Monday, August 27, 2012

A Book for Tube Fed Children

My Tubey book, feeding tube, special needs children, G-Tube, GT, Rhiannon Rubadue, backback, feeding pump, EnteraLite Infinity Enteral Feeding Pump
We love this book-"My Tubey: A day in the life of a Tube Fed Boy". J and L love sitting down and listening to the story. L always has to pull up his shirt and show his tube when we read it. This book came about because a mom (Rhiannon Merritt-Rubadue) wanted a kid's book for her toddler who was tube fed. The toddler was starting to notice that no one else in her family had a feeding tube and there were no books written for kids about children with feeding tubes. She didn't get to writing it immediately as she was busy with a tubey toddler and siblings but her idea remained active in her head. In 2011 she wrote "My Tubey: A Day in the Life of a Tube Fed (Boy/Girl)". I love that she wrote a book for a boy and a book for a girl. We found out about this book from a support group we were attending for parents of special needs children. The book hadn't been published yet but we anxiously waited until it was for sale and got it as soon as it was available. The boys were too young to really understand what it all meant at that time but now they understand and like hearing the story.

J asking questions about one of the pictures showing a bolus syringe and feeding pump.
 L loves to sit and look at pictures.

She is currently writing several more books including:
  • There's More Than One Way to Eat
  • Bye-Bye Tubey: It's Time to Remove My Tube!
  • My Tubey Goes to Preschool
From what I can tell none of the new books are not out yet but looking at her facebook page there was a comment stating that she is working hard to get the first book finished and it should be out in September. I am looking forward to seeing and getting the Bye-Bye Tubey book whenever it gets published. I pray we get to read it to L to prep him for getting his tube out soon (like within the next 2 years).

Take a look around her website there are several different thing to point out:

  • There is a link to her Amazon store where you can purchase her books
  • There is a little photo gallery that she shows some pictures from first NG to tube being taken out. Her quote is "I hope these pictures are a comfort to you as you may see your own tube feeding life mirrored back!".  My FAVORITE picture is about half way through where mom and daughter are sitting on the floor and both are covered in formula throw up. It is my favorite because the first year L had his feeding tube that was our daily normal until he got his GJ tube. Glad that we aren't the only ones!
  • There is a feeding tube resources page. I will be posting about some of those sites at another time along with some other cool sites I have found!
  • My second favorite picture on the website is on the "Contact Us" page. It is the mom holding her little girl and reading her a homemade book about getting her tube out. I love it because it is such a simple thing to do--make a quick fun book--but I would have never thought about making L a book. This mom has lots of imagination and a drive to make it happen! I envy those creative types that can bring a dream into reality. I can dream but when I wake up it is left behind and quickly forgotten. 

  • You can go to the My Tubey website or you can also click on the tab above for our Amazon store to find the books.

    Wednesday, August 15, 2012

    Sometimes Paying More Is Well Worth It

    We were very fortunate and thankful to have two baby showers and receive lots of things for J and L. The shower given by church friends was first and the biggest gift was our Graco Pack N' Play Playard. It has been great for every stage. There is a small "napper" bed that we used when the boys were tiny and swaddled. The changer is a drop-in attachment that keeps diapers, wipes, blankets, toys and anything else you need very close and easily accessible without having to bend and reach to get something from the bottom level of the pack n' play. We bought a second pack n' play used at a consignment sale since we had twin babies and used it for trips and the few times that we were away from home and needed two, but our Graco is still used today and after almost three years is still in excellent condition! The boys sleep well in the same room at night, but not at naptime during the day. Since they are in different classrooms at preschool during the week, it's just easier for us to split them up and nap in separate rooms. J naps in his crib in the boys' room and L naps in the Graco pack n' play in our bedroom. Yes, it is pricey and we were surprised to receive it, but it made things much easier for us and almost three years later has help up with constant use and is still in like-new condition.

    The pack n' play fit well when the boys were very small and spent the night with Ken's parents in their RV.

    The boys only napped or slept together a few times when they were very little, but this time was only for one night and it made packing a lot easier.

    Monday, August 13, 2012

    Chocolate Frosting Shots

    Picture by Chocolate Covered Katie

    Chocolate Covered Katie is another blog that I am following. She specializes in healthy desserts! Now most of them are a little out of my comfort zone because they use ingredients that I am not sure I like. I thought this recipe was a perfect way to ease myself into her recipes.

    She has the chocolate frosting shot recipe and also a strawberry frosting shot recipe. I was originally going to try the strawberry recipe but my love for chocolate won. The recipes are very easy to make. The only disappointment is that you have to open the can of coconut milk and leave it in the fridge overnight. I didn't realize that until I was ready to make it and eat some chocolate, and then re-read the recipe. I was a little bummed but went ahead and started the process so I could have chocolate goodness the next day.

    Here is what you need:

    Chocolate Frosting:
    • 1 can full-fat coconut milk
    • 1/4 cup plus 1 tbsp cocoa powder
    • 1/2 tsp pure vanilla extract
    • sweetener to taste (I used a little Stevia, but any dry sweetener will do.)

