Archives for posts with tag: eyes

img_4151We (Kevin, Grace, Graham and I) left for Minnesota on a recent Sunday. Our van was packed pretty full for a two-day trip. Grace doesn’t travel light.  (That’s a different blog post entirely!). Graham packed his own suitcase with the following belongings; a Santa hat, his Little Passports suitcase, slippers, his bug jar, books, sleeping friends, and Thomas the Train.

He was delighted to stay in the hotel that first night. He had a whole bed all to himself.   He swam in the hotel pool. Pizza was delivered to our room. Disney Jr. was on TV.

Grace was happy to be out of the car.

Grace had three appointments over two days. First, we followed up with the plastic surgeon about her eyes. All looks good. The swelling could last a few more months. We have one more appointment with the surgeon in January. After that, we will continue to watch her eyes with the eye doctor. If we see drooping again we go back to the plastic surgeon. Graham sat on my lap for the appointment. He played on the iPad at times putting his hand on my cheek and pointing my head down to see what he was doing.

After that, we went to Culver’s for lunch. One thing that’s different about Minnesota with Graham than without is our food choices.   When Graham is with us we frequent restaurants that serve chicken nuggets, chicken strips, pizza, or pancakes.   At this particular Culver’s we were able to watch the trains (the light rail) go by.   Graham led us straight to the tables by the big windows so we wouldn’t miss a single one.

We got to the second appointment. This one was with Grace’s urologist. The appointment has several steps; first an x-ray, then an ultrasound, then height and weight, then the doctor. Here’s where we had trouble. Grace needed to be cathed, needed meds, and needed food all at the same time. Graham wanted to be playing in the kid area on the other end of a large waiting room. That left one of us trying to get to all of Grace’s needs. We travel with a green bag full of Grace essentials. We put it on the back of her wheelchair. Things are organized and sorted into baggies. We need water – hot water for meds and some at room temp to keep her hydrated. There are gloves, lubricant, catheters, and wipes. Medicine, medicine crusher, syringes, and tubes are all in there too. Then the box of formula – that sometimes, depending on how you open it, drips a small amount of sticky white liquid on your hand, or the tube, but you are powerless to do anything about it because if you let go those few drops could become a lot more.

Graham was sure we were done after each step of the appointment. Because we were trying to meet both their needs we ended up feeding Grace as we talked to the doctor’s nurse and then the doctor. When we were with the doctor Graham did excellent. The doctor told us Grace will need a surgical revision of her mitrofanoff. This is not an immediate need. We have some tricks we can try to buy us some more time. Neither the doctor, Kevin, or I want her to be in surgery anytime soon.

Once we were done Graham was so excited. The Lego store at the Mall of America was next. But then we had to wait some more to schedule Grace’s follow up appointments.

All that done we left the hospital, went down the circular parking ramp, where Graham went “whee” and declared that he loved driving in circles. We were ready for his part of the trip.

He’d told us when we planned the trip that he definitely wanted to go the Lego store. It turned out he wanted to go to no other stores.   Lego store was done he was ready for his next objective. A train ride.

Grace was done being in her wheelchair.

img_4149After the train ride where Graham got to go under the airport on the light rail it was back to the hotel. He ate some pizza, played with his Legos, and went swimming in the hotel pool. He fell asleep in another big bed – all for him- watching TV.

We went to the breakfast buffet in the morning. He chose Cheerios. We talked with a few girls eating their breakfast. Graham and one of the girls had a jumping contest to see who could jump highest.

We packed up to head to Choo Choo Bob’s – Graham’s final objective. As we left the hotel room he made Kevin stay behind but led Grace and I outside to see the singing rock he and Kevin had discovered when we first got there. The singing rock is actually a fake rock with a speaker in it.   He was so excited to show it to us. He did a little tap dance as we listened to the music.

