5 prescriptions later...

Took Colin in to see Dr. Queyquep this morning.  We came out with drops for his eyes, drops for one ear, antibiotics for the slight crackles in his lower lobes (trying to ward off a true bronchitis), possibly two nebs for his lungs (wanted Xopenex but it requires a prior auth so we may have to do one or two nebs of Albuterol before we get the Xopenex).  And, we're to give him probiotics twice a day.  Hmm, I guess that's it.

Funny thing is, I thought he was much better today.  I thought we'd just get something for his eyes, which are red, watery and producing a goopy green discharge.  But one ear was full of debris, very wet and retracting.  I asked her what retracting meant in this case and she said that it was kind of pulsating due to the pressure.  Ugh.  And, since he was starting to have some crackles, we want to ward off any secondary infection.  Oh, and his temp was 99.9 at the office and he was still under the influence of ibuprofen, so I guess we'll keep up with the rotating schedule of Tylenol and Ibuprofen. 

As promised, I got him a chocolate munchkin from Dunkin Donuts so it made him happy. 

Long story, but he was supposed to make salsa today during his Unified Arts class with Mel.  But Mel had to cover for a para that was out, so we decided to let Colin sleep in a bit and have Priscilla come at her normal 8:50 time.  He'll get to do his 'cooking' tomorrow.

Casey is off to his outing to the UVM campus to visit the Francis Colburn Gallery (William Science Hall) and the staff art exhibit currently showing at the Davis Center.  I hope he has fun.  It could go either way--you never know with him!!

........................

Casey was nervous when he first got to the gallery but then he settled in.  Julie sent me these pictures. 

He said he was confused about the art.  The picture of the brain interested him but 'confused' him he said.  At least he was commenting on the art, which is what we want :)

SMA Awareness Day 24: Zoe's Race

We did it!  It was worth getting up extra early to make it to Burlington for about 8:45 AM.

I had tried to get things organized but getting home so late last night, I didn't feel like doing a whole lot.  So it was a scramble to get things, unpacked and repacked.  Nancy had came around 7:45 and we started getting the boys up and ready for the outing.  They were not happy but survived :)

Oakledge is a beautiful spot.  We don't go very often but it's where the accessible tree house is so we do like to come down when we can.  Picture perfect day, although it was HOT already.

Nancy and I worked on registering (I had only figured out how to register myself on line) and get our numbers and shirts.  Kind of confusing and crazy but we got it done.

We hung around, did a little carb loading, ha ha, for our walk.  It's a perfect set up for a walk/run.  There's the pavilion with bathroom facilities, picnic tables, and power.  There were bagels, and cream cheeses, cut up oranges, coffee, water, etc.  There were several families with special needs there.  I recognized a couple.  Spoke with Cathie Buscaglia, who is the Director of Children and Family Services at the Howard Center.  The Howard Center teams up with Zoe's Race and raise funds for families in the Howard developmental program to get modifications done to their homes to make them accessible.  This is how we got our nice wooden ramp out front.

Casey had a mini meltdown but recovered.  He couldn't really use his DynaVox so I think he was pissed.  

They had a corny band playing and a young man sang the national anthem.   Then those doing the 1 mile lined up.  It hadn't been advertised as such, but the 1K was a run BUT people walked as well.  There were mostly kids doing this one and I don't think it was a timed race but I could be wrong.  We stayed in the back of the pack and took our time. Gene drove Casey in his power chair and was ahead of us.  Nancy, Colin and I took up the rear.  We took turns PUSHING Colin in his manual chair and it was pretty tough.  We were on a paved path, which was nice, but Nancy and I are not the most in shape people so we struggled.  AND, did I say, it was HOT!  

Somehow, Gene missed the finish line with Casey but Colin, Nancy and I made it across and Colin got a medal :)  I made Gene and Casey go over and do the finish and have Casey get his medal. 

After the race we went to the tree house but didn't stay for more than a minute because there were two men in sleeping bags laying there with bags of stuff and it didn't seem quite appropriate to be there. Bummer.

So we waited for the 5K runners to come back.  In the meantime we had some Ben & Jerry's ice-cream, and Gene had some yummy corn on the cob (I had a bite).

Then it was time to go.  We were hot and pooped out.

At home we just hung out and relaxed.  I had to prepare formula.  Nancy did the beds, and that was about all that got done.

