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Showing posts from April, 2012

My baby is a big girl

Raya is turning into such a big girl. I've realized lately that by the time the other kids were her age, there was already another baby or almost another baby. As soon as you bring home a new baby, the older sibling all of a sudden looks huge. This time around there is neither but Raya suddenly looks and acts like a big kid anyway. She tries to copy everything the big kids do and say. She's bigger than all 3 of the other kids were at her age and it hurts when she plops down on top of you or steps on your feet. I want kidding when I said before that she's closing in on Kaida. They're only about 3 pounds apart now. I laughed when I saw them next to each other a few days ago because I realized that they were both wearing Kaida's 3T shirts and Raya's 24 month pants. She doesn't want help with anything anymore and protests when you try to help her. It adds on a lot of prep time when we're getting ready to go anywhere because she's not capable yet of…

GI Visit & Tubie Friends Delivery

We had a lovely visit with Raya's GI doctor yesterday. For whatever reason, Raya was having a terrible day. She was clingy and whiny and fussy all day long. Literally all anybody had to was look at her and she would start crying. She took a nap but I had to wake her up to go to the doctor. All the way to the appointment, she cried and screamed. When I let her help me carry the Tubie Friends that we brought with us into the clinic, she perked up a little. That lasted until it was time to take her dress off and get on the scale and then she had a meltdown.
Not much to my surprise, Raya has grown a LOT in the last month. At her last weight check 6 weeks ago, she weighed 12.835kg (28 lbs 4.7 oz). Yesterday, she weighed an unbelievable 13.63kg (30 lbs 0.8 oz). She gained a whole kilo, which is 2.2 lbs!! If she was an orally eating child, that would be very exciting but in this case, it means that we overcompensated when we increased her calories a couple of months ago. We've overfed…

To the parents of new tubies

Lately I've been talking to several moms who are brand spankin' new at this feeding tube business. Hearing them talk about the feelings they're having, the things they're worrying about, and how exhausted and overwhelmed they feel has made me think a lot about how I felt when we were new at this. It was HARD. To all of you parents who have babies, toddlers, or even older children who have brand new feeding tubes, here are some things you need to know:
1. You are exhausted, you feel overwhelmed, you feel inadequate, you don't feel like you know what you're doing, you're worried about your baby/child's future, you're tired of vomit, and you wonder if any of this will ever get better. IT WILL! Your child's problem will not go away overnight. It may not go away for months, years, and maybe not at all, but you WILL find a routine. It will change often, but you will adapt. Medical conditions may stay the same, but YOU will change. You will learn more e…

Raya's first ice cream cone

The kids and I worked hard all day today on our list of chores. Even Raya had work to do:


I figure it's about time for her to start putting her own medical supplies away, right? :)

Since we got almost everything on the list done and it's been so miserably hot today, we took the kids for ice cream. We weren't going to buy Raya one but we knew she wouldn't be content to sit and watch the big kids eat theirs. Usually we just let her have tastes of what we have. She had no idea what she was talking about but she was very excited about getting an ice cream cone just because the big kids were. :) We bought her one, admittedly to avoid her throwing a fit. Donny ate a bit of it to keep it from spilling everywhere and then handed it to her.



She said "Eye fweem!" and had a lick followed by a surprised cold face. :) She enjoyed the little bit of it that she had but Donny scooped most of the ice cream out. He also took a big bite out of the cone to show her that it was …

From MicKey to Mini

Raya has been a member of Team MicKey since October 2010:

When we had her G tube surgery follow-up appointment, I had picked out a Nutriport G tube. It had several features that appealed to me after having dealt with a Bard button for a month. (Bard buttons don't have a locking mechanism to keep the extension tubes from coming unplugged, which equals a LOT of messes, especially when it's in the stomach of a 9 month old who gets fed 22 hours a day.) That plan was foiled when Raya started having gastric bleeding and had an endoscopy with a failed attempt at a GJ tube placement. Since the hospital only had MicKey buttons on hand, we went home that day with a MicKey G tube. At that point, I didn't even care that it wasn't what I had picked out at the surgeon's office because it was 1000x better than the Bard button. :)

A month later Raya was still having gastric bleeding and a whole lotta' out-of-control vomiting so she was admitted and got a MicKey GJ button. She ha…

A few fun pictures

It's been a crazy couple of weeks around here and the pictures have been piling up on my phone. I keep meaning to post them but just haven't gotten to it, so here they are. :) Little missy loves mischief!

Kathie Lee & Hoda's can o' worms

The Today Show on NBC ran a story today that has been making big waves amongst the members of the feeding tube community. Really big waves. The title of the article by Linda Lee of the New York Times is "Desperate brides try feeding tube diet". The content of the article is really nothing new. It's all about brides going on crazy fad diets in order to shed a few pounds before their big day. It lists several diets (Master Cleanse, HCG, Atkins, etc.) and gives examples of women who have been able to lose a quick 15 or 20 pounds before their wedding. Then it takes a rather despicable turn.