Choo Choo Bob’s was a lot of fun. We had to leave story hour after only 10 minutes to get Grace to her final appointment. Graham handled it well. Way better than is even fair to a boy at Choo Choo Bob’s. The last appointment was the eye doctor. Eye doctor appointments take at least 2 hours. Grace wasn’t being particularly cooperative. Graham actually scared the doctor when he popped out of the chair he’d been sitting in very quietly. After she’d recovered the doctor started talking about Grace’s next appointment. Graham interrupted her piping in that he didn’t think Grace should have any more doctor appointments.

Then, there were chicken nuggets for lunch with fruit punch to drink. We started driving home. Graham wanted to be home 20 minutes after we left.

img_4150I sat in the back of the minivan between the two kids as we drove home. There were moments when my shoulders held both their little heads. We’d done it. It wasn’t always pretty. Kevin and I hadn’t really unpacked any of the information we’d heard.   Having Graham there prohibits some of that.   But we’d seen a singing rock. Graham had gone under an airport. Grace doesn’t have to go back to Minnesota until January. We’d done it leaving no man behind. We’d done it together. I don’t feel like Graham should have to be with us every time, but sometimes he should be there. She’s his too.

A few months ago he’d asked me why anyone would stay in a hotel if their sister wasn’t having surgery. I tried to explain the whole concept of vacation.

Maybe he kind of got it.

I hope one day soon we can get him (and Grace) an actual vacation.

Joy

 

 

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img_4046Today Grace had surgery to lift her eyelids. They’ve been drooping, the right more than the left. Her brain and the muscles in her eyelids just weren’t working together. We were supposed to have the surgery done this summer, but if you’ve been reading along you know that this summer didn’t exactly go the way we planned.

We’d noticed almost two years ago that her eyes seemed a little more closed. We’ve been watching it with her eye doctor since then. We’ve watched her lift her head up less and less when she walks because she can’t see as well with her head up. We’ve watched her with her eye-gaze communication system. There are areas of the board she doesn’t look at as much, probably because she couldn’t lift her eyelids. We went through pictures from over the past few years with her ophthalmic plastic surgeon (still can’t believe she has a plastic surgeon on her team) and the progression was clear. It was time to do something about it.

The surgery was pretty quick – all the pre-op and post-op was what took time.

When I talked to the surgeon when it was all over he warned me that she would look rough for a few days. He told me there would be swelling, possible black eyes, and bloody tears. The only thing we can do is give pain meds, try and put ice over her eyes (not Grace’s favorite by any stretch of the imagination), keep her from rubbing her eyes too much (also not Grace’s favorite), and carefully wipe the bloody tears away to keep everything clean.

As they were putting in the IV this morning to give her anesthesia Grace looked me right in the eye. I promised her this was it – the last surgery we have planned.

We need this to be it. We all do. Months have gone by with us barely noticing. Graham yelled at me tonight for leaving him again. We were gone for 25 hours – and he had an absolute blast without us. Once he got over being mad he told me all about it. He needs us to not leave him. Grace needs to be in school. We need to be at work. The world is only forgiving of absence to a point.

I get that in the grand scheme of things this has been a small window of time.  But this small window of time has beat us up a bit. Physically, emotionally, spiritually, we’ve taken some blows. How to recover isn’t quite as easy as ice and pain meds.

The nurse in pre-op today called Grace a tough cookie. I told her she had no idea how tough a cookie Grace is.  The nurse in post op commented on Grace’s shirt. The word “Awesome” is printed over and over. “That’s a big statement for someone who’s gone through as much as she has,” he said.

“She never quits,” I told him. “She just keeps going.”

In the coming weeks (and maybe months) we’ll do our best to find our family some rest and recovery, so we can keep up.

Grace’s face will remind me of the need for rest the next few days I’m sure. When I put her to bed tonight I noticed the beginnings of what looks to be a black eye and I wiped up the bloody tears as carefully as I could.

But when her face has healed – she will be able to look up.

Joy