A Month of Thankfulness

As we turned the calendar over to the hustle and bustle of the holidays in December, it reminded me that we haven't done a lot of blogs lately. It doesn't mean we haven't been busy, but we've been having too much fun and not enough time to share it all with everyone.

We are ALWAYS grateful for Grace snuggles!

We started the month with a routine check-up with Grace's neurologist at Children's Hospital in St. Louis. Although there's not really much to discuss, he spent a long time with us, and we know we have great support there when we need it. We also stopped by Washington University to see our friend, Dr. Kotzbauer and Zach Silvers, who are working tirelessly on research and funding for that particular INAD study.  Dr. Kotzbauer is always so kind and generous to make time for us when we are in St. Louis, and he said they continue to make good progress on the study.  Keep praying for that miracle!  Kyle and I both believe he and his team will  find something to help INAD kids someday.  We capped off the evening with a visit to Kyle's sister's house and dinner with his family.  It was a quick visit, but it's always just so nice to be together.

That weekend, we celebrated Grace's preschool class with a program at our church.  Once a year, the kids sing songs during the service, and it's always such a special time.  Even though Grace can't sing any of the songs, her face still lights up in a smile when it comes time for some of her favorites, which just melts my heart. She also really enjoyed seeing some of the kids in the afternoon class, who were in her class last year.  They all make a point to come and talk to her, and it's very special to us.

Grace and her friends singing in their preschool program.

We also celebrated Grace's great-grandma Nancy with a special ceremony with the Daughters of the American Revolution.  I became an official member this year in my grandma's honor, and they had a service at the cemetery to dedicate the DAR marker on her gravestone.  I'm even hoping Grace can join the DAR with me some day.

Celebrating Grace's great-grandma Nancy, and her dedication to the DAR.

November also means election month, and nearly every election we have voted in, we have taken Grace with us.  It's just important to us to do it together as a family, and we just enjoy taking Grace with us.  She did get to vote with her preschool class that morning, though. They voted on whether to have popcorn or cheeseballs for a snack that day. If only, all the choices in our elections were that easy.

This little "cheeseball" voted for popcorn in her class election.

At church on Sunday, it was time to pack shoeboxes as part of Operation Christmas child.  This year, Grace helped the other kids at our church pack 200 boxes to be sent to children all over the world.  She and I carefully picked a box and then I showed her all the items we were sending to some very special kids.  I picked purple things a lot, and Grace would just smile at me.  Somehow I think she knows how important that job was.

Grace loved helping me pack shoeboxes for Operation Christmas Child!

The middle of November brought us to Ice Cream Man, where I had an assignment.  Several weeks earlier I had done a story on an author who used to live in Litchfield and wrote a book on ice cream all over the world.  He was going to be signing copies in Litchfield, and taking the headache challenge, so we thought we would take Grace to meet him.  She even got her own signed copy of the book.  Ice cream has always been a bit of a special bond between Kyle and Grace, so it was really something fun to do together as a family.  And since Kyle had finished the headache challenge, he was especially excited to see that the author had signed Grace's book with a message that her daddy ate ice cream better than him.  We are always looking to share our story on this Grace-Filled Journey, and it was fun to meet the Ice Cream Gypsy.

Grace got her book signed by The Ice Cream Gypsy, Steve Simpson.

We also celebrated PaPa John's birthday that weekend!

 All too soon, it was time for Thanksgiving.  Ours started a little before the actual holiday with a program at Grace's preschool. Dressed as pilgrims and Indians, the kids sang a few Thanksgiving-themed songs and shared "thankful stew" with us after the program.  Our little Indian did a great job, and we were so excited to see her program.

Grace and cousin Izzy after their preschool program.

Family photo opportunity after Grace's program.

When the week of Thanksgiving rolled around, we felt grateful to share some wonderful memories with our families.  The night before, we enjoyed a quiet dinner with my mom and dad, before having lunch with Kyle's mom and dad and brother, Shane on Thanksgiving day. Before we headed for home, we stopped by my aunt and uncle's house to share a little Thanksgiving cheer there as well.

Sharing a meal with Grandma and Grandpa Galer before Thanksgiving.

Watching the Macy's Thanksgiving Day parade together!

Enjoying some of Grandma Kim's homemade pumpkin pie!

The end of the month even brought a date night for Grace's mom and dad.  It started with a basketball game for work, but ended with a trip to one of mommy's favorite restaurants, Bella Milano, and then a trip to the movies to see Fantastic Beasts.  We have really enjoyed reading Harry Potter to Grace, so it was fun to see the newest movie from the wizarding world.  Kyle and I feel very blessed to have the chance to enjoy a date night together every now and again.  It's always a lot of fun!

Date night selfie . . .

It was hard to believe how many things we did in November (I even had to look back through ALL the photos to remember).  But in this month of thankfulness, we are always so grateful for everyone who shares a special part of this Grace-Filled Journey.  

mlh

Celebrating Halloween Together

It's Halloween, and things are getting scary . . . 

Okay, so maybe not scary, but we did have a fun Halloween holiday.

Kyle and I always have some serious discussion when it comes to deciding what Grace will be for Halloween. After going through a variety of choices, like a mermaid or a truck driver (that one was Kyle's), we decided on one of Grace's favorite characters, Minnie Mouse. And we picked up her costume at Toys R Us one day when we were in Springfield for physical therapy.

Grace and her preschool friends at their Halloween party.

Grace's Halloween fun started just a few days before Halloween with a party for her preschool classmates.  We dressed Grace up in her costume, and she and the other kids in her class walked uptown to trick-or-treat at local businesses, including the newspaper office.  It was kind of cold that morning, so we sent Grace with a Minnie Mouse blanket, which covered most of her costume. After they got done on their walk, they enjoyed some Halloween treats in the classroom and watched "It's the Great Pumpkin, Charlie Brown."  I think she really enjoyed seeing all her friends in their costumes too.