SMA Awareness Day 23: Daughtry and Goo Goo Dolls at the fair

We're happy and pooped!  We all had a good time and had no medical snafus (Colin did not get bit by a pony, we didn't forget any supplies, we didn't drop any respiratory stuff on the ground, the formula ran well through the pumps and we didn't run out of battery power) and all went well.

We made to the main area so we could see the parade.  It's kind of cool.  We like seeing the draft horses, and cows, and oxen and little cars and carts wind their way down the lane.  There were two HUGE oxen being herded by a boy who couldn't have been more than 12 years old!  The draft horses took up the whole pathway and acted perfectly.

There just happened to be a Mr. Sausage booth across from us so I had a sausage with peppers and onions and Aunt Chris had a hot dog.  Gene played the martyr and didn't get anything.

Then we were off to check out the animals.  All of the tents were crowded but for some reason the bunny tent was extra busy so we skipped for the time being although the boys were mad.

 We all loved the sheep.  There was one little guy who kept bleating indignantly and it was so funny!  Colin really liked that one.  Some of them were super friendly and we got to pet them and skritch their faces.  They were just like dogs :)



We hit the expo buildings and saw the Christmas trees (Colin, Aunt Chris and I loved them and they smelled so good!), all sorts of flowers, vegetables, and other exhibits.  Wish we could have spent more time looking but the boys got restless.  We enjoyed the sand sculpture.  This year's theme was The Wizard of Oz.

We doubled back and saw the bunnies.  So many cute little bunnies, and a couple of cute huge ones.

Gene suggested we get ice-cream from the Vermont barn and Aunt Chris and I concurred.  This is another tradition we have--each year we go and get local made ice-cream at the dairy barn.  I got Maple Walnut and it was delicious.

Then it was time to head over to the grand stand to get our seats for Daughtry and the Goo Goo Dolls.  It was crowded as we headed over but got in quickly and into the handicap section.  We love where we get to sit.  It's not super close to the stage but close enough and we have no one in front of us. It's a covered boxed area and people just sit/wheel in wherever they want.  I was surprised that there were a couple of groups already in there as I hadn't expected that there would be so many handicapped people seeing either band.  I know that sounds weird, but I mean, when we saw Elton John I knew there would be tons of people (old people, ha ha) but there never are many handicapped kids that come to see the shows in our experience.   One couple that was there let us move into a better spot while they moved over.  We take up a lot of room, which I feel badly about, but we try to be as efficient as we can with our space.  Colin has to sit kind of sideways in his chair because of the way he lays down and the way his head is.  So I usually sit behind him so we don't take up as much front row space. 

It was kind of boring to wait, especially since Nurse Julie wasn't there as she and Bill were catering two weddings.

But, finally, Daughtry came on.  Yay!  He came out fast and hard with lots of energy and the crowd loved him.  Gene was surprised that he liked him as much as he did.  He doesn't know much of his music, not like Casey and I do, and he ended up enjoying him.  We all really liked him and had a good time. 

 Near the end of Daughtry, I got a call from Nurse Julie and she said they were done with their weddings and they were on their way to the fair.  Whoot!  She and her friend, Kelly, came over and hung for a bit.  Casey was kind of grumpy and restless so they all decided to walk around.  Colin and I stayed and listened to the Goo Goo Dolls.  They were good and played good songs, but we're just not as into him as we are to Daughtry.  I was trying to figure the crowd out. There were definitely people that were obsessed with both bands-- you could kind of tell by the way each group was dressed,  ha ha, but everyone had a good time, for sure.

The crew came back from their walk in high spirits.  They had left the grand stand area and went to the Halverson's tent and had a beer :)  Casey thought it was the funniest thing in the world!

We were going to buy tee shirts but they were $30 each so we declined.  I'll try to find some on Amazon or Ebay because both boys really wanted one.  Yes, even Colin who doesn't give a care about cloths wanted a Daughtry shirt.  Note to self:  don't forget to try to dig up some shirts on line.

It looked like we were going to be later than we thought so I texted Deb.  She tried to call me but I couldn't hear a thing.  I called her as we were pulling out of the fair grounds.  We left right before the last song and got out of the grounds pretty easily.  If we had waited any longer we would have been in a snarly traffic mess forever. 

