First is the decision. Do we go or not? The weather was iffy. It could rain. Rain, shmain you say? Well, we have to think about the boys chairs and ventilators and Casey's DynaVox. Medical equipment, power chairs and communication devices should not get wet. Besides being very expensive, they could, obviously, short out and stop working which would be an expensive trip to the park AND the boys would be without until they were able to be replaced which is NOT a good thing.
So, we look at the Doppler radar and weigh the odds. We decide to go for it.
I put together a picnic. That's the easy part that you probably do, too. But, we also had to:
- change the boys from wearing shorts and put them in long pants.
- even though I made food, we had to pack the boys medical food and feeding pump into the special bag that hangs on their chair. Made sure to pack a syringe full of water in case Colin's pump became clogged (which it had earlier) because his food was especially thick today and wasn't running through the line like it should).
- put the vent cord and extra vent batteries in their ventilator bag (batteries only last so long and what would happen if for some reason we were delayed and couldn't get home right away).
- put the pulse oximiter on Colin's chair and strap it down. We don't use a continuous monitor on Casey but Colin requires that we monitor his heart rate and oxygen saturation 24/7. We have a finger tip pulse ox to check Casey as needed.
- need to put an artificial nose/HME on Casey's vent tubing. Since he is trached, the ventilator bypasses his nose which, for us, filter and moisturizes. Casey needs this to help keep his trachea and lungs clean and moist while he's not on his heated humidifier.
- need to put 'spit cloths' in each boys' bags. The boys each have a suction machine because they do not swallow but they do have lots of drool in between suctioning.
- we need to lift the boys into their chairs and position them so they are straight and comfortable.
- we need to strap them in with seat belts and harnesses.
- shoes--both boys use AFOs (ankle foot orthotics) to help keep their feet straight and to prevent foot drop. We decided not to put them on but just to have Casey wear socks. Colin hates socks so we wrapped a towel around his feet.
- neck collar. Casey sits up in his chair in the van and needs a special collar to hold his neck/chin safe.
- we Casey's tray on his chair, his DynaVox arm, switch holder and switch.
- have them pick out baseball caps and put them on :)
- wheel them down the ramp out of the house
I'm sure I'm over simplifying this but if our kids didn't have SMA and they were the same ages, 13 and 17, and we were all going to music in the park, we'd probably be able to say:
"Grab your rain jacket or wind breaker in case it rains (which they probably wouldn't do)"
"Let's go!" (that is if they would even agree to be seen with their parents in public and or didn't have other plans, ha ha)
Coming home and unpacking is a whole other story. We didn't have a night nurse so the two of us had to do all the unpacking and getting the boys ready for bed (a story in itself).
Anyway, we had fun. We had to stay in the van for a bit once we arrived because there was a light and steady rain. Julie found us and we all hunkered down in the van until it stopped. They had delayed the start of the show so we didn't miss but a song or two.
Found a good spot. Pretty far from the stage but a spot where we could see and weren't crowding anyone out. The boys were pretty good. Case did some of his yelling but it was hard for him to see his DynaVox in the sun(ish) and his thumb was tired and cold. Colin, in general, isn't thrilled with concerts like this (but he does love the ones at the fair) but he hung in there and did some singing :)
The band was Beatles-Mania. We had seen them a couple of years ago and they were better then. This year John was sick so some of the singing was weak. But they certainly played some good Beatles tunes but aren't all Beatles songs great????
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| Our little crew |
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| We got a rainbow! |
Aunt Chris told Casey that she'd buy him a tee shirt so off went Gene, Casey and Julie. They got their shirt and was able to catch the band as they took a break to do a clothing change and they all said "hey buddy" to him. He was happy and liked watching the band from up close for a while.
We heard some rumbles of thunder and had a drop or two of rain but that's it. Casey and Colin were worried--I guess they didn't want to be caught in a rain storm, but we were prepared (mostly. At one point, Gene went back to the van and got a couple of blankets because it was cooling off pretty quickly as the dark crept in.
We took off a bit before the show was over. Of course they started playing Revolution on the way out which is my favorite song.
Got home and did our unpacking thing, brought the dog out, fed cats, put a few things away, got the boys ready for bed and then got my mattress and bedding, book and book light and settled in on the floor of the boys' room.
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Random post from the past:
It was very nice to have the extra hour of sleep back. We all felt a little off today but I'm sure we'll get used to it in time.
Once again Casey was a perfect sleeper and Colin was a fusser. Moxie tolerated my getting up and down a hundred times and snuggled for most of the night.
Colin had a shower with Dada. I removed his Frankenstein black nail polish and he insisted I put blue on. Yes, he's an odd duck!
Here's a funny. On Friday, Colin was giving Priscilla a hard time and was not paying attention and kept asking for bipap when he didn't need it and carrying on. She told him that he had to finish his work and that if he kept being distracted she'd take off the nail polish on one of his nails. Well, he still fussed and asked for bipap so she used remover on one pinky. After that--he was perfect! Ha ha!
Nancy was here for the day. Casey had his tubby and had a trach change.
Then the three of them spent the rest of the afternoon playing computer--Toy Story 3 and Shrek the 3rd.
Gene worked on the windows adding foam and doing some stuff with insulation and that kind of stuff.
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