Tuesday, January 13, 2009

Checking in Tuesday - #1 and #2 :)

It's been a busy day! This has been my first chance to post.

They woke us up at 6:20 to put in Emily's blood drawing IV. They checked and double checked her arms and legs, and put heat packs on her arms and legs. They decided on her right ankle, and got it on the first try!!!!! :) It still took about 25 minutes, but it's working well for blood draws so far, and I have my fingers crossed it will last the whole time we're here.

I measured out her first feeding at 8am and ran that through the pump. She is on a bit of a different schedule for feedings for now too. But she tolerated the new formula well! It is a carbohydrate free formula, called RCF, mixed with Microlipid and water. The microlipid is emulsified oil that will mix with other solutions and contains the fats that are the key to this diet. The RCF and Microlipid are mixed with water, and that is the formula.

At 10 o'clock we had our first class, side effects of the diet. We officially met the 3 other families, all of whom also have girls; one 4, one 3, and one 14 months. We were informed that constipation, vomiting/nausea, and sleepiness (like after Thanksgiving dinner) are the most common side effects. Emily is already constipated on a regular basis, so we really have to keep on top of that. Her Colace has been switched to Miralax because it comes in powder form. In fact, all of the medicines that come in liquid form had to be changed to tablets or powder because the liquid form contains sugar, which she can't have. So now there will be many more pills to crush at med time. :(

We were given a chart to record daily seizure activity, urine test results twice daily, blood sugar daily, weight once a week, and a few other things.

After class, I ran back to get Emily's next feeding weighed and started. But before I could do that, I had to take Emily down to get a bone age xray. It's a requirement of the diet, but I'm not quite sure why. When we got back, I got the feeding started and ran down to get lunch. I had just enough time to shovel it down and then it was time for the next class!

Class #2 was with the dietician and we had to bring our calculators! ooooooooooh! ;) We had to practice calculating meals, using carb, protein, and fat exchanges. Right now, Emily is only eating a tiny bit of food by mouth, but if she progresses and starts eating more, I will have to know how to do this. Not too complicated, except when the protein required adding or subtracting from the fat exchange values. Luckily we have a math teacher in the house! *wink*

After that class it was almost four o'clock. We had a little break (read "nap") and then it was time for dinner. I brought Em's feeding chair from home and she had her oral feeding and another bolus feed on the pump. I got some dinner too and now I'm settling in for some good TV tonight!

(Hey honey, if you read this in time, can you record Biggest Loser???) :)

Good night!


Gee-off said...

Of course..., but only half of it. You know, one part of the agreed upon two parts. :)

Adam and Andrew said...

WOW! That sounds really complex. Emily is so blessed to have a momma that takes such good care of her and is doing everything to help her be her best and healthiest. Keep up the good work!

Gee-off said...

Aim- Decreased bone density is a potential side effect that needs to be monitored, I assume that was why the xray was needed...

Rachel said...

You really are super Mama, Aimmee!!! I am really praying and hoping this diet is awesome for Emily!

KRISTA said...

Thinking of you from across the miles, Aimee and Em. Sweet dreams tonight!

Anonymous said...

Aimee and Emily,

We love you both and you are doing a great job Aimee helping our little Emily.
You are both troopers!

Love, Mom and Dad xoxo

Aimee said...

Gee - ummm, what do you mean half? And thanks smarty pants! ;)