Check the box

Y'all are due for an update, I think.

1.) We confirmed Delaneys allergies to Dairy, Egg, Soy, Wheat and a few other foods. She is also allergic to pet dander. Gage now get weekly baths. He thinks we are trying to kill him every time.

2) We had taken Delaney off infant formula because of the soy. She lost almost a pound in a month (despite eating well) so she is back on formula. The soy doesn't seem to bother her nearly as much as the dairy. Dairy is a NO GO.

3) I have an epipen, and I'm not afraid to use it.

We had a doctors appointment this week to check her weight. After her weight loss from the week before, I was just praying she had a gain. The formula worked, and she had gained a little bit back. Wa hoo.

So, the doctor presented me with "one last test" we should do to just " rule it out". All of her tests are coming back normal. She does not have renal tubular acidosis, she doesn't have celiac, she doesn't have any autoimmune problem. But I get the nagging feeling that the doctor thinks she does have something. So, we have an appointment on Monday morning for a sweat test. It basically tests her sweat for sodium chloride. It's a test to detect cystic fibrosis.

I can see why he wants to have her tested. It explains many of her symptoms. Failure to thrive (I'm pressuring the doctor to re term it " thriving at her own pace" but he says there's too much paperwork involved, every party's got a pooper) the mucus stools( I'd just like to point out that the word mucus makes me want to vomit, also the word vomit) and the milk protein intolerance. However, it seems highly unlikely as a diagnosis. First, I was tested while pregnant and came back negative as a carrier of the gene. Secondly, newborns are screened for CF in Colorado. However, the doctor points out (as well as google) that there are between 1000-1500 (depending which article I read) mutations of CF and only the most common show up on the screenings. So we will go on Monday to be tested, and when it all comes back fine, we will check that box and celebrate. And I'll convince the doctor that she is fine. She is a teeny tiny girl with some food allergies, and she is perfect.

 I've been thinking of a battle cry for her. Here's what I got so far:

I'm lean

I'm mean

Move over ( but first, if you wouldn't mind, reaching those dairy/egg/wheat/soy free goodies for me? Thanks)

It needs a little work, but it gets the point across. And never underestimate the power of politeness.

I also came up with:

Hell No

We won't GROW

But it didn't seem age appropriate.

Love, Jami

Blogging at my own pace

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.

Ahh, sweet little Laners. She is chomper-challenged. Just two little teeth, like a sweet, cute cuddly, bunny. She is so innocent

Or is she.....

 Look how cute and sweet I am. I just have two little tiny teeth, they cant hurt you.

See..... I'm sweet, I cuddle dolls and make your heart melt

 Peek-a-boo. Here I am, not scary at all. Just me here, with my two little teeth. You don't have to be afraid

 OR DO YOU?

 So after 5 months with no teething, she is getting some new pearly whites. As a matter of fact, she is getting 4 ALL AT ONCE! Seriously, we couldn't have spread this out over the past 5 MONTHS????? No?

 She has four, distinct, swollen bumps on her top gums. Super.

All I'm sayin is watch yourself, she is deceptively adorable. But she bites like a Rottweiler.

Sweet December

 Blessed December

 

My little Laney bug started walking! She is the teeny tiny-ist little thing, but she is on the move.

The biggest thing about her is her blue eyes.

 And she is ONE: see

 This was the first year that Addison really understood about Christmas. We read the Christmas Story, over and over. And of course, wrote a letter to Santa:

 It went something like this:

Dear Santa,

This is Addison.

Please bring me my Cart.

Over and Over again.

He got the message

 Christmas Eve we set out Milk and Cookies for Santa. And a few carrots for the reindeer too.

 We also got all ready to go outside to sprinkle "Magic Reindeer Food" on the grass, so the reindeer would know where to come first.

 The magic worked

Love,

Jami

Happy Halloween

Hello there friends! Did you miss us? I have been super busy with a *new* job that I inherited. So I have been away from the house, the kids, and turns out the blog. But I found a few minutes (read: Delaney is napping and Addison is watching Tangled) so I thought I needed to post our halloween pictures.

 Nana and Papa planted some very special pumpkins for the Grandkids so we went to our own private pumpkin patch to pick them. Papa is still healing his leg, so he sat with Little Laney bug. Nana let Addison choose her own pumpkins. Turns out, we made out with LOTS of pumpkins! Yay!

 After our private pumpkin pickin', we went for some fun at the local pumpkin patch. Last year I missed it because I was in the Hospital, keeping Delaney safe inside. This year we made the most of it.

 Addison LOVED the corn box, Delaney was less than thrilled.

 Chicken Papa came too! He helped Addi onto the pony, and then RIGHT BACK OFF. She wasnt into a pony ride this year.

 Delaney is very close to learning how to walk! I cant believe how big she is getting! Coming up on her 1st birthday!

Hope you all had a very spooky and Happy Halloween!

Puppy Love

Papa has puppies and Addison is in love. They are adorable, but they are not coming home with us.

Life Lessons from the Playground

Sometimes in life, taking the first step is the hardest. You may be afraid to miss, or unsure of your footing. But take the risk, because you will never get where your going if you don't take the first step. Your Papa gave me a card once that said," You will never discover new Oceans, if you don't have the courage to lose sight of the shore."



 Be proud of yourself when you accomplish overcoming a fear.

 Then keep on truckin.......

When life gets wobbly and you feel like you are being pulled in two directions, take a deep breath, and make the decision to move forever forward.

Never forget that you are not alone, there are so many people that love you and stand behind you ready to help.

 There will be obstacles to overcome. Sometimes you have time to prepare for them, make the most out of those opportunities. When you see an obstacle up ahead, make a plan to get around it.

 There will be people in your life that always seem to get in the way. It should be your goal to figure out a way to navigate the situation without either of you falling. Be friendly, even when people don't deserve it.

 Then keep on truckin.......

 You are strong, smart, sweet and capable. Hard work will get you where you want to go.

Look back at what you have done, learn from the things that worked, learn more from the things that didn't. You will learn more from your mistakes than your success. Be humble and help others when they make mistakes.

Always run away from the boys that wear their pants backwards and smell funny. Always. Even if they don't, run away anyhow.

When you get yourself into an impossible situation, find someone you love and hold on tight.

And finally,

Enjoy every second you have. Each one is a blessing. Surround yourself with people that are good for you and good to you. Be a great friend, even to those you dont know.

(But seriously about the boys, run)

And keep smiling



Dear Addison,

Time is going by so quickly, and everyday I look at you with total amazement. You are so capable in all that you try, and you are a very determined little girl. I hope you can keep ahold of that determination forever, it will serve you well in life.