    Strawberry Frosting:
    • 1 can full-fat coconut milk
    • 2-5 strawberries (more will yield a thinner mousse)
    • 1/4 tsp pure vanilla extract
    • sweetener to taste (Stevia or powdered sugar)
    • tiny pinch salt (trust me)

    Here are the directions:

    Open the coconut milk, and leave the can (or transfer to a bowl) uncovered in the fridge overnight, unless it’s already thick like mousse. (Don’t shake the can before opening.) It should get very, very thick. (If it doesn’t, you’ve gotten a bad can that won’t work for the recipe. I highly recommend Thai Kitchen Organic, because I’ve had the most success with that brand.) Once thick, transfer to a bowl (you can opt to leave out the watery bit at the bottom of the can, if you want it even thicker) and whip in your cocoa, vanilla, and sweetener with a fork, or even beaters if you want to be fancy. Stored uncovered in the fridge, the mixture gets even thicker.

    My Thoughts:

     Ok so I don't read directions sometimes very well and this time was one of those times. I had already opened the can and dumped it into a bowl to leave in refrigerator overnight and oops..stirred it up! So the next day it was thin and the next day it still hadn't thickened up. I started thinking about how I could save it and not waste perfectly good coconut milk. I decided to go ahead and put the cocoa powder in it and some powdered sugar. I got the hand mixer out and used it for about 3 minutes. It still was thin so I put it into the freezer......if I couldn't make frosting MAYBE it would freeze well. Two day later I tried it and it was delicious. It was similar to chocolate coconut ice cream. I was headed out to work and couldn't wait until I was off to eat some more. Another 3 days passed and it is still very good. It was a little harder but I let it sit for several minutes and it was perfect. Next time I will try to make one with Splenda and another one with sweet n low. I will let you know now it goes and what they taste like. IF one of the sweeteners works and is just as good then I will be making this all the time because it will be low sugar (just whatever naturally occurs in the coconut milk) and non-dairy!

    Friday, August 10, 2012

    Candied Carrots

    picture from Undressed Skeleton
     A new leaf....I love food whether it be sweet, salty, greasy, and healthy. I have been working nights for the last 6 months. I haven't gained any weight (fluctuating +/-5lbs) but I haven't been motivated to lose any weight either. Most of the recipes I have posted aren't too healthy either but that is about to change. I have several recipes that I am trying out and will give you my honest opinion about how they taste to a fatty food lover! I am starting a weight loss competition at my work that will be running over the next 8 weeks and I am hoping to lose about 15 lbs.

    A blog (Undressed Skeleton by Taralynn McNitt) I just started following posted a recipe for candied carrots. Now when talking about it with several coworkers the opinions of how this would taste were mostly negative but I had hopes for this one. I made it with one box sugar free strawberry and one box regular orange jello. If it turns out good then next time I will do both boxes sugar free so it will be more diabetic friendly. I shredded some whole carrots myself instead of buying the bag of already shredded carrots--cheaper!

    My Thoughts:
    The next day I was worried when I tried it out because the carrots were very carroty but two days after making it was very good. The carrots were softer and sweeter. It was very good with some cool whip too. I took it for dessert during my 3 nights of work and it was a perfect sweet treat. I don't even think I will make it all sugar free next time because it didn't have a negative effect on my blood sugars--even with regular cool whip! J liked it the first time he tried it and kept asking for more. He also asked for more "school whip". Very sweet little man!

    Wednesday, August 8, 2012

    Best Baby Registry Gift (Still Used Every Day)

    We are grateful for everything we received at our two baby showers for J and L. Rachel's mom and sister hosted a shower for family and friends. That day we were given the most useful gift that has been used at every stage and is still used every single day. Ken's aunt and uncle gave us a Fisher Price Smart Stages 3-in-1 Rocker Swing and it has been amazing! We had a bouncer seat on the floor that the boys started in, but it didn't take long for them to enjoy being rocked in the swing (and it was a great way to soothe and occupy one baby while the other was being changed, held, fed or rocked). The rocker easily detaches from the swing and has a fold-out kick-stand that reclines the seat and keeps it from moving. The straps kept the boys secure and the seat worked well for sleeping or giving them a different view.

    Very early use - J with his oxygen and pulse-ox monitor before L came home from the hospital

    One of L's first days at home

    J in the walker playing with L. Great example of how the rocker keeps baby strapped in and secure. They did this many times and no, L never fell out...

    The swing frame folds together and has been put away for about a year since J and L have outgrown it, but the rocker is still used every day. That chair quickly became L's favorite, and he loves relaxing, reading books, watching TV and playing with his toys in it. The only time it's not used is when we travel, and L definitely misses it! This 3-in-1 rocker swing has been so great for us, but unfortunately it looks like Fisher Price has discontinued it. The link I shared above is from Wal-Mart, the only site I found selling a similar model to ours, but it is marked as clearance and unavailable online. Looks like there may be a few left in the stores and they'll soon be all gone. Just checked to see if it had been recalled, and it has not. Too bad - it's been great for us and we'll definitely pass it on if/when L is finished with it so that someone else can have a great experience too.

    Resting after a long, hard day at preschool

    L watching J run around the living room with a toy

    From last month - chair still fits L well, but a growth spurt might make it uncomfortable on the back of his head. Looks like he might need a new chair for Christmas.