he should pack in his lunch at 6:20am, at which time i do not have the capacity to care what anyone eats for lunch. It rained for a good part of the day, starting at who knows what hour of the early morning, and it was only about 75 degrees outside when the kiddos got on the bus. They are such Arizona kids. When they looked outside & saw that it was raining, they immediately assumed that it was cold and insisted on wearing jackets. I laughed at them.

Raya doesn't go to school on Tuesday & Thursday so we went over to a friend's house for a little while so I could help her with a little blog project, and then we came home and had lunch. Even by midday, it was still BEAUTIFUL outside so we opened the front door …

First Day of School 2013-2014

Summer break is officially over! All four of the kids started back to school today. They were all just beside themselves with excitement but especially Kaida, who basically had to wait a whole extra year to start kindergarten because of when her birthday falls. We could have started her last year but opted to wait, so she has been chomping at the bit for a loooooong time now!

We did a lot of the preparation on Sunday evening so that we could avoid a hectic morning on Monday, and it definitely paid off. The kids packed their lunches Sunday night and laid out clothes for Monday morning. We had family scripture study (which we don't do often enough) and Donny gave each of the kids a father's blessing, which is a tradition both of us grew up with. Father's blessings are for the purpose of giving each child an individualized blessing with special words of guidance, love, strength, and encouragement as they start a new school year. I always get one too because I need it just as m…

Meetings and paperwork

The process of getting ready for school is winding down and Monday will be here before we know it. I've been a little stressed this week over preparing for our meetings with Raya's teacher and with the school nurse & district respiratory therapist (the one that does all the feeding tube training for the school nurses). I wanted to make sure we had everything typed out, written out, printed out, copies made for everybody, etc. so that eeeeeeeeeeverybody is on the same page about everything. We met with Raya's new preschool teacher on Wednesday and were able to explain Raya's main issues that will affect her at school (food allergies and tube feeding at school) and explain what frustrations we had with school last year that we're hoping to avoid this year. The meeting went well and Raya is VERY excited to get to go back to her new classroom on Monday. The school that the preschoolers will be at this year is brand new and still being worked on so hopefully things …