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Showing posts from February, 2014

Our most eventful GI visit yet

Raya was supposed to have a GI follow-up on February 3rd but decided to get hospitalized instead so she could get out of it. (really I'm sure she would have preferred the 1 hour GI visit) We had to reschedule it but couldn't get in before baby sister was born so we had to wait until yesterday. I'm SO glad I scheduled it in the afternoon because I really haven't seen the hours between 9-noon since the baby was born. I just plain can't stay awake then and having a newborn gives me an excuse to sleep so I sleep. :) While I slept yesterday morning, Donny took Raya to her OT & feeding therapy appointments. I love that she gets therapy and I love her therapists but I was ready for a break. :)

Anyway, I figured that since Donny was off of work, it would be a good idea if he came with us since he's never really been able to go to GI appointments. Not to mention that 12 days post-baby, I wasn't sure how much I'd feel like wrestling Raya all by myself. She get…

Pot, meet Kettle

Oh, this child. She is quite a piece of work, let me tell you. The things that have been coming out of her mouth lately have left us speechless on many occasions. All of a sudden, she is the grammar police. Half of her sentences start with things like, "By the way..." and "Um, Mommy, didn't you know..." Neither of those things have nearly the impact in print that they do when they roll off the tongue of a sassy little redhead. Of course all of this is to be expected from a child who insists on sleeping in kitty cat ears, right?

She has been pretty funny with her baby sister. People keep asking me what Raya thinks of her and if she likes her. Truth be told, Raya does like her, but she doesn't have a whole lot of time to give her attention because she's so busy with all of the important things that 4 year olds do, like blowing bubbles, watching the same 3 episodes of Jake and the Neverland Pirates for the millionth time each, and playing with toys. 

Every …

Special needs moments and trying to remember "normal"

It's been really great having a new baby in the house again. {I'm so, so tired though...} She's only been here for 2 days but I ♥ her and I wish I could just lay around and snuggle her all day long every day. 

We've had some funny moments that pretty much just illustrate how having Raya has shifted the way we all think. For example, the first time that Kaida saw her umbilical cord stump, she stared at it for a while and then made some comment about her tube.  (i.e. she thought the cord was a G tube) 

Today, I was using the breast pump and Raya walked in and wanted to know what I was doing to my tummy. I told her I was using a pump to get milk for baby Piper. She got her confused face on and said, "Um, that is NOT the same as MY pump, is it?" Um, no, no it is not. :) 

I had to take Piper to her pediatrician appointment this afternoon and Raya had to come with us because there was nobody home to watch her. As I was getting Piper undressed, Raya said, "Mommy, …

Baby Sister

I had started working on a FTA Week blog post for Friday while Raya was at school. Then plans changed and we spent the afternoon doing this instead:

I left Raya with her grandma at therapy and went to my weekly check-up. Then I went back to therapy, left the car keys with Grandma, and Donny picked me up to head to the hospital. About 3 hours later, baby Piper made her arrival! So far, Raya and all the big kids absolutely adore her!



FTA Week 2014--Day 5: Hopes for the future

Today's topic: What are your tube feeding hopes and dreams for you or your child in 2014? What successes do you want to build on?

 To be honest, sometimes it's hard to feel like spending the energy thinking about hopes & dreams for the future with a medically complex, tube fed child. (and probably more so at 39 weeks +6 days pregnant...) It is also difficult to set expectations when you have no idea what to expect and so much of the situation is beyond your control. Early on, my only hope for her was for everything to be "normal." I wanted her to stop needing medications to help her be comfortable, and I wanted her to eat and drink orally so that she wouldn't need a feeding tube anymore. I thought that it was realistic to expect for that to happen within the first couple of months, but as time went by and things got worse despite everything we were doing to try and make it better, I had to come to terms with the fact that it was not. At least not then.

I thin…

FTAW 2014--Day 4: Coping

Today's topic: Share how you and your family cope with the challenges of life with a feeding tube. What has made the journey easier?

Without a doubt, I can say that there are at least 5 things that have made life with a medically complex child do-able. 

1. Education
I can't say enough about how important it is to learn everything there is to know about whatever medical problems you or your loved one are facing. (and Wikipedia doesn't necessarily count as a reliable source) Knowledge empowers you to become an expert on your child's health. I have been a stay-at-home mom since our first child was born almost 11 years ago. I've spent more time with each of our kids than anybody else has. In Raya's case, I think I've spent more time with her alone than I was ever able to with any of the other kids just by virtue of the number of appointments & hospitalizations she's had. When you spend nearly every waking moment of your child's life with them for the…

FTA Week 2014--Day 3: Overcoming Obstacles

Cue another long and rambly blog post. :) Today's topic is: Show how tube feeders can do what they love to do. Share what obstacles you or your child have overcome!

