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Showing posts from October, 2014

Happy Halloween!

Tinkerbell is a little under the weather today. Enough so that she didn't go to school this morning and we had to reschedule her out-of-state motility testing that was supposed to be next week. Nobody wants to do anesthesia on a kid with a cough/upper respiratory infection. Baby sister isn't feeling good either. She has croup and was having a rough day Thursday so she's on an oral steroid that seems to be helping. (but baby 'roid rage isn't fun for anybody) Raya also has cellulitis on her arm again just like she did in July, so she's on another 10 day round of antibiotics for that. Blech. In spite of it all, we got everybody dressed up for Halloween and they all had fun trick-or-treating. In short sleeves. Halloween is one day that we especially love living in this very warm place. :)

NASPGHAN Conference

Mommy is on vacation. I haven't heard a feeding pump beep in 2 whole days. Do you know how long it's been since I went 2 days without hearing a feeding pump beep?! I don't. I miss my babies dearly (and my wonderful husband who isn't scared to be left home alone with 5 kids for 3 days) BUT I am where I need to be right now.

I had never heard of NASPGHAN until my Feeding Tube Awareness colleague, Traci, mentioned that she would be going to their conference in Atlanta. NASPGHAN=North American Society of Pediatric Gastroenterology, Hepatology, and Nutrition, by the way. We (FTA) deal primarily with the pediatric tube feeding population, so this conference is really the perfect opportunity to share our organization's purpose with the right demographic. We flew in early Thursday morning and have spent several hours in the last 2 days in our booth at the exhibit hall talking to hundreds of GI doctors, nurses, and dietitians. The response to FTA has been extremely positive…

Back to a G

This whole GJ thing just did NOT turn out like we had hoped it would. In the wee hours of the morning last Friday, I woke up to turn off Raya's pump and saw this:
A quick whiff confirmed my suspicions that there was formula in that bag, not just bile. (yep, I sniffed it. what else can you do.) I emailed the GI nurse at about 4:00 in the morning to let her know what was happening and ask what they wanted me to do and then went back to sleep. As I was getting Raya buckled into her car seat to go to school that morning, I saw this:
And that, my friends, is formula going into the J and coming right back out the G. That meant that her J was completely displaced and had coiled all the way back into her stomach. That explained why she had been feeling so crappy Thursday but it was a HUGE disappointment. When she had the GJ when she was younger, we went nearly 10 months without ever having a J dislodge, and now she's had 3 in less than a month. It is discouraging, especially knowing …

Why I haven't posted anything this week

1. busy filing a claim with secondary insurance from an urgent care visit over the summer at an urgent care where her primary insurance is not accepted but secondary is, but since primary insurance denied the claim, they refused to bill secondary so now I'm having to do it for them and hope that the secondary insurance takes me seriously since nobody there seemed to think it was kosher for a patient to file a claim

2. trying to convince school district that October is too early to do a 3 year reevaluation (never mind that it's only been 2 years) for the kindergarten transition process, which, if she happened to not score within the qualifying range, she would be booted out of preschool as of Thanksgiving, and to convince them that we do not in fact HAVE to do said reevaluation prior to the IEP meeting that is due at the end of the month, and should actually do the IEP meeting first and wait until February or March to do the reevaluation

3. trying to stay on top of making sure …

Fall break

Today was the last day of Fall Break for our kiddos. I know, I know, what the heck is fall break?? That's what I said too when I first moved to this state. Then once I had kids in school, I soon understood the value of having a week long (plus a day) break in October once the weather has cooled down to the low 90s. It's a beautiful thing.

I am not the most fun mom in the world. To be honest, I spent a lot of our fall break making phone calls to insurance companies, doctors' offices, and other providers. I also spent a lot of time on the computer and trying to catch up on things that I got behind on when we spent 2 impromptu days at the hospital the week before. There was a lot of housework that needed to be done, a couple of therapy appointments, and all of the kids had different things they needed to practice (i.e. piano, karate, etc.). Oh, and I spent a lot of time awake in the middle of the night too, for one reason or another. Mostly to connect a Farrell bag to a yucky…

The continuing GJ tube saga

When Raya's GI and I talked in July about switching back to a GJ tube, I knew there was a possibility that we could run into some of the same problems we had when she had one before, but I really hoped we'd avoid most of them. We did at first. I was pleasantly surprised how simple the transition was in comparison to her first go-round with a GJ tube. {i.e. vomiting copious amounts of bile, 15 days in the hospital, weight loss, the need for constant draining of her stomach & IV fluids, 24 hour a day feeds, etc.} At my request (meaning I begged and pleaded), the interventional radiology (IR) doc agreed to place an AMT G-Jet instead of a MIC-KEY GJ like she had 4 years ago.

About 3 weeks into having the G-Jet, I accidentally clogged the G port when a piece of food she had eaten got stuck in the G port and then got impacted with the dose of her probiotics. After much trial and tribulation, I got the clog cleared. Bullet dodged. We did not have to replace it that time. About a …

To see you be brave...

Six years ago this weekend, I did something that I had previously never imagined I'd be able to do. I ran the St. George Marathon in Utah. Honest to goodness, I did not truly believe that it was humanly possible for a person to run for 26.2 miles in a row until I crossed the finish line that day. In the 6 years since then, I have thought back on that marathon time and again as I have gone through other challenging life experiences.

This past Sunday, one of the lessons at church brought back vivid memories of my marathon experience. The lesson was based on a talk from the April 2014 LDS General Conference, titled "Bear Up Their Burdens with Ease" by David A Bednar. It's a great talk that I have read and re-read several times in the past few months. During the lesson, we discussed how drawing ourselves to Christ does not remove our burdens, but rather gives us the support that we need in order to bear what we are asked to bear.

As my thoughts drifted back to the marat…