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. 

Saturday, November 22, 2014

It's beginning to look a lot like Christmas

Last night we went to a Christmas party put on by make-a-wish. It was such a lovely night. Very kid friendly and low key. Being around so many sick kids made me feel thankful for how well Cora is doing.

This week brought cold weather and snow. The girls were thrilled with their first snow day if the year. I think kids in snow gear look so cute. The wet gear heaped in piles afterward is not as great though.

Saturday, November 15, 2014

Soccer is finally done!

Our soccer team made it to state, so last week we braved the cold weather and headed toward Cincinnati. They did great, and thankfully we had a quick loss so we did not have to hang around all weekend for more games.  
Quincy was an impressive little second grader keeping up with third, fourth, and fifth graders.
Liezl performed in a vetran's day program and had a solo in the Star-Spangled Banner. She is such a happy, sel-motivating girl. When she has a vision, she goes all in. She just started a blog: 10wildflower.blogspot.com. You should check it out and comment. She would be thrilled.
I love her.
Cora is still not sleeping well. I am excited when she gets older and I can put her in her own room with a tv, toys, books, or track she can run laps on. Until then, we have fun taking pictures with plastic frogs on our heads.

Wednesday, November 5, 2014

Teeth and scans

Kids are hard work. Really hard. It has taken me a while to decide if I should document our excitement from last week. We are all happy with how things have worked out, so here it goes. Monday was a long infusion day at the hem/onc clinic with Cora and then Tuesday we went to the base to get her front teeth pulled. The medicine she is taking has made her teeth and bones weak. That, along with feeding her anything she wants in the middle of the night while she is running laps around me has made her teeth rotten. Infection was the main concern, so they had to get pulled. She only had shots to numb her mouth and me as a papoose board to get her through it. It was pretty traumatic for both of us. Her face got pretty bruised from holding it still. This picture is later that day. She is so amazing. I think she does not realize she is supposed to feel terrible, so she smiles and plays and stays happy.
 Her smile has never showed her teeth much, so you can't really tell. Eating has been a little tricky, but she is figuring it out. Some of you are asking for pictures. Her sisters ask to see her teeth all the time, so she is used to pulling up her lip on request. There is literally nothing to see though.
Ava was the next lucky girl to spend time at the children's hospital. She has had bladder issues for a while and has been on medicine to help prevent her frequent utis. She had to get scans down under to check her anatomy and reflux (when her urine gets pulled back up towards her kidneys resulting in bacteria). Ava has a strong will and stubborn personality so I knew it would be a fight. She was only given laughing gas while we pinned her down to shoot dye up inside her and keep her still for pictures. I think it was more traumatic than the day before with Cora's teeth. She faught like a bear. The results showed that her kidneys are pretty angry and her reflux has gotten worse. She has been given another medicine to take every day and might have to get surgery in a couple of years. She has been happier with the extra meds and has got to be the strongest five year old ever. Seriously, she should be put in a strength competition of some kind because she gave four adults a mighty workout trying to keep her still.

Even with all the stress they cause, raising my girls is the best. I cherish the times when we pile together to read stories. We fall in love with the characters and like drawing what we think they look like. 
I love seeing them interact with their friends. I love seeing them develop talents and working hard. Here is Liezl and Quincy with their buddies at our soccer practice last night. It was dark and pouring. We had a blast!!