Today I got my favorite letter in the mail from our insurance, denying Phoebe's blood work for the same "it is not deemed safe or effective" reason.
Last Thursday we drew the blood for the genetic testing to be sent to Baylor.
Well today I get a phone call from the genetic counselor that the hospital lab screwed up and didn't draw both tubes that were needed.
So this morning we went up to Goryeb to have the second tube drawn. Phoebe is finally starting to feel a little better and this is already stressing her out.
Bright side of all this is the Doctor and genetic counselor have been yelling and filing complaints because they are disgusted this happened.
When we got to the hospital I called the genetic counselor to let her know we were there. She met us in the lobby with another copy of the slip from last week and a new slip for the tube that wasn't drawn.
Once we registered and went to the labs office and got called in to a room for the actual draw I saw that the mistake they made was much bigger than I thought.
It wasn't just 1 tube that they didn't draw....it was 4!
How do you misread the slip that clearly states what the color tops of the tubes you need to draw are!
Phoebe however did an amazing job today! It was by far the best blood draw we have had since Cincinnati.
Picture: Phoebe admiring the tree in Goryeb's lobby
Phoebe has had a rough week. She hasn't been feeling the greatest since Wednesday, and each day she has been a little worse. More swelling, more discomfort, more irritable.
The girl who is always playing in dress up clothes, no matter how cold it is, she didn't want to get out of her nightgown or even think about dressing up.
The girl who finds magic and wonder in the Christmas lights and flurries of snow didn't want the lights plugged in and no longer wished for snow.
The girl who professes herself a "big girl" kept crying she didn't want to be a big girl anymore because it hurts.
Phoebe didn't have the energy to fight today.
She spent the day curled up in her favorite blanket, snuggled on my lap. Being able to escape into mommy's arms was the only thing that brought her comfort.
Because I document Phoebe's journey with pictures, I took out my phone to snap a few shots of how she was feeling and acting. As soon as she saw the camera pointing at her, she cracked a smile and struck a pose.
As hard as it was for her to find the energy to fight today, she still posed like the champion she is.
Nothing can knock the #Roar out of this girl!
Exactly two years ago today we got our first lab results showing Phoebe had health issues. Little did we know what was going to come.
Phoebe now has 12 doctors in 10 specialties involved in her care.
This little girl is a fighter!
We are a couple days shy of 2 years since these health problems began with Phoebe and the closest we have come to a definitive diagnosis that they are willing to put in writing is "an ALPS like condition without a name."
With all due respect to William Shakespeare, but he had it all wrong when he wrote, "What's in a name? That which we call a rose by any other name would smell as sweet."
The name of what Phoebe has changes and determines a lot of things.
We are doing the blood draw for the genetic testing on Thursday this week, and all we can hope is that those tests will give us some insight into what this is and what we can do for her.
Crafts are a big thing in our house. We love sitting around the table and making everything from drawings to gingerbread houses. This year I picked up some special ornament kits for the kids to make at our annual Christmas party.
The girls had so much fun making these ornaments and they did such an amazing job that we felt they deserved their own special tree to hang them on!
Sitting next to our big family tree is the girls very own tabletop Christmas tree decorated only with the ornaments they made this weekend!
We finished decorating our tree tonight and when we stepped back to admire it in all it's Christmas beauty Phoebe described it perfectly!
She said it was magical!
Our family always picks out our Christmas tree the Sunday after Thanksgiving. Phoebe was the most enthusiastic out of all of us! She was so happy to prance among the trees and breathe in the fresh pine smell.
The very first tree we saw Phoebe's eyes lit up and she announced that that was the tree that belonged at home with us.
We looked a few other trees, just to be sure, but none compared to that very first tree! We all agreed it was the one for our family!
Phoebe felt so special that she had found the perfect Christmas tree for us!
Phoebe was feeling well enough to go play in the snow with her sisters and help Natalie build a snowman. She named him Olaf!
Photos: 1- Phoebe making a snowball
2- Phoebe and her snowball
3- Phoebe and the almost finished Olaf
4- Naomi, Natalie and Phoebe with the finished Olaf
As we reflect on what we are thankful for this year, the top of our list includes each and everyone of you! Your unending support and love for our family, and especially Phoebe, has been immeasurable! May you all have a Happy and Blessed Thanksgiving!