The Tiny Chronicles

Something isnt right with Delaney.

Its not that something is wrong, its just that something isnt quite right. And there is a huge difference between something being not right, and something being wrong. But a Mommas heart still hurts with not right.

So, we have been working really hard to find out what it is. Its been quite a journey so far, and I havent really known the words to get it all out. But I have to get it out. This big old Mama heart is aching, and I just got to get some of the pain and fear out, to make room for the joy and hope. So here are the facts:

She is, I believe, quite allergic to Dairy and Eggs. Just a touch of dairy and her diapers are tragic. Its all mucusy and sticks to her bottom and gives her a blistery diaper rash. One bite of egg, and she is a puke machine. But I know that there is more, oh so much more, that she is allergic too. 

Something is just not quite right.

On top of that, she is tiny. Teeny Tiny. She has been slowly dropping off the growth cart since her 6 month appointment. So we have been watching it closely. In December, she started rapidly dropping. Then, at our last appointment, she had actually lost weight. 

Something is just not quite right.

So we have had lots of blood work done, some x-rays, and other tests. Now we are waiting. And each day I hope for an answer, but each day I am told to wait. 

The waiting is impossible.

Here are the things that we suspect:

1.) Her poor growth could be a result of a condition known as "Renal Tubular Acidosis". Some of her tests have come back indicating that she may have this, but some have come back normal. She has an alkaline phospatase level that is 5 times higher than it should be.... not quite right. The Doctor told me that her results are "confusing"

2.) She tested positive for allergies to EVERYTHING. Oh, except Shrimp and Cod. Her blood work showed high allergies to Wheat. So we have removed all suspected allergens from her/our diet. But I will probably not be feeding her Shrimp and Cod.

3.) Some of the tests suggest a Vitamin D deficiency. So we had bone x-rays done to test for rickets. But, some of her tests come back normal.

4.) She is continuously dehydrated. No matter how much she drinks. Her lips are cracked and bleeding. All the time. I chase her around with the best lip balm money can buy. This may suggest the problem with her Kidney.

Today is Valentines day, Im not much for Valentines Day. Not in the typical, highly commercial sense. I will probably never purchase my husband a valentines gift, and instead of a "special" valentines dinner out we will most likely be eating gluten free/dairy free homemade chicken nuggets. And I will probably mess it up. But what I do like about this day, and all the pink hearts I see around, is that it reminds me to open up my heart for the love and joy of life.

To love others, and be kind. 

Even to the appointment lady who told me they would be happy to make an allergy appointment for Delaney in FOUR TO SIX MONTHS. So instead of doing my typical, jerky Jami, yell at the lady who has no control over the Allergy appointment system. I started shaking, let out a squeal of frustration, and hung up on her ended the conversation before I was a jerk.

You know, because today is all about Love.