Wednesday, July 24, 2013

A movie, peeing in the parking lot and chuck-e-cheese; all in one day.

Today Wyatt lays sleeping, tucked into the pull out bed that is currently taking up nearly our entire living room. Jilly is sprawled across the bottom of the bed, laying on her belly with her chin propped up by her hands and intently watching a cartoon. Maggie is upstairs talking on the telephone with a friend...again. It feels much like a normal summer day in our house. The hospice nurse came this morning, she ordered antibiotic drops for Wyatt's infected eyes and we discussed a few key points.

If you read my post from yesterday, you know it was Wyatt's birthday. The day didn't start off too well. Wyatt was sleepy and really not feeling well. We were hoping we could do something fun, but he made it clear that he wanted to sleep.

We could have left him sleep all day. I think he probably would have. I thought hard about just giving in and letting him lay in his bed. 'He's had enough,' I thought. But then, during a brief moment that he was awake, I asked if there was somewhere he wanted to go. He opened his eyes just barely enough to look at me and said "somewhere fun." We talked of the movies, he's been pointing out the commercials advertising the movie Turbo. Then he suggested "chuck-e-cheese." Ohhhhhh, chuck-e-cheese...not my favorite place to go. But what's a Mom to do. 

I said, "You want to go to chuck-e-cheese?" and he responded, seemingly a little surprised that I even entertained the idea "Yeah."

So, we conjured up a plan, printed out chuck-e-cheese coupons, turned down the alarm volumes on his pulse-ox machine and packed up my boy who has been working extra hard at breathing on his own. His perfusion was awful, his color was less than stellar and his oxygen saturations have been better...but, live to the last breath, right?


Our first stop was the movie theater to see the 4:10pm showing of Turbo in 3D...because those glasses, even if his eyes are physically unable to see in 3D, make the movie sooooo much better. The price, not so much.

We had the entire theater to ourselves, which we decided was a birthday gift within itself. Jilly stood up and danced during the songs, I took a couple pictures, Wyatt reminded me to silence my phone because the movie screen said to and whispered a nearly inaudible whisper when trying to tell me something through the movie, even though I told him he could talk normally because there was no one else to disturb in the theater. At the end we decided Turbo and Wyatt have a lot in common...they never give up!

After drawing up a couple IV meds and starting to infuse them we drove to chuck-e-cheese, where Wyatt peed in the parking lot.

Yes. Yes, he did.

His foley bag was very full (Thank you, Lasix) and again, what's a Mom to do. We opened the valve on his foley bag and decided we weren't even going to track his output for the day. We're living on the edge. ;) He and Jilly found it funny, while Maggie stated it was "disturbing." Eh, I guess we could have found a bathroom, but we were running on borrowed multiple ways. It was a time to make it work.

I then took a deep breath and we entered chuck-e-cheese. My biggest worry was that many of the games would not be wheelchair friendly and he'd be unable to play. It's a huge disappointment to him when he's limited by his need for the wheelchair. And it often casts a dark shadow over whatever fun we did have. To my surprise, most all of the games were very accessible. Most of their games are set low to allow small children access to the buttons or controls to play, which is what Wyatt needs while in his wheelchair too.

Chuck-e-cheese was a big hit. His favorite part? Riding the roller coaster simulation ride. We transferred him to the seat, buckled him up and let him ride as many times as he wanted. Maggie and Jilly had a great time with their little cup of coins to use as they wish, as well.

As we drove home I asked if they had fun. The girls each responded "Yeah!" and Wyatt began to cry and said "I had so much fun I'm crying!" They seemed to be happy tears he was crying. And he then added, in a somewhat grossed out way that only an 11 year old boy could perfect, "I can't believe I'm crying!"

It was a day to go for it and that's just what we did.

Thank you all for the birthday wishes, love, prayers and support. It's very thoughtful and means a lot to our family. I know there may be times you feel you don't know what to say- I don't either, sometimes. But it means a great deal to know you are there. The comments, emails, texts, Facebook messages and such all help to keep us going and lift our spirits. Thank you!
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  1. Happy birthday Wyatt! What a beautiful and amazing day for your family. No words, just really big smiles with a heavy heart.