Thursday, May 2, 2013

It's All About The Numbers

In our world, what it really boils down to are the numbers.  Sometimes these numbers bring cheers, sometimes tears.  Today they just bring frustration.
We had our regularly scheduled metabolic clinic appointment this morning.  We were up quite early and getting blood work done by 8am.
This is how the numbers stack up:
Good news first, cause it is worth celebrating--Ammonia--25!!! Yay!
Weight--has not gained at all in the last month, in fact she went down--only 0.1kg but its not in the direction we want.
Height--has not gained at all in the last month, and due to the fact that she was measured on different scales, it actually looks like she shrunk 1cm.  Impossible, I know but still again, not going in the direction I want.
Calorie Intake--We are about 200 calories/day UNDER our target.....She is at approx. 1100 and ideally should be at 1300!
Arginine--Was super low last month, so waiting to see what it is this time.  If low again, an increase in meds is on the table for Alexa.
The rest of her amino acids are not back yet, so will update tomorrow when they are in.

Updated to include her amino acid and other lab results:

Well not a big surprise here, her amino acids, the important ones at least, the ones needed for growth were low.  I guess we know why she has not gained weight or increased in height.
Her citrulline was in the 3400 range--SUPER HIGH but in HER normal range
Liver Function Tests--high--not a good thing but also seem to be in HER normal range(at least lately)


I am tired and frustrated....

I am trying so darn hard to get the right amount of protein in her--not too much and not too little--exactly the right amount, and while I have been succeeding lately in that area, it has come at the expense of those so much needed calories.

She has taken a big liking to egg yolks and so I have been letting her eat them more lately, coupled with some other lower protein items.  It seemed perfect, as it was an easy way to get her to reach those measly 8g of protein she requires per day. But I had been warned,  about using lower protein dairy products(like yogurt and egg yolk) as they contain very little calories.  I was hoping that I was coupling it with enough higher calorie items that they could balance each other.  I was wrong!

So now, I am faced with the task of finding higher calorie items that she will like and eat.  Our dietician gave us some good suggestions that I will try out, but I am feeling kind of beat up now.  EVERY TIME, I find a new item that would be perfect(such as gluten free blueberry muffins-which contain 190 calories and only 1g of protein each) she eats one with pleasure and then wants nothing to do with it again.  My pantry is full of items that she promises she will eat and after the first attempt, we are stuck with the rest of it.  And most of these specialty items are SO expensive, so buying a whole package of muffins at $6.49 per package of 6, only to have her eat one and refuse the rest, is not ideal.  I would gladly spend $20.00 per package if she would ACTUALLY eat them!

I feel like I have failed at my job to keep her healthy.  Like her growing is dependent on what I choose to feed her and how much of it I can get her to consume--And although, I do not see it as a burden  it does become exhausting.

My head is filled with all her numbers.  It is full right now and can't take any more in!

1 comment:

  1. It sure isn't easy, is it?

    If her aminos are good tomorrow, with that great ammonia number, you'll be able to breathe easier. Hoping that tomorrow brings you good news, or whenever the labs come back.

    Stay strong, all of this is worth it!