It seems that there is a doctor in Florida who has started offering a "feeding tube diet" to people who want to lose weight quickly. The diet is called the K-E diet and is more widely known in parts of Europe as the KEN or "ketogenic enteral nutrition" diet. The story talks about a woman who wanted to lose weight quickly in March so that she could go dress shopping for …

Happy 100th!

This weekend has been a pretty exciting one in our family. Raya's great grandpa turned 100 years old on Saturday and we had a big party to celebrate.
We were a little worried about how Raya would do at the party since it sounded like a recipe for disaster. Lots of people, lots of noise, huge crowded room, food, and no nap. She surprised us though, and seemed to really enjoy herself. She was a lot more comfortable than she was at our family Easter gathering but being at an assisted living facility, this was a little more calm than Easter. :)
Raya wanted to be held a lot still, which is one of the ways she copes with crowds, so she sat on her Grandma's lap and had a little chat with Great-Grandpa.


She ate a couple nibbles of a sandwich roll, a bite of strawberry, and a few small tastes of my ice cream. I tried to give her some of the whipped cream mixed with strawberries from on top of the cake but she flat out refused to open her mouth for that. :) She also got to have a few tas…

Another farewell

Life has been busy the last couple of weeks and I've missed some things so here they are. :)
We had our last visit with our long-time feeding therapist Miss Wendy last week. It was another bittersweet farewell. It makes me sad when we have to say goodbye to people that have been taking care of Raya since we started all this craziness. Raya has been seeing Miss Wendy since June of 2010 when Raya was almost 7 months old. She was with us back when Raya would gag and vomit just from sitting in the high chair or seeing a spoon come towards her face.
I often wondered why we even bothered with feeding therapy for a long time. Raya just plain didn't want to eat. She didn't care if she had anything to do with food, water, formula, or any type of eating utensil, mouth cleaning utensil, or drinking vessel. A lot of our visits consisted mostly of Wendy and I talking about things I could try with Raya and me updating her on Raya's latest vomiting adventures. She always let me unloa…

Thoughts while visiting the hospital

I had a chance to get away this evening and go visit Raya's sweet little friend Lily (who you may remember from this photo shoot we did a couple weeks ago) at the hospital. It's been about 17 months since Raya's last admission and since then, the huge new addition to the hospital was opened. (you know, the one that we had a fabulous view of from our tiny, cramped, double-occupancy room) On the way there, I realized that I can drive there without even thinking about it. The car could probably take me there by itself. 

I've been back there several times for different things (Raya's endoscopies & GJ tube change, awful appointment with the dietitian, etc.) but all of the times I've gone to visit people since Raya's last stay, the people I was visiting were in the new part of the hospital. Tonight, I signed in at the front desk and asked what room Lily was in. The lady told me the number but it was in the hundreds, not in the thousands like all of the new roo…

Drowsiness brought to you by Periactin

After a month-long hiatus from Periactin, I started Raya on it again yesterday to see if we could get her eating a little more. It seems like every time we cycle her on it, we discover a new side effect. The first week she took it, she had terrible insomnia. There was also some extra excitability and restlessness. I was slightly disappointed as I had been expecting the traditional drowsiness that accompanies antihistamines. :)
This time around, the insomnia has been replaced by drowsiness. It's much nicer to live with. I feel kind of bad for her, she's gone back and forth between wide awake and not able to keep her eyes open all day long. I took her to OT this morning and within 30 minutes it was lights out for Raya. she slept most of the session while her therapist had her in the swing and then did deep pressure massage on her. She stayed asleep until I was buckling her into her carseat, woke up briefly, slept for a few more minutes, woke up and was WIDE awake for about 5 min…

Zevex Infinity Interval Setting

Alternate title: How to do bolus feeds (or slow intermittent feeds) with the Zevex EnteraLite Infinity Pump

Alternate title #2: How to make your life easier and get a teensy bit more sleep!

I suppose I should explain why you'd want to use the interval setting. When Raya was younger, we were in a pretty desperate struggle to stop her incessant vomiting. Part of our treatment plan was a very strict feeding schedule. Maybe if Raya had been my only child and I hadn't had ANY other responsibilities but taking care of her, I could have mustered the discipline to get up every time the alarm went off to turn the pump on or off, refill it, etc. but that wasn't the case. I was exhausted and I've never been that good at getting up when my alarm goes off anyway. There were times when she needed to be fed for 3 hours at a time every 4 hours, which meant that I would stay up late to turn on her first feed of the night, wake up 3 hours later to turn it off, wake up an hour later to tur…