Another Spots Update

We were able to move Emery's apt. with the derm. at Primary's up, which was great for 2 reasons:

1. Calm worries sooner.

2. Then we didn't feel bad we were double booking the dr.

Also her apt. was at the outpatient clinic in Riverton, so it was closer! The derm. said immediately that she knew it wasn't GGA. She said she sees a lot of children with GGA (so she doesn't even think it is that rare in children, but also only sees children). She said she's "dying to see what the pathology report says.

She said she likely thinks it is:

1. Sweet's Syndrome

or

2. Gianotti Crosti Syndrome

Both of which basically take time to get rid of. 

So we're still waiting on the path. report, but she also said she didn't think it was anything urgent and that whatever it was would likely just take time.

Enjoy the Journey.

Spots Update

(this picture is from Wednesday afternoon)

We got a call from the derm. yesterday, and what I thought would be a results call was a, "We're sorry the Dr. doesn't know what it is and he is going to be sending the slide to another pathologist. 

So we're in the waiting game still, another 2ish weeks before we get results (hopefully). Her apt. with the ped. derm. at Primary's is set for Dec. 23. 

Thanks for all of the prayers in her behalf. 

Enjoy the Journey.

Dear Girlie,

You've had a rough week sweet girlie. Monday you only had a 20 minute nap on the way home from the Dr's office in Provo. You saw two different Dr.'s and they've referred you to a pediatric dermatologist at Primary Children's Hospital. Your spots have been worse this week than they have been the entire three months you've had them. Your back feels like a bumpy toad.

On Tuesday I really felt like I needed to take you back into the dermatologist you'd already seen even though I didn't like him (his "bedside manner" wasn't the best).  Again you ended up with a short nap, this time an hour, and we waited 45 minutes to be seen. He looked at your spots and thinks that you have GGA-Generalized Granuloma Annulare. It's EXTREMELY rare in children, but possible. 

They don't know what causes it, or what to do to fix it. If that is what it is, he said it will take you 2 months to 2 years to grow out of it. And where the white centers of your spots are could leave dark spots (like scars almost).  He said to make sure it was GGA that he needed to do a biopsy. Girlie, that was so sad. They had me lay in the procedure chair, strip you down to your diaper and hold you belly to belly. They put High School Musical on for you, and I hope you don't hate it now from the traumatic experience. They numbed you and you started crying so hard. Almost instantly your hair was soaking wet from sweat and alligator tears were streaming down your face. The nurse had to push you against me and was commenting how strong you were. They took the biopsy from your right love handle, and then gave you just one stitch to close it up. 

It didn't take too long to calm you down, but that was only for a short time. I had to take you downstairs to get your blood drawn. Three different people tried in both arms, fishing for blood and didn't get any. I finally made you stop because you were so so sad and it made me sad to have them keep poking you. You were crying so hard I thought you were going to pass out. 

Yesterday I took you to the outpatient lab at the hospital where we went last time and they were able to get enough blood from pricking your finger! You only cried when they were almost done and I think it was because you didn't know why she was still pushing on your finger. 

You've been through a lot in the past few days girlie, but hopefully we'll start getting some answers. It breaks my heart to see you covered in spots, even if they don't bother you.

I love you,

Mom

Dear Girlie,

Putting you to sleep is one of my favorite times of the day. Not because it means I'm "off" active duty, but because we generally share some precious moments. To be able to fall asleep either dad or I lay next to your bed and you hold our ear. Lately you've discovered my scar and have been rubbing it, then you just put your hand on my chest to touch my skin for a while, then move back to my ear before you fall asleep.

I can tell as you're falling asleep because your grip on my ear gets lighter and lighter until gently your hand falls away from my ear and onto the pillow. BUT you don't always fall asleep in a timely manner. Sometimes dad or I have to leave the room and let you cry for just a minute so you know we mean business and that it is bedtime. We HATE listening to you cry, but you understand what we mean and get in the right mindset to fall asleep.

