halloween 2016

October 31, 2016 by sara priddy

fort worth geneticist

August 23, 2016 by sara priddy

We drove to DFW on Thursday. It was a long drive, but it was all worth it: we drove straight to Sanger and ate at Babe's Chicken Dinner House with Kalissa and Dusty. It was amazing. All you can eat mashed potatoes, cream corn, biscuits, salad, and green beans. Hungry?

K & D were sweet enough to let us stay with them all three (rainy) nights. They might have come to regret that, but I'm not going to ask... Friday morning, the girls, Adam, Kalissa, and I checked out the Dallas Arboretum and Botanical Gardens. We spent most of our time in the children's garden, and next thing we knew it was lunch time.

We ate at Rodeo Goat in Fort Worth, and I had the nanny burger. It had goat cheese on it, and I looove goat cheese. The fries were hand-cut like wingstop fries. So go there next time you're in Fort Worth. If you can't tell, meals are my favorite part of the day.

The doctor's appointment was next (more below) and then we headed to the stockyards to see the cattle drive. It was storming so they cancelled the drive. That was a little disappointing, but nothing like a little retail therapy to make it all better. Not really, it was just stroller shopping (we can't fit the double jogging stroller And all the kids in the car at the same time so an umbrella stroller was on the need-to-buy list). Next we picked up Angelo's BBQ to go. It was good (especially the potato salad), but it made me think BBQ tastes better when you eat it At the smokehouse. Especially when there's taxidermy on the wall.

We went to the Dallas World Aquarium Saturday morning. It was cool, but not cool enough to do again (at those ticket prices). We were supposed to eat lunch at a well-reviewed Mexican restaurant, but it happened to be closed for lunch. Our plan B was a Greek place. The lamb kabobs were not so awesome. Next we got to spend a few hours at North Park Mall with Hannah and mom. It didn't feel like hours though.

So...the doctor's appointment. I really liked her, even if we don't know more now than when we left for Fort Worth. She wants to do whole exome sequencing on Emme. She says the insurance will deny it at first, then she'll submit a letter and hopefully they'll cover part of it. They'll take blood from Emme (of course) and Adam, and me and if all goes well, in six months, we'll know what's going on with this sweetheart. There's a chance we won't know though; only about 25% of those tested find answers. I did a little independent research and it looks like for those with white matter issues, the percentage is in the forties. The doctor also ordered another MRI of her brain and an MRI of her spine. She wants Emme to do more therapy than she is now doing, and she is ordering leg braces as well.

I think we're doing about the same emotionally around here, if only because we stay super busy. So these photos. They're great, aren't they? Cristina is awesome for getting so many beautiful photos of us when we're anything but easy to photograph. Case in point:

Finn peed on Adam first thing. See the wet spot? Yep. And I didn't have time to get the clothes together like I wanted so all the kids are wearing tees. I did find the time to buy shoes for them all- only the girls' didn't fit so Willa is wearing her John Deere boots and Finn is barefoot. But Cristina rolled with it, and I am so thankful for her kindness (always) and her God-given gift of photography.

Proof that Willa is a camera hog. She's in just about every photo because she was (as you can see) right up in the lens at all times. Finally! a kid who likes her photo taken!

Thank you all for your thoughts and prayers and time and space. We love you, sara (and fam)

oh, and p.s. for those of you who don't know: Willa usually introduces herself as follows, "Hi, I'm Willa, but you can call me batman." Sometimes she gets a little irritated if we call her anything but batman and if you ask for help, she's in. Even if you're a panhandler. Help is help and she's a superhero.

larned + tucumcari + cuervo + nara visa

August 11, 2016 by sara priddy

Sunday, I made my second trip of the summer to Downtown Dental Group in Manhattan, Kansas. I saw mountain lion roadkill on the way up there (right outside of Corona, NM)!! That was cool. I love the New Mexico part of the drive... and don't mind the Kansas part. The Oklahoma stretch can go whatever itself though.

