Archives for posts with tag: Minnesota

FullSizeRenderI was having trouble starting this Christmas letter until I got on my phone and scrolled back through the pictures I’ve taken over the last year. I’ve taken so many pictures – a full year of little moments, big things, memories that make me laugh, and memories that make me tear up.

Graham’s love of sunglasses and selfies is in there. There are pictures of donuts and legos. There are pictures of his last days at Childserve’s Daycare where he was loved well for over five years. There are pictures of his first day of kindergarten.   There are pictures of him at taekwondo. I even have a screenshot of directions for tying a taekwondo belt.

Grace is also a fan of the selfie – but most times I’m in the picture with her to help her take the shot. There are so many pictures of Grace dancing. There are pictures of her swinging. Pictures in waiting rooms and doctor’s offices abound. There’s her first day of 5th-grade picture. I had her in a shirt that in pink shiny lettering said “This girl can” for that day. There are also a few shots of her in her “Nevertheless She Persisted” shirt. Finally, there are lots of shots of baseball. Her last game she played with either Kevin or I holding an umbrella over her head because it was raining – but she played anyway.

Kevin appears in pictures of baking with Graham, snuggling with either kid, flying kites at Johnston’s Kite Festival, sitting behind the steering wheel of the van, and across the table from me when we have had a chance to go to dinner just the two of us.

I’m usually paired with Grace or Graham in the pictures of me. There are a few from work. There are a few early morning shots that Graham took – that even though I don’t like I just can’t bring myself to delete.

What strikes me most in reviewing the pictures is that we really did life this year as a family. We went to Disneyworld-which was Amazing! (I have a crazy number of pictures from those days.) We also accomplished many of our summer bucket list items. We saw fireworks at the Golden Castle (that’s what Graham calls the state capitol building) for the Fourth of July. We had lemonade at Farmer’s Day. We went miniature golfing. We went to the Pappajohn Sculpture Park. We went to the zoo. We were at the State Fair. We went to family camp. We went on a vacation to Duluth Minnesota. We went to Reiman Gardens. We swung in the backyard and had one officially documented picnic. We stayed in a hotel or two. This fall we were at Living History Farms, we had family pictures taken, and we went to see Disney on Ice.

What all that tells me is that we are finding some balance between feeling limited and just going for it. We are keeping Grace both in the world and in activities that allow her to excel that are more specialized. I can see that Graham had 1:1 time with me – and I know that he did with Kevin. The two of them take Saturday morning trips to the Farmer’s Market that are well documented on Kevin’s phone.

I can also see our kids grow, which is ultimately their job.

We plan to spend the holiday season celebrating together – with a few movies, some cousins, some legos, and Disney princess dolls thrown in. I’m sure I’ll take lots of pictures.

Thanks to those of you who check in on us. Those of you who laugh and cry with us. We appreciate you.

From all of us to you – Merry Christmas!

Joy

Advertisements

IMG_5585I am looking forward to summer.

I want lemonade, fresh fruit, berry crisp, miniature golfing, and the feeling of the sun and heat soaking in.

I want less responsibility. Fewer things to juggle. A break.

To get to summer we’ve had to get past the last few weeks.

Grace had surgery last week in Minnesota to revise her mitrofanoff. We are hoping that will be her only surgery for the foreseeable future! She’s recovering well.

While we were in Minnesota Grace got all hooked up for an EEG. We were disappointed to discover that Grace’s EEG (a study of her brain activity) hasn’t shown any improvement since fall.   Her brain continues to experience a lot of back ground noise. We’d really thought it would be better after the addition of a new medication. In the last few months, we’ve seen better focus and more emotion. We’ve had her smile at us more. Her looks and eye contact have been so much fun. Her doctor reminded us that she’s not her EEG- if we are happy with what we are seeing that’s what counts.

Amid the highly scheduled past few weeks, we were alerted that there’s potential concern for her sodium levels so we are following up with some additional testing.

