Archives for the month of: December, 2016

screen-shot-2016-12-31-at-7-11-35-amWhen my mom and dad were here a few weeks ago I handed them their copy of our Christmas card. My Dad looked at it for a minute and then said: “Dan Wardell made the Christmas card?” I only replied with a yes and a smile.

Our card has many pictures on it this year – having time to get a family picture taken just didn’t happen.   Kevin and I ended up picking some of our favorite pictures from the year to include.

There are multiple shots of Grace dancing.  Dancing continues to be her “thing”. We are incredibly grateful for dancing!

Graham is shown at the Iowa State Fair proudly holding his peanut butter sandwich on a stick. (They custom made it for him since he doesn’t like jelly).

There are pics of Grace and Graham both from the summer camp we attended as a family – one is a beautiful picture of Grace with a big smile on her face having ridden a horse after way too much time away from horses. The second is Graham on the horse; he decided that he would give it a try after watching Grace ride. I love when having a big sister works in his favor in more of a typical way.

One of our summer bucket list items, a trip to the High Trestle Trail Bridge is featured. When we made the list we knew Grace’s medical needs would be a factor in our ability to complete it but we had no idea how much of our summer would be spent with her in the hospital. There were several things on the list we didn’t get done during summer, several that we accomplished but we had to wait until fall and a few that we will start our list for next year with.  I’m so grateful that it wasn’t worse – the trip to the bridge shows we did manage to accomplish some fun!

Grace is shown getting her new bike on the Variety Club telethon this year.   We were all on TV.   Fareway sponsored the bike and the executive who presented it to her mentioned that she perhaps could ride her bike to the new store they were building in our neighborhood.   Grace picked the color – bright orange. It’s amazing all the ways a bike can be adapted and we are tickled to be able to take her out for a ride!

There’s a picture of both Grace and Graham in their Halloween costumes. They each had the opportunity to wear their costumes a couple of times. Graham chose Ryder from Paw Patrol and was always on the lookout for fellow Paw Patrol costumes when we were out and about. Grace we chose to dress as Super Girl. We thought the costume was perfect for her – she consistently displays a strength that I can’t help but admire.

There’s Graham grinning like crazy the night he got his first bike and we went to “Old McDonald’s” (McDonald’s) to celebrate.

We made sure there was one picture of each of us. There’s a picture of Graham and Kevin the day they rode their tag-along tandem bike to the “golden castle” – the Iowa Capitol Building for those of you who don’t speak Graham. They were exhausted but so proud of themselves for doing it; a nearly 20-mile bike ride.

The picture I’m in is of Grace and I the day we had her 10-year-old pictures taken at the Botanical Center. Her turning a decade in January was a huge deal for us. Epilepsy for 10 years. Appointments for 10 years. Doctors, nurses, therapies, the grind, wear and tear, and wonder for 10 years. With everything that’s happened to her medically in the last six months, it sometimes feels as though another decade should have passed by now.

And finally, there’s the shot of Graham and Dan Wardell. Graham is a big fan of Dan Wardell from Iowa Public Television. So much so that when we taught Graham the game 20 questions on the way to Thanksgiving he had selected Dan Wardell in his mind to have us guess. Kevin and I struggled to figure out who he was thinking. Graham ended up giving us a clue that he is a man who wore a cape but not a superhero. We were so impressed that Graham had thought of him – until then the game had been focused on cousins, grandparents, and kids in his class at daycare. Graham’s brain and what it is able to capture, process, and remember makes us marvel.

Graham went to see Dan Wardell several times this year including breakfast at the zoo, the PBS kids clubhouse kick off and Dan’s birthday party hosted at the IPTV studios. The one that meant the most to Kevin and I though was when Graham attended story hour in Marshalltown so he could see Dan Wardell on his reading tour of Iowa. That day happened to be one of the many days last summer we were dropping Graham off to be with my mom and dad because something was going on with Grace and she needed our full attention. Somehow that he was seeing Dan Wardell was a distraction that Graham needed, and made us feel better as parents that we weren’t neglecting what he loves and needs as we took care of all of Grace’s needs. When I called Mom and Dad later that day to check on Graham he was still talking about what Dan Wardell had told him that morning. I was so grateful for that.