Raya has overcome a lot in the past 4 years. Some of it is directly related to tube feeding and some of it is an indirect result of the complete nutrition, hydration, and helpful medications she's been able to get through her tube that she would not have otherwise gotten. Here are a few obstacles that come to mind:

Failure to Thrive
FTT: one of the ugliest medical terms to fall on a mother's ears, no matter how accurate it may be at the time. Raya did not take long to fall into the category of FTT/poor weight gain. When you're spitting up and throwing up more than you're keeping down, it's very difficult to gain weight. When you're not gaining adequate weight as a newborn or infant, it's very difficult for normal brain development and physical development to take place. Babies who remain in …

FTA Week 2014-- Day 2: Feeding on the Go

Today's topic: Share your tips for feeding on the go or in public! Where have you tube fed? Talk about the most unexpected places you've done tube feedings. 

One of the things that I was uncertain of in the very beginning before we left the hospital with the NG tube was how difficult it might be to leave the house with Raya attached to her feeding pump. Or if it would even be possible given that the pumps they'd been using at the hospital were large, clamped to IV poles, and didn't seem to hold much of a battery charge when they were unplugged from the outlets. (but we can talk about the crappy pumps hospitals use another day...) When the rep from our home health supplier came to drop off the feeding pump we'd be taking home, I realized that we would probably have some mobility due to the fact that the pump was smaller than the hospital pump and he brought a backpack along with it. That pump and backpack did make it possible for us to leave the house and be gone …

Feeding Tube Awareness Week 2014- Day 1: Share your story

Feeding Tube Awareness Week (aka FTAW) is upon us again. It has been a bit of a whirlwind getting ready for it this year as pretty much the whole FTA staff has some kind of upheaval going on right now but we are very excited that it's here. As usual, there are daily topics to help bring light to different aspects of tube feeding. (topics can be found here) The official FTA video was just released last night and I absolutely LOVE it! My friend and colleague Hillary did all the hard work on it and the rest of us helped out where needed. It is a beautiful tribute to the small and simple device that keeps all of our children alive and well. Here it is:



Due to being in the hospital all week with Raya and trying to get ready for a baby that's due on Friday, I'm bummed that I didn't get a video made this year but I thought I'd share the last 2 that I made for previous FTAWs.
2012:


2013:

Raya FTAW 2013 from Brandis G on Vimeo.

Today's topic is: Why do I/does my child have a…

The rest of the hospital stay

(I started this at the hospital but was too tired to finish it there and it's too much of a pain blogging from my phone & the iPad so I'm finishing it now that we're home and I've forgotten what happened when. :)


Today (Tuesday) was better than yesterday but we're still at the hospital. Aside from having to change wet bedding twice and having a lousy blood draw at 1am, we had a better night's sleep.
For some reason, nobody ever listens to me when I tell them that they won't be able to draw back enough blood from her IVs to use for labs. All they needed was 1ml but they couldn't get it from the IV. "But it flushes great! I don't understand..." Yep, they always flush great but you'll never get enough blood for labs from them. 


We had to get her up at 5 to change sopping wet bedding and realized she was running a fever of 103.6 again. That was really disappointing because I had expected her to be past the fevers by today and that w…

The H word...

I'm not going to say the actual word, but it looks like we will not be sleeping in a plastic covered adjustable bed tonight. Yay!! We are more than ready!

Unexpected hospital admission

We've had a good, long run between unplanned hospital stays but all good things must come to an end. Last week I noticed that Raya's wet diapers had a strong and unusual stink to them. I chalked it up to a decrease in her oral fluid intake due to the cough she'd had. I increased her g tube fluids and her stinky pee went back to normal. Thursday she was laying around more than usual and in the afternoon I realized she had a low fever. It went away after she went to sleep but she had a fever again by the time she woke up on Friday. I kept her home from school and canceled therapy. Her temperate was up and down but for the most part she was still acting pretty normal. On Saturday afternoon her fever came back and seemed higher to me. Add the evening went on, she got hotter and hotter. Later that night we gave her Tylenol and a bath and that cooled her off a bit. At one point I had taken her temp with the exergen forehead thermometer and the stupid thing said her temp was 107.…