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Showing posts from February, 2013

Rare Disease Day-- 2-28-13

If you happen to have any friends on facebook with rare diseases or whose children have rare diseases, chances are you've seen this picture. (well, with a different face in it, of course) I will admit that as Rare Disease Day approached and more and more of these have popped up as profile pictures on facebook, I've struggled a bit. Notice the quesion marks across the "jeans for genes" ribbon? Most people have a diagnosis to put there in place of the question marks. We don't. There is a list on the global genes project's website of approximately 7,000 diseases that are considered to be rare in the United States, meaning that they have an occurrence of less than 200,000 people. SEVEN THOUSAND. My question is, why haven't we been able to identify one that fits Raya yet? (Ok, well she did have c. diff a couple times and that happens to be on the list, but that SOOOOO doesn't count...)

Until Raya was born, I had a very limited and concise view of the medica…

Tubie Momma Moment

If you've ever used the plastic bag from a pump set to put your leftover orange rolls in because you're out of Ziploc bags, you might be a tubie momma...

Oh, what a frustrating morning...

Most days, {aside from the whole feeding her "medical food" with a machine through a piece of silicone implanted in her belly thing}, I feel like Raya is a pretty normal kid. Then we have mornings like this one and I feel like I've been slapped in the face with reality again. I think my sister described it best when she said that Raya is wired differently. In so many ways, she's just a 3 year old, but then there are the other things that remind me that parts of her body & mind don't function the way that "just a 3 year old" should function.

Last night, she was feeling crappy thanks to the cold she has caught. She looked pretty pathetic and felt like snuggling on the couch, so we did.
See what I mean? Pathetic. Poor girl didn't feel good. No fever, no cough, no runny nose, just a stuffy head and her cheeks were bright red for no real reason. So we snuggled on the couch because she was comfortable, and it was a good snuggle for both of us.

This mor…

Vanilla Elecare

Raya has never been a formula drinker. The reason she got an NG tube at 2 months old was because she was not tolerating or growing on breastmilk so she needed an easy-to-digest, relatively hypoallergenic formula. It smelled (and I'm sure taste) absolutly horrid, so she refused to drink more than a small portion of each of her 8 daily feeds. When she switched to Neocate Infant 2 weeks later, she drank it a little bit better but was having so much reflux, vomiting and general discomfort that she still just wasn't interested in drinking formula. We have never pushed her to drink her formula because we have felt like there was no benefit in fighting to get her to drink unpleasant tasting formula when there's a perfectly good tube to feed it to her through, and that the pushing from us should be towards eating solid food. Not everyone agrees with that sentiment, including the dietitian who lectured me for most of an hour about not putting blenderized food through the G tube (wh…

More alternative uses for medical supplies

It's time for another installment of alternative uses for medical supplies, by Raya and siblings. (some authorized by Mom, and some NOT authorized by Mom)

Some of our previous alternative uses included:

I'm sure there have been others but those are the ones I can think of right now. Which brings us to the recent ones. This morning, I slept in and I heard the kids making all kinds of noise in the living room. It wasn't the usual noise but sounded like their super-cheesy "let's do teamwork" kind of noise. I walked into the living room and they had built a "stage" out of boxes of medical supplies so they could do performances to their Disney station on Pandora.

They had a great time singing & dancing. Of course Raya just wanted to use the stage as something to jump off of. Oh, and speaking of singing, check out Kaida's microphone:
Yep, that would be a carton of Peptamen Jr. They're so resourceful.

After I had them clean up their stage, I went …

Why I use a scale to measure & mix Neocate

We recently switched back to powdered formula (Neocate Jr) after being on ready-to-feed Peptamen Jr for 2 years. When we used powdered formulas before the Peptamen, we always just used the scoops inside the cans to measure the powder with. Raya is our 4th child but she's the first one we had ever used formula with, so I don't think it even occurred to me during the first year of her life that there was another way to do it aside from the scoop. This time around though, we happen to have a digital food scale thanks to our brief adventures with counting oral and blended food calories, so I decided to do a little experiment. {note: I'm not saying that either way is right or wrong, I just made an observation that I thought was interesting and wanted to share the results. this could go for any powdered formula too, not just Neocate.}

When we started using Neocate again a few weeks ago, I was curious how accurate the scoops would be so I got out the scale to weigh the powder.

