Saturday, August 16, 2014

SMA Awareness Day 16: Car show for Collie and hanging out

Poor Collie got a shower of formula today.  We vent his tube with a syringe that hangs from a microphone stand so that air that he might get in his belly from his bipap can escape.  Well, we were running his day food, which is thicker than the night food, and the syringe got stopped up and overflowed.  Yikes!  Gene found it and said he was lucky that he didn't drown as it dumped close to his mouth.  Scary!!

We were all slow to start today.  Boys slept in until maybe 11??  I don't know HOW we will get back into the swing of things when school starts in a couple of weeks.

Got the boys dressed.  Gene wanted to bring someone over to the car show across the road.  Colin seemed to be the most interested so he got put in his chair quickly and off they went.  Julia and I stayed with Casey.

I guess they had fun at the car show.  Colin was most interested in some car that had to stop quickly for a car turning into the show and had locked their brakes and make a squeal--go figure.  They looked around and Colin liked the blue cars :)  No fried dough so I didn't get a treat.

The rest of the day was spent hanging out, watching movies, TV, listening to music, etc.  Not much to write home about. Lots of laundry, washing suctions, etc. 

Random post from the past:  FYI-Gene was in New Hampshire at a motorcycle event with his friends for a couple of days.

power out and Dada is home!

cure sma
The boys slept well.

They didn't stir until arount 9 something. Julie was able to get a sample of junk from Casey's trach. It doesn't look bad but we're being cautious, especially since we're going to Karen's next week.

A little bit later the power went out. Of course, Gene is still in Laconia and we don't have the generator set up. We have the UPS system so Colin would have been fine for a while and Casey has the internal battery on his vent and his lithiums. But we checked Colin's kart and the inverter didn't work! That's the 3rd inverter we've blown this month! Long story but it must have something to do with the clips we're using on the battery attached to the inverter. We usually use the little clips instead of the big alligator clips but the end to those is broken, too. Gene has got to get on this!

So, I called CVPS and reported it. We were the first to report. Later on I heard that 182 houses were effected.

Casey still needed coughing and Colin hadn't done his, so we took Casey out to the van in his chair and used the battery and special inverter we have there. Thanks to Karen, we already had a cougher out there! He thought it was funny!

Of course, a bunch of things I wanted to get done today I needed to do on the computer, but that was out! I made some phone calls on the piano phone (yes, it's shaped like a piano and has keys for numbers!) since it isn't affected by power outtages.

I think the power was out for maybe 45 minutes or so. After I felt like it was going to stay on, I went out for a bit. I dropped the sputum sample off at Dr. D's, hit the library to get a couple of books (why is it that I never remember the names of authors or books that I want to read?? Got to put a list in my purse!) I brought in Colin's library card application and now he finally has his own! Hit the post office and had the PO worker help me with my miscelaneous stamps. I had piles of stamps that needed 'make-up' postage and they're finally all sorted out and will now be useful. Hit Hannafords for a few things.

Casey did his thing on the computer for a while. Colin watched Bedtime Stories and read some books.

I made some sausage gravy for Gene. Why? Not sure but Julie thought we should make something for Gene and she mentioned it and it's one of his favorites so she told me how. I'm sure it won't be as good as the batch that Amy made for Gene when she and Lily visited from Kentucky!

Then we all did some crafty things for Gene for Father's Day. Colin and Casey made magnets with their pictures. Then they did a special project with Julia. She had brought her wood burning kit and found a piece of wood like a plaque. They burned a saying into it which I will divulge after the boys present him with his gift.

Got an update from Katie on the mourning dove we rescued. She and her family drove it to VINS in Queechie. They examined the bird and said it was a fledgling and it had a hurt wing, leg and cracked beak! Ouch! I think they were going to put it under anethesia and do some more examining. They will hand feed it every hour and see how it does. Katie will keep in touch with them and pass on any updates to us.

I managed a quick read/nap.

Gene came home and has already messed up my neat house ;) He brought the boys and Julia some cool tee shirts. I got a purple, silky, sexy shirt that I will probably never wear. I guess he had a good time and ate a lot. One of the guys caught a huge cod fish (he had gone to Hampton Beach) and they ate that and he said it was great.

AC came for a bit. She brought Colin a DVD of animated Batman episodes. He enjoyed it and wants another one.

That's where we're at now.





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