Tuesday, July 30, 2013

Camping and Blending.

We did it.  We went camping as a family of four.  Last summer it was out of the question because Beauty was on oxygen.  But this year, we were determined to go.
For our first time, we went somewhere not too far from home, so that if we forgot something, we could easily return to get it.  Definitely recommend staying close to home for the first time.

We brought our awesome blendtec blender.

A pan for washing dishes, tubes, syringes, etc.


Three coolers for foods/liquids.  (Our big has food allergies as well so it makes the adventure even more fun).

This cooler-specifically for medicine.

We made certain to take extra tubes and syringes.  We got a sight with electricity and water.  And we blended our morning feed at night time so as to not disturb the whole campground.
Our biggest fear was that our neighbors would be annoyed.  While the noise of the blender turned some heads, nobody seemed to care that much (Although one lady did come over to find out if we were making margaritas.  She was disappointed, and uncertain of how to respond when we told her what we were blending.)
So, our family of four successfully tent camped for three nights and four days with our blenderized diet tubie. What/where are some of the odd places you have blended?

Tuesday, July 2, 2013

Hospital Stays.

A few weeks back we had a scheduled, 48 hour E.E.G. for our beauty.  This wasn't our first stay with the blender in tow.  The first time I had to explain, and re-explain how I feed my child, until eventually everyone just told me to do what I do, and didn't ask anymore questions.
This time was pretty easy.  Nobody seemed as alarmed or surprised by the idea of it.  Nobody asked about calories.  The stay itself ended up being sort of hellish, and extended.  But that's not the point of this post.
You see, after they unhooked all of the leads from Beauty, and we got on the elevator to go downstairs, she began having a cluster of seizures.  We landed ourselves in the e.d., and she hadn't had anything to eat yet that morning.  After a few hours of being there, and waiting on a room, I asked the nurses if I could feed her.
With full support of everyone, I blended a meal for my daughter in the emergency department.
We ended up being re-admitted on a floor we haven't been on since Beauty was all formula fed.  The dietitian who saw us remembered us.  She could not believe the difference from then to now.  She told me she had to write something down for every child, but felt like I was doing a great job with her and didn't need exact details.  She was completely supportive.  She came back after doing some work nearly bursting because she had plotted the height and weight on a growth chart.  She was ecstatic to see how well she was growing, and went so far as to say she might encourage some other families to try this.
I've heard horror story after horror story about doctors being unsupportive.  We've had our share of hesitancy and misunderstanding with the medical community regarding the diet.  However, there are doctors, nurses, and dietitians who are willing to cheer you on.  You may have to look , or you may be lucky enough to stumble across them, but when you find them, they will be some of your biggest cheerleaders. There's nothing like balancing a horrible hospital stay with being told that something you are doing for your child is so amazing.