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Showing posts from June, 2014

Pump drama. To go along with our G tube drama.

We have had some feeding pump drama the past few weeks. It wasn't totally the pump's fault but the Reader's Digest version is that since we started using the new glow-in-the-dark extensions, we have had major issues with pump accuracy. This is the same thing that happened last summer/fall when one of the AMT reps that I had met at the Oley conference last summer sent us one of the GITD extensions to try out. Initially, the glow factor was cool and the kids and I were all a bit excited about it. Let's face it, glowing in the dark is about the most exciting thing that's ever happened to enteral feeding supplies. It wasn't long though before my love for the improved design of the medicine port far surpassed my excitement about the novelty of the glowing pieces. We had long since stopped using Y port extensions completely because the benefit of having a med port there was not worth the trouble of trying to keep it closed. After a few days of using it, I noticed tha…

Being happy and staying busy

The week before school got out, we had a little family meeting and made lists of things we wanted to do this summer. It was a pretty long list, and we made it with the goal in mind of doing things to help us learn and grow. We also made it with the understanding that we may not do everything on the list, but at least it gave us a lot of ideas to choose from. I am happy to report that so far, we are doing pretty good with knocking things off of that list. I feel at times like I am running on nothing but fumes, but I am happy.

I decided that we would need to stay busy over the summer in order to keep everybody from fighting and bothering each other, so that's what we've tried to do. Really, it doesn't take much effort with all the things that have been on the schedule. I feel like we've been constantly on the go for the last month since school got out. We've gone to the summer movies, done lunch at one of the schools that serves lunch over the summer, gone to the li…

Swimming lessons!

This week, the kids had the opportunity to take swimming lessons from a young man we know from church who is working to earn money this summer to go towards paying for his mission this fall. Swimming lessons in Arizona really stink when you're the mom that sits out in the 105+ degree heat for 90 minutes but thankfully it was at a friend's house and there was shade. I've never seen kids more excited to do swimming lessons! I feel kind of bad that we've mostly skipped out on the swimming lessons but it was just more than I could handle when they were younger and Raya was a baby and my life revolved around her appointment schedule and keeping her healthy. (and minimizing the amount of public vomit)

Anywhoo, fast forward to 2014 and I have a couple of kids who are decent enough swimmers that I'm not afraid to turn them loose at the neighborhood pool but also need swimming lessons and are too old for their skill level at the town pools, one that desperately wants to be …

G tube drama

We've had some G tube drama around here lately. We replaced Raya's tube on May 5th, with a shiny new AMT Mini One button, complete with new glow-in-the-dark feed port. Raya thinks it's pretty awesome that her tube glows in the dark! It doesn't really do much for me as far as helping me connect in the dark, which is the intent behind the new GITD tube & extension sets, but she likes it so whatever. :)

Unfortunately, my frustration with the Mini One is growing. We switched from a MIC-KEY button to a Mini One in April 2012, after way too many accidental pull-outs with the MIC-KEY. The balloon shape of the Mini One made it MUCH more difficult to pull out, and the smaller exterior button kept it from getting caught on things and pulled on. Overall, our experience with the Mini One has been great, but I'm reaching the limits of my patience with the one thing I don't like about it. For whatever reason, every single Mini One button we have ever used has ended up wi…

Just keep swimming

I have started this blog post about 4 times now and ended up having to delete it all and start over because I took too long and never finished. Maybe this time will be different! We are on week 2 of summer break and so far, we're doing pretty well. We haven't stayed on a perfect schedule but the kids have done pretty well completing their daily tasks and helping with household chores. Heck, we even had a bathroom cleaning lesson last week. Some of them were less thrilled about that than others but I told them that when they know what's expected of them and they know how to do what's expected of them, it eliminates frustration for all of us.

We've had some weird things going on with Raya, and especially with her sleep patterns. I think she has been awake more at night than I may have realized. She was mad at me for something on Saturday morning and was laying on the floor next to the couch throwing a fit. I was laying on the couch with a sleeping Piper, and I don&#…