I st…

What to eat when you can't eat

The last 3 weeks have been challenging for Miss Raya. She has been off of all food except for Smarties and DumDums. After spending so much time trying to get her to eat, taking food away has felt mean and wrong. When all you can have is Smarties, DumDums, water, and ice, eating gets pretty dull. We don't know how long she will be on an elemental diet and we don't want her to lose ground with her oral motor skills or lose interest in eating, so we've been trying to get creative with what we have to work with. (she is not interested in drinking Neocate, nor are we interested in trying to make her)

There are a few things that we are not doing at all right now:
No eating out with the kids. Back when she didn't care about food and back before we knew about her food allergies, she was content to sit at the table and play with crayons, drink water out of a 60ml syringe, and nibble at ice cubes/tortilla chips/fries. Now that she has gotten used to nibbling at food when we're…

Raya's new video

I had planned on making a new video for Raya for Feeding Tube Awareness Week this year but because I was so busy working on the official video for the Feeding Tube Awareness Foundation, I didn't have time to get it done in time to post it on the first day of FTA Week. Or the second, third, fourth, fifth, or sixth day. I did finally finish it on Sunday and posted it on facebook but I haven't shared it here yet.

As I started thinking about what direction I wanted to go with the video, I decided that I needed something more upbeat and peppy this time. I need something that I can watch when I start to get stressed out because of the pressure I feel from outside sources in regards to Raya. Every parent feels pressured to make sure that their kid measures up to everybody else's. Being the mother of young children often feels like a competition. Whose kid learns the ABCs first, whose kid is potty trained first, whose kid can read before kindergarten, whose kid can start kindergart…

Another FTA Week comes to an end...

Well that was a heck of a week. It's been pretty exciting to watch the Feeding Tube Awareness facebook page grow so much so quickly. I'm not sure what the exact numbers are but we grew by close to 1,000 people over the past week. Very exciting to see that more people are hearing abou Feeding Tube Awareness and connecting with each other.

It was a pretty exhausting week for me. The ASPEN Conference was a great experience but after spending the last 4 months in my desk chair taking really intense online classes, my body is not used to that much walking and standing. To make things more fun, Raya has had a rotten week of sleep. Monday night, she was up from 10:00 to midnight crying. Reflux woke her up and then she couldn't get back to sleep. We finally fell asleep on the couch together shortly after midnight. I didn't take her to school Tuesday morning because we were both too tired to get off the couch in time to get her there by 7:45. (Side note, every time I connect her…

FTA Week 2013: Day 7, Humor

Sometimes you just have to laugh: Tubie Humor
We all have those funny tube feeding moments. What is yours? Share your funny tube feeding stories!

“The only way to get through life is to laugh your way through it. You either have to laugh or cry. I prefer to laugh. Crying gives me a headache.”
Marjorie Pay Hinckley

I was raised on a dairy farm in Idaho. There isn't really much about dairy farming that's funny, but I learned from a very young age that having a sense of humor in the face of large amounts of bodily fluids (bovine or otherwise) can keep you from being thoroughly disgusted. Like the time my brother decided to throw a giant chunk of what he thought was dry cow poop at me while I rode past on my bike, and it turned out to be not dry cow poop, and it was the one time that he happened to have perfect aim. At the exact moment that the flying poop hit me square across the face and knocked me off of my bike, it wasn't very funny but even now I can't keep from ch…

2013 FTA Week: Day 6, Outreach

Today's topic is Outreach: Spread the Word!

How are you spreading the word about Feeding Tube Awareness Week? This is a great day to give a school presentation or tell docs, nurses and therapists about Feeding Tube Awareness Week and share information about it.

I really could split this topic into 2 posts but I don't want to so this will just be really long. If you've read the blog for any length of time, that should come as no surprise. Last year was our family's first Feeding Tube Awareness Week. I had come across FTA on facebook shortly after FTA Week in 2011, so we missed out on that one. Last year though, we were VERY excited. The older kids and I had decided that it would be fun for them to do short presentations about feeding tubes for their classes at school. I emailed their teachers a couple weeks in advance and they were completely on board with the idea. I put together a 3rd and 1st grade level version of the presentation, the kids practiced several times…