Sunday, January 25, 2015

Glow in the dark dance party

Quincy had her eighth birthday party last night. She wanted to have a glow in the dark dance party in the basement with her friend who shares her birthday. They both invited some friends and planned karaoke to go along with their glow in the dark decorations and black lights. It was a little crazy, but pretty low key since all we had to do was let them go wild in the basement. Quincy and Payton asked their friends to bring socks to donate to a homeless shelter instead of presents. They collected 138 pairs! Quincy is such a fun, happy, caring girl. It was so fun to see her around her friends last night.

Friday, January 9, 2015

Snow/cold days

After our long Christmas break Ava had a terrible time going back to school. She must have some powerful prayers though because we have had snow and cold days for most of the week. We had a blast playing in the snow on Tuesday, but have hardly stepped outside since. It is so cold!!

Such a happy girl when she is at home with her family!!
We worked hard on our tunnel. These girls crawled through it I don't know how many times.
Oh, and here is a picture of our New Year's Eve. Josh was gone, so I figured we would treat it like a regular night like I have in the past. But Liezl rallied her sisters together and helped everyone stay up and they did it. This was them when the ball dropped, two minutes later they were all sleeping. 

Wednesday, December 31, 2014

Christmas



By the time Christmas day is over, I am anxious to get everything put away and be done with the mess and chaos.  As I am looking through these pictures, though, I really do miss the fun time we had this year.  These girls made it so fun. They really are the best.
Cora and I spent Christmas Eve morning at the Hem/Onc clinic for an infusion. She had a blast with all of the extra attention and presents.
 Josh had Christmas Eve and Day off, which has not happened at all during residency.  It was pretty fabulous.  The rest of the day was spent together waiting until we could have our Christmas Eve dinner and open pajamas and the presents the girls bought for their sisters.

Christmas morning started early for us.  Quincy woke up at two ready to tear into her presents, but was sent back to bed.  She came down again several times hoping for a different response.  And then came with all of her sisters at six with strength in numbers. 
The theme of this year was Nerf and Legos.  We spent most of the day in pajamas building and shooting arrows all over the house.  We also had the Missionaries over to talk to their families on skype and eat with us.  



Sunday, December 21, 2014

Christmas dresses

We have had a sick, sick week.  It started out with Cora and a trip to the Children's hospital with the flu.  And now that it has been through all of us, we are ready to bring on Christmas!!!!  I debated yesterday if I should sew the girls' Christmas dresses that were waiting to be made.  Even though they were quickly sewn together and a little rough around the edges, I am glad I made them.  It was a fun project and the girls looked darling!








These cute girls have been working hard on a service project this month for Christmas. We were looking at the LDS Church's humanitarian website and came across a movie of a woman from Russia who received a blanket donated from them.  We were touched how grateful she was to receive such a simple gift.  Each of the girls picked fabric for a crib sized quilt and they worked for three weeks on them.  I was so impressed with their patience and dedication to their project.  As they tied, they discussed where their quilt could end up and how happy the baby is going to be when they get it.

Liezl and Quincy and I went to the Nutcracker last night. Liezl was still feeling feverish and crappy, but was not going to miss and evening with her BFF.  

The one good thing about being sick is the reminder how lucky we are to have healthy bodies!! I am so glad that is all over with.

Saturday, December 13, 2014

Silver and Gold

Liezl has been asking to get her ears pierced for about five years now. She has always loved the idea of being grown-up and fancy. I told her when she turned ten she could, but we were in the middle of soccer on her birthday so she had to wait. Today was the day we took the trip to Claire's!!! She was super nervous, so I got mine pierced too for moral support.
She tried so hard to act calm and happy, but I could tell it was a little traumatizing. Tonight at the dinner table Liezl was listing off all the hoop and dangle earrings she can not wait to buy. It was funny watching Josh's face while she was talking a mile a minute. He is not a big fan.
Here we are with our new earrings. Quincy's photo bomb in the background turned into lots of silly pictures afterwards. I love these crazy girls!


Monday, December 8, 2014

Gingerbread and cocoa

We made our gingerbread houses yesterday. Every year I get frustrated baking and assembling the houses and swear I will never do it again, but when we start decorating I change my tune. It is such a messy process, but I guess it is worth it.





Liezl hosted a hot cocoa party this weekend. She planned it all, the activities, invitations, crafts, and treats. The girls she invited were all very well behaved and grown up. I am used to birthday parties with smaller kids where it is like a whirlwind of chaos. It was fun to watch these girls sitting around the table chatting while carefully decorating cookies and crafting.

Friday, December 5, 2014

OMS

This post is to help explain the status of Cora's health.  I have read through a lot of medical studies and explanations of her condition and can follow along with them fine, but I have a hard time explaining it.  So here is my attempt to fill you all in with what I have learned.

Cora has a rare neurological autoimmune disorder called OMS.  When Cora's antibodies were attacking the cancer tumor in her spine, they got too aggressive and started attacking her brain cells which resulted in damage that produced opsoclonus-myoclonus.  Opsoclonus is eye jiggling movements and myoclonus means involuntary muscle twitching.  This is a super rare disease affecting 1 in 10,000,00 people per year; only 2% of neuroblastoma cancer patients.  Because of these symptoms, we were able to find Cora's cancer in the early stages which saved her life.  All OMS patients suffer from lifelong issues that impair motor, cognitive, language, or behavioral development.  Each person differs with severity.  When Cora was first diagnosed, she lost all fine and gross motor control and we were told it might not ever come back.  We were also made aware that many kids do not speak at all because of where the brain was attacked.  Thankfully, Cora has been doing wonderfully!!! She is right on track as far as physical abilities, and is improving with her speech.  She has been on steroids and a monthly infusion of IVIG (good antibodies) to keep her symptoms at bay.  Relapse of the twitching and eye movements are common.  We have already seen them come back twice, which is remedied by increasing her meds and a month of chemo infusions.  As far as her cancer goes, (fingers crossed) it looks like we are in the clear.  We will just have to have routine scans to make sure it does not come back.

I get frustrated with steroids, am sick of all of our visits to the children's hospital, and worry way too much, but she shows me daily how to be a better person. She is patient and happy and strong and loving. I am thankful for her example.