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Showing posts from August, 2014

Pictures from the week

I'm a little behind on things so I'll just catch up with some pictures. :)

Last Friday (8-22) after school, I decided to make a trip to Ikea with the two little girls. I've been doing some rearranging and organizing around the house and I needed some square bins to go in a shelving unit, so I loaded them up and we headed out. Since I actually planned on buying stuff, I knew I would need space in the cart for stuff and wouldn't be able to put a car seat in it, and I also knew that I wouldn't be able to push a stroller and get the things we needed, so I put Piper in the wrap and crossed my fingers that Raya would have the energy to walk the whole time.

I love Ikea. It's one of my favorite stores to just walk around in and look at everything. Raya seemed to enjoy it too. She didn't want to ride in the cart for most of the time we were there. She just wanted to walk around and touch EVERYTHING. It took us forEVER to walk through the store because every time I t…

Heavy stuff

(This is one of those keepin' it real posts, and I can tell you right now that it's not going to be all warm and fuzzy. I'm not complaining or looking for sympathy or attention, I just need to get things off my chest and talk my way through what I've been dealing with lately.)

When Raya was a baby and then a toddler, her medical issues were always at the forefront of whatever was going on with her. Managing her feeding, therapies, medications, appointments, vomiting, and all the other day-to-day things was all-consuming for me and I have recently realized that I have not spent much time in the last 4 years thinking about anything beyond the nitty gritty medical care. All of our focus has been on working towards what has always been the ultimate goal of resolving her GI issues and getting her to eat orally and eventually remove the feeding tube. When you have a child with a feeding tube and not much in the way of a diagnosis, that is the easiest and most obvious thing to…

A miracle we all take for granted

I tried to think of some grand way to preface this post that would do justice to how I'm feeling but I'm drawing a blank. Instead, I will just show you a picture of the everyday, ordinary, but still extraordinary miracle that happened at our house this week.

This was how my last 2 babies felt about eating solid food:


And Raya:

Piper is completely and totally the opposite. She could not WAIT for me to put that spoon in her mouth! It was a momentous occasion for both of us. I waited until the kids were all at school so that it was nice and quiet with no distractions. One reason for that was that I wanted it to go well and start off on the right foot, and I knew having the other kids around would make it harder. The other reason was that I really wanted to have the experience of feeding her her first solid food to myself. I admit, that was a little selfish of me, but having been robbed of the joy that I now realize can be found in having a baby willingly and successfully …

lots of updates. and some late-night emotional ramblings.

I didn't mean to go this long without updating but it's been a really busy couple of weeks. The kind of busy where as soon as I wake up in the morning, all I can think about is the fact that I already want a nap and I know I'm not going to get one.

So we've had a lot of appointments and we have more coming up. Last Wednesday, we saw Raya's neuro. But first, we waited for a long time. While we waited, Raya's anxiety level got higher and higher and higher. I ran out of tricks to amuse her with so I let her take selfies with my phone. There are about 75 of these gems on my memory card now:
Each time she took a picture and it popped up on the screen, she let out a loud, cackling belly laugh. She has the best laugh!

To put it briefly, the appointment went fine but wasn't the most feel-good, validating appointment. It's resident season. We've had residents shadowing specialists & I've felt like a lot of the attention is focused on explaining thin…


Floundering. I like that word. Mostly because it's a kind of fish, and I like fish, but also because it's a pretty good description of how I feel about trying to deal with Raya's medical issues. In the last 4 1/2 years of tube feeding, I have become somewhat of an expert on feeding Raya. I have learned what to expect from her body and I've gotten pretty good at managing the day-to-day stuff. What I have not yet figured out how to do is align my expectations with reality. It's hard to do that when you have no idea what reality is going to be on a long-term basis.

How long do we continue to do the same things we've been doing? I have always hoped and believed that we will at some point be able to get Raya to a point where she can eat and drink enough to not need the tube anymore. What if that's not what her body is capable of though? And how long do we wait? At what point do we accept that tube feeding will be a long-term thing for her, and how long is long-t…

Clogged feeding tube

This post should make anyone who has ever felt dumb for making a mistake with their tube fed kiddo feel better. **Disclaimer: If the feeding tube you are in charge of caring for ever gets clogged, talk to your doctor about how to unclog it!**

Our day started out pretty good yesterday. We got the big kids off on the school bus and then I got Raya all dolled up and ready to go to school. She is LOVING that she doesn't have to take her feeding pump to school and went on and on about how much she loves just wearing 1 backpack.

As soon as she got home from school, her respite provider came and I got her pump ready and her midday doses of meds and her probiotics. I had a whole list of things I needed to do while her respite provider was here, so I plugged her in to the pump and started her feed and then I went to flush her G port so I could do her probiotics. When I was connecting the G extension, I noticed a fleck of something bright orange in the stem of the GJ tube. Pretty sure it wa…

The final countdown...

We are about 9.5 hours away from the first day of school. Am I ready? Yes. Are we prepared? No. No, we are not. The big kids are 99% ready, I just have to make sure everybody eats breakfast, wears dress code-approved uniforms, and has a good lunch packed. And drop off Benadryl & Epi Pens and the corresponding paperwork in the health office for the boy. Raya is a different story though.

I can't even express how grateful I am that Raya has the same teacher & classroom aide this year and that the health aide is the same person as last year too. We have made some big changes this summer (namely switching to a GJ tube and all that comes along with that) and it would be SO much harder to explain everything to brand new people. I'm expecting a mountain of paperwork this week since we have ZERO of the health forms that we had to have filled out & signed last year. I take that back, I do have a copy of the anaphylaxis emergency plan that I planned on having the allergist si…