I got to see my cousins Jan and Nathan (she drove 3.5 hours to make that happen), and we ate at a really good restaurant called Bourbon and Baker. They have "small plates" so you have to order a few to fill up. We shared Kobe beef sliders, deviled eggs, strawberry bruschetta, and fried asparagus. And Cake! White cake with blackberry filling and whipped cream frosting!

Then there was the dentist appointment. Not all that much fun except I got to see everybody, and Ali sent me away with birthday candy and a Starbucks card. This whole 26 hours plus round road trip to go to the dentist thing isn't just because I'm a little crazy. It's because this group of people really are some of the greatest around. Thank you Ali and Dr. Winter and Michaela & Kim. And yep, I left the dentist with candy.

I got to spend the evening with Katherine and Becky and Ari and Brynnon. We just ate dinner and went for a walk and hung out in the living room. I miss having you two right next door. Wanna move to El Paso?

Of course, I took photos on the way up and the way back too.

Other random things:

I had an Allsups' chimichanga for breakfast on the way there- it reminded me of high school track practice.

I really hate the parts of the drive where the radio will only play Christian music or Spanish music. Obviously, Spanish music is the lesser of these two evils, right? Don't be offended: I love God and love music, these stations just don't use a recipe that suits me.

I got stopped by a Texas trooper a few miles from home. Just a warning. That makes my speeding traffic stop count really close to 40 now. I've lost count.

In Larned, I stopped to take a photo of the old State Theatre and Mr. Sherman gave me a tour. I almost wished he hadn't because the town sold the original seats about ten years ago and everything in the theater was new and lacking character. He was a sweetheart though.

Thank you husband for taking care of the babies while I was gone. It's not easy, but you never complained. I'd do the same for you, except I'd totally complain. love, sara

balmorhea

August 02, 2016 by sara priddy

We took my niece, Hannah, and Dad to Balmorhea weekend before last, and I'm so glad we did. It was a five hour round-trip, but we have another Texas bucketlist check now. That being said, as awesome as it is, it really is just a swimming pool and I wouldn't make the drive again.

Have a great week.

love, sara

no news is no news

July 06, 2016 by sara priddy

I'm sitting here holding Miss Em while I type one-handed. She's playing with my hair. The girls are eating M&M's (okay, so I am too).

We had McDonald's chicken nuggets for dinner because I had a really rough day and Adam is out tonight. Willa said, "This is the best dinner ever." Apparently my home-cooked meal game needs stepping up! Tomorrow looks to be worse than today--I figure I'll be camping out at work tomorrow night to be ready for trial on Friday. Finally though, the doctor called.

Just so you know, we had an appointment with the neurologist June 24th. I thought we'd get the results then. I was naive. Even though the blood was drawn June 6, only 1 blood test and 2 urine tests were back. They ruled out adrenoleukodystrophy and canavan. I called last Thursday and Friday and the medical assistant told me more results were in but they were still missing some. I called again today and the doctor returned my call. All the results are in...except one. The person who input the tests didn't enter that test name correctly so they gave us results for a test that wasn't ordered and didn't give us results for the Krabbe's disease test. It's pronounced krah buh... so you don't have to say your baby has crabs :).

All the results were normal, which means we have no diagnosis. I didn't even realize that would be a possibility until that last neurologist appointment two weeks ago. We do know that she doesn't have canavan, nor adrenoleukodystrophy, nor metachromatic leukodystrophy, nor a mitochondrial disorder (which I didn't even know was an option because he said she had a leukodystrophy). The possibilities are Krabbe's or some other leukodystrophy or cerebral palsy or I don't even know...

We have an appointment in Fort Worth at Cook's Children's on Friday, August 19. I'm frustrated, but it's crazy: the more frustrated I get, the more hope I have too. Emme has made progress since I wrote the original post. She's grabbing things now and that's awesome. She's getting stronger- just slower than she should (she's almost 9 months old, but her developmental age is at about half that). Those of you who pray, please keep praying for Emme (and the rest of us too while you're at it, if that's not greedy). Off to change an Emme poop.

Love, sara