The last few days as I've put you down, we'll lay there and then you break out into the actions for "Popcorn Popping" starting with "make a treat, a popcorn ball that would smell so sweet, it wasn't really so, but it seemed to me, popcorn popping on the apricot tree." As you finish you clap your hands and then go back to my ear. It is one of those moments that makes me so happy to be your mom.

We've had people say, "don't you just wish you could lay her down and she'd go to sleep?" I use to wish that, but I've realized you're growing too fast (You've grown an inch since Thanksgiving!!!) and I won't get to have these moments forever. So, I'm happy to lay with you to put you to sleep.

Love,

Mom

Oh Girlie...

You have one sense of style.

A shirt that she made into a dress, she put it on (wrapped it around her) and was trying to tie the red bow herself so I helped her out.

Socks over pajama pants and fake toms with your normal shirt....

Tonight it was the Chinese goatee after dinner. 

Thanks for keeping me on my toes.

Enjoy the Journey.

We're [still] Seeing Spots...

We're going on three months with these spots... I took her to the Dr. today, one that we hadn't seen before at the clinic. He was puzzled, pulled in another Dr. (his "book of rashes" as he called her) and she was puzzled. They come and go, and certainly don't always look this bad, this is the worst stage of them, and then some of the sort of bruise. 

Anyways, we've been referred to a Pediatric Dermatologist at Primary Children's. When they called they said they couldn't get us in until Jan. 10, then I called the dr back we saw today and the absolute earliest they can get us in is Dec. 23. The receptionist was SO SO kind, she said to call back 2x a day to see if they'd had a cancellation, and she would also keep our info on her desk and let everyone know that she needed the first cancellation that came up. 

Prayers appreciated!

And a cute one of the oldie before bed. 

Enjoy the Journey.

[For the Love] of Alfredo

Jared and I have different favorite alfredo recipes... so we switch off. The beauty of being sick=getting to eat your favorite recipes because they sound good and you've been living off of chicken noodle soup.

But the girlie loves it no matter which recipe... 

Enjoy the Journey.

[For the Love] of Apples

One in each hand... that's how we roll around here.

Enjoy the Journey.

We Love Christmas

The magic that comes at Christmas from children is something incredible. This year it is way more fun than last year, and I expect next year it will be even more fun!

Enjoy the Journey.

Some Days...

Some days... the girlie ends up in her undershirt while trying to get dressed (it can be a process that involves playing breaks.). 

Or some days she jumps up from a diaper change and ends up with no pants.

Other days we stay in our pajamas all.day.long. And yes she asked for every single clip to be put in her hair.

Santa came early and brought books for Emery to open every day until Christmas! It's the best time of the day.

And those days when we stay in our pajamas all day she gets jeans, boots and a coat to go find boxes to help daddy ship stuff.

Other days we have a tired cowgirl at our house who throws a minor fit before taking her nap.

No matter what "day" we have, we love it and I love getting to spend my days with her.

Enjoy the Journey.

This Girlie...

I love her.

Enjoy the Journey.

[For the Love] of Toast

I was sick last week and wanted toast. Then I took a bite and didn't want it and we discovered the girlie LOVES toast!

Enjoy the Journey.

Christmas Decorations

Last week we got our Christmas decorations out and put them up! I LOVE Christmas!

Taking a break to clean in the kitchen, the girlie is quite the helper these days!

I would get the ornaments out at the counter and put the hook on them, Emery would grab them from me and run them to Jared, repeat! She LOVED it!

This was the first year I wrapped our cupboards! The first of many I'm sure!

unwrapping her ornament. 

yes, she still has spots.

This tree was Granma's and I'm so glad she gave it to me. It was my job every year (even after I left for college) to get it out and put all of the lights on it. I held back some tears putting it up, but it's a wonderful memory to have!

Enjoy the Journey.