It’s easy to get trapped in the thought that Grace is all the things about her that we monitor and watch so carefully.   We have to remember she is none of those things. She’s a girl who loves to swing, loves music, loves to play, digs sparkle, and has a stubborn streak.

I saw that girl after her surgery. All snuggled under a blanket.

Before surgery I found myself overwhelmed with all the things about Grace. Her scars. Her medicine. Her past experience with anesthesia, etc. There is a crazy amount of information to pass on to the team of people we are entrusting with her care for an hour and a half.

I want a summer for Grace too. She deserves a break. We’ll never be rid of all the things about her. She’ll never drink lemonade or enjoy berry crisp. But she loves flowers, swinging, getting wet (as long as the water isn’t too cold) and being outside on a beautiful day.  We’ll work to spend the summer letting those things be the focus. I look forward to it.

Joy

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

 

 

 

IMG_3615The four of us are together. We are working to enact Graham’s “when Gracie is home plan”. Tonight that means watching the Odd Squad movie as a family.

It feels like she’s home just in time. This morning on the way to school Graham told me that he didn’t want there to be any more switching and no more visiting Grace. Kevin and I are beyond tired and need to be able to sleep for a whole night. Whether we were with Grace at the hospital or with Graham at home both of us have had a hard time sleeping. The world is moving on and we have to hustle to get caught back up. The van needs to be serviced, the new parts to grow Grace’s wheelchair are in, her new braces and shoes have arrived, registration for dance is coming up, Graham is moving to the pre-K room at daycare and Grace is starting 4th grade. Plus we need to get back to work full-time.

Grace isn’t 100%. She is going to need extra help and extra encouragement to get back her strength and stamina. We need to take her back to Minnesota to see the surgeon who is anxious to “lay eyes on her”. Our pediatrician wants to see her the week after that. We’ll be watching her closely to make sure she maintains weight, gains strength, and shows no further signs of blockage. Plus we have to learn how to use the Mitrofanoff.

There are also still things to process from our experience the last few weeks. People to thank. This has been draining but we have to keep going.

One of the first things we did when we got home was take off all of our hospital bracelets. We have been wearing the bracelets for 14 days. It was a constant itchy plastic reminder and symbol that Grace was in the hospital. She even scratched her face with hers. Early on when Graham asked me what it was for I told him that it showed the hospital that I was Grace’s mommy. He asked me to take it off a few days after that so that I could be his mommy again too.     They are all off now. We belong to each other – no bracelet necessary.

Joy

IMG_3496Today Grace was transferred off of the PICU to a general floor. While she no longer requires the care of the PICU staff it should be a good thing to celebrate but it was more of an upside down, crazy train commotion than it really seemed that it needed to be. We have found ourselves training nursing staff of Grace’s seizure types, lobbying for a seizure bed that had to be trucked in from Iowa City and working out all the kinks in medication protocols. It was far from smooth transfer to just one floor down. Thankfully both the PICU doctor and resident have personally checked on us to help smooth out the wrinkles. On the plus side, Grace now has a room that is technically a double, which is nice since Grace does not pack light.

We have a new plan worked out and if everything goes to schedule Grace will be discharged Thursday or Friday.

Graham has been a real trooper through all of this; we don’t give him enough credit. For the past two and a half weeks, his life and day-to-day routines have been thrown out the window and he just wants a regular “Mommy and Daddy Day with no hospitals or surgeries” as he puts it. We are rotating every other night at the hospital so he has contact with one of us every other night. He has requested several times to come to the hospital but in general, I think he likes Minnesota hospital stays better since it involves staying in a hotel with a pool and a shuttle bus ride to and from the hotel and hospital.

It’s interesting how Graham interprets being in a hospital, for him, there are toy rooms, books, and even an outside play areas. Today we pressed the nurse call button to request some new bedding for Grace while we were finishing up some of her cares. When a voice came over the intercom, Joy asked for some bedding and then Graham shouted out “and some cookies too!”

Kevin