Grace and her daddy being silly with Halloween treats.

The very next day marked Hillsboro's Halloween parade.  The chamber also puts on a trick-or-treat trail, where kids could visit local businesses in costume, but we opted just to do the parade this year.  Usually we stop by the newspaper office and Grace's physical therapist.

Our sweet little Minnie Mouse.

Family photo opportunity with Minnie Mouse.

Since Friday was such a pretty day, we walked from our house uptown in time for the parade route.  For the past two years, Kyle and I have built part of her costume around her stroller. And this year, we talked about making some big bows for Minnie's Bow-tique, but as we are in the middle of a home renovation project, we just didn't get that done.  It's also the reason we didn't get our pumpkins carved this year.  We even got a Finding Dory pumpkin carving kit and a pink flamingo pumpkin kit, but we will save them for next year.

Mommy and her favorite Minnie Mouse.

Hanging out with Grandma and Grandpa before the parade.

Because the weather was gorgeous, there was  huge turnout for the parade, and Grace loved seeing some of her preschool friends.  We walked along the parade route, and it was fun just to be together as a family.

It turned out to be a gorgeous Halloween weekend, and Kyle and Grace ended up riding with me to Litchfield to cover their Halloween parade on Saturday.  We didn't dress Grace up, but she still managed to get some candy from some people in the parade. As it gets harder and harder to put Grace in and out of her car seat, we decided against actually going trick-or-treating this year. Sunday was paper day, so Grace hung out in Raymond with Grandma Kim and PaPa Randy, who live out in the country and don't really get trick-or-treaters. Although Kyle did tell his mom that he put on Facebook Grace would be waiting to greet trick-or-treaters at their house.  I think he was only kidding though.

Grace got some candy at the Litchfield parade.

With our house in disarray, mom and dad invited us to dinner at their house on Halloween and to greet trick-or-treaters. After a delicious steak dinner, Grace got some new pajamas for Halloween, and we settled in to feed her.  Mom and dad greeted the kids as they came to the door, inviting in ones that knew Grace. Several from her class stopped by to say hi, and she really liked all the attention.

Grace loved visiting with her friends when they came to trick-or-treat.

Reading a new Halloween story with Grandma Susie.

Before long, it was time to go home, as another Halloween was done. Even though we didn't get our pumpkins carved, we still enjoyed celebrating together. We can't wait for next Halloween!  Kyle is already coming up with costume ideas that Grace can do with her baby sister. We will never let INAD slow us down from making memories together.

mlh

Another Grace-Filled Donation

One of the first contacts we made after Grace was diagnosed with INAD was to the NBIA organization. NBIA stands for Neurodegeneration with Brain Iron Accumulation, and their headquarters is located in Portland, OR, under the direction of Dr. Susan Hayflick.

Actually, it was our geneticist at Children's Hospital that made the initial contact for us.  When I contacted the NBIA, they already knew who we were, which was a nice transition for us in a very scary time.  I spoke on the phone to Allison Gregory, who works with Dr. Hayflick. She took some of Grace's information, and talked to me more about INAD and what it meant for our family.

We have kept in touch with Allison and the NBIA over the last few years, and this summer, she asked about some of our fundraising efforts. I told her we had been blessed to live in a very generous community, and that we had been able to raise around $130,000 in the two years since Grace has been diagnosed.

Grace was SO excited to help out with the OHSU natural history family study.

Most of that funding (around $100,000) has been donated to Washington University in St. Louis, MO, to Dr. Paul Kotzbauer. He and his research team are studying potential treatment options for children with INAD.

In the course of our conversations, Allison told me the NBIA was applying for a grant to start a natural history family study for PLAN families (and INAD is a type of PLAN). PLAN stands for PLA2G6 neurodegeneration, which refers to the gene that is affected. When it presents itself in infants and toddlers, it's known as INAD.

Allison and Dr. Hayflick were applying for a grant with the FDA, but were looking for the support of INAD families to get started, and they knew our INAD family community was strong. In the past three years, INAD families all over the world have raised more than $500,000 and have funded two research studies.  She said they were asking for the INAD families to pledge $30,000 for the next three years to get the study started, and they hoped to supplement the research with the FDA grant.

What this study will do is gather data and information, and lots of it about the INAD kids and their families. With two active research studies, the group wants to be ready for clinical trials when the time is right.  After talking to two of the other moms, we decided this was something we definitely wanted to get behind.  Our iCan for INAD crowdrise online fundraising account had close to $13,000 in it that we thought would be a good start. I said that Kyle and I had about $28,000 from A Grace Filled-Journey, and that we would fill in the remainder.

Dr. Hayflick and her team at OHSU, and they are grateful for the donation too!

So, this week, Grace and I got a cashier's check for $17,500, and mailed it to Dr. Hayflick at the Oregon Health and Science University in Portland, OR. It felt really good to be able to jump in and send funding when it was truly needed. Thanks to all of our generous followers, the NBIA will be able to get started on this study immediately.  We still hope and pray that the FDA grant funding comes through, and they should hear in December.

Kyle and I are still planning to financially back Dr. Kotzbauer and his work at Washington University. He will finish up the second year of his study in the spring, and is excited that he and his research team continue to make progress. They should be able to start screening some drugs in the coming months, and he plans to keep us updated on his funding needs.

From the bottom of our hearts, we could not be more grateful to each and every one of you that have donated to INAD research over the last two years. We want you to know what a difference your generous gift has made, and continues to make. Together we will #BeatINAD.

mlh