There are no pictures of Grace in the hospital or even remotely medical on the Christmas card. As we look back over the last year that’s not where we wanted to focus. We wanted to focus on the fun, the inspiration, on what makes our family run outside of medical stuff: dance, bucket lists, summer camp, Halloween and fall traditions, grinning because you have your first bike, and carrying out the end of show advice of Dan Wardell that Graham repeats. “Get outside and play, read a good book, use your imagination, and eat healthy foods.” (Graham refuses to believe that Dan Wardell includes vegetables in the healthy foods category. We will keep working on that.)

Merry Christmas and Happy New Year from us!

Kevin, Joy, Grace and Graham

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img_1506As I write this Grace is sleeping in the tent we use for traveling. We are in a hotel room in Minnesota in December. It turns out all the tricks in the world couldn’t keep Grace from having to have one more surgery in 2016.

We had this really normal weekend at home; birthday cake for Graham, Christmas program practice at church for Grace and Graham, Kevin and I at the Civic Center to see the Carole King Musical, the actual Christmas program at church, and seeing the Nutcracker at Hoyt Sherman, complete with an intermission visit from some of our very favorite dancers.

The second we got home from the Nutcracker it changed a bit. We had to get Graham packed to go home with my mom and dad for a few days because Grace was having surgery. I’m very thankful that Graham hasn’t had to be there the day of any of Grace’s surgeries this year. The rooms where you wait with her before and with her after are small. Waiting rooms are hushed. There is a multitude of instructions. I have a hard enough time with my own feelings- as we wash her with the special soap, get her in the gown, answer the questions, sign the forms, talk to the doctor, the anesthesiologist, the nurse, try to get her to be still enough for the blood pressure machine to work, it’s so much.

While we were doing all of that Graham was building a sled for his Curious George and playing outside in the snow. He was hanging out with his cousins.  He was experiencing five-year-old boy perfection.

We drove north yesterday morning. The roads had been plowed pretty well, the trees were beautiful all covered with snow, the sky bright blue. It was crazy cold when we started and just got colder as got closer to Minnesota. So cold that we drove straight through not giving Grace her customary breaks to stretch her legs along the way. Our girl hates cold. Hates it. We did everything in our power to get her somewhere warm quickly.

When we arrived we hadn’t even checked in yet when Grace’s doctor – all dressed in her surgery garb- greeted us. She greeted us so warmly and told us she wanted to get Grace going early so she could get us home. We’d talk with her two more times – once more before the surgery where we showed her the pictures of everything that’s been going on with Grace’s mitrofanoff and we talked through how Kevin and I would take care of Grace for the next 7-10 days as she healed. We saw her again when it was all done when she explained to us what she’d found and confirmed that we were right to not wait to get the mitrofanoff revised now. It wasn’t going to get any better without a surgical intervention.

Grace took her sweet time waking up. The first time she woke she complained a lot. We asked that she be given some more pain medication. With that on board she slept a bit longer, and the second time she woke up she was pretty good. A bit groggy, but she made an attempt to grab some tubing and play. We got her dressed. Got her some formula in her stomach. Got her in her wheelchair and got her to the hotel. She played for a bit. Then we snuggled. She played a bit longer and then we got her to bed.

We have pain meds to get her home. There are antibiotics we will give her for six more days. There’s a catheter in her that we pray she doesn’t pull out. When everything’s had time to heal (it could take about 10 days) Kevin and I have a special syringe that we’ll use to take the catheter out of her and we will go about our normal business.

So for anyone who’s counting – that’s 4 surgeries in 6 months for our girl. That is way too many.   I for one am hopeful for 2017 that brings: health and strength to our girl, less worry and more together time for our boy, and energy, inspiration, and courage for Kevin and I to take our family out in the world and enjoy it.

Joy