We beat Deb home.  Aunt Chris left.  Gene took Jaxon out.  We put the boys into bed as quickly as we could. Deb helped finish up getting Casey ready for bed.  I was up in bed and still hearing Casey at midnight but I think they both were asleep soon afterwards.



I'm adding some short video clips of the show in case anyone is interested. 

SMA Awareness Day 21: Dentist for the boys

I try to make the boys' appointments so that they can go at the same time or one after the other.  Definitely like to do that with the dentist because we have to go to North Ave in Burlington, which is kind of out of the way--no good way to get there.  The only time we could get before school for the both of them was 9:00 AM!! 

So, we did it.  Good practice for getting the boys up early.  Of course we were still late getting out of the house...9:38 instead of 9:00 but we were only a couple of minutes late.

They took Casey right away, which was a good thing because there isn't a lot of room in the waiting area.  All looked well, well for Casey's norm.  He has no cavities, no tartar, no calcium build up, great gums, and awesome salivary production, ha ha.  Of course, he also has an open mouth posture, a very high and narrow palate, excessive gum tissue, crowding of his upper teeth, no sign of molars, and staining on his front teeth.  We could probably do some elective things like pull some teeth, expand his palate, remove some gum tissue.  But, much of it wouldn't do anything medically helpful for him and the problem would probably return after a while--meaning, if we removed some of his extra gum tissue, it would most likely grow back over time.   So we just monitor for any problems and check the health of the existing teeth and gums and he's good to go.  Dr. Bookwalter does polish his front teeth but it doesn't help much with the staining because it's not stained from food/drink; it's stained from the air and saliva drying on his teeth because of the way his mouth is.  We're okay with how he is. 

Casey actually likes the dentist and the joke and laugh a little. 

Colin was next.  He was happy and in a good mood but carried on some about his teeth hurting...Showed Dr. Bookwalter where his tooth had just come through--it's a canine tooth on his right side and the left has still to how it's head.  He's not lost any teeth since his last visit.  Still has two baby teeth to come out but they are not loose at all.  Colin's teeth and gums looked spiffy, too.  So glad we've taken the time to do a good job on mouth care twice a day since the boys were babies.  I'll bet there are many kids out there that are the boys ages that don't brush their teeth one time a day, let alone two!

Gene wanted to get back on his computer for work so we didn't make any pit stops on the way home, boo hoo.

Casey is still in his chair watching a movie with Colin who is back in his bed.  Me, I'm going to take a little nap since we have the boys tonight and tomorrow night.  Julia is coming later and we have to work on cleaning the wish room (the end where there beds are) because school is coming up VERY quickly and we'll have no time to do it because Colin will be in there all day for school starting Wednesday!

SMA Awareness Day 19: Hair cuts and Christmas Tree Shop equals tired Mama

School is coming up VERY quickly.  The boys needed to have their hair freshened up, well, in Colin's case, hacked for the beginning of the school year.

Look at all that hair!!

Gene was already up and out when I got out of bed this morning at 7:30 which is super late for me getting up and super-duper early for Gene even opening up his eyes, lol.  Checked in with Nurse Julie and Nurse Nancy (who is back from vacation) and we decided to go for the outing to get hair cuts.  Julie called the hair place and left a message to call us back so we could try to get 2 appointments at the same time. 

We all hustled to get the boys up and ready.  And, I had to get myself ready and take care of the dog and cats who were all very demanding.  They didn't like that Gene had gone out so early and they knew that we were getting ready for an adventure.

We got appointments for 11:00 the hair place in the blue mall--I forget what the name is.  We cruised down there and made it early.  Nancy took her car since she only works half a day for Collie on Tuesdays.

It's kind of stressful to get the boys hair done.  Casey was in his power chair so Julie took off his head rest and held his head.  Casey has zero head control and cannot hold or move his head.  Colin is in his chair that lays down so we have to lift up and hold his head and flip it from side to side as needed.  And, we have to contend with secretions--Colin is super spitty when he's not on his humidifier so we had to stop and suction.  Gotta give the hair dresser credit because she didn't flinch when she had to skirt around his spit puddles :)  I usually run back and forth between the two boys, taking over for holding heads and suctioning and repositioning.  Heads are heavy!!!  And, hair ends up everywhere.  All over their faces, and in their ears and shirts and chairs, and in their bags that hang on their chairs, in Julie's purse, ha ha, etc.  We used a hair dryer to try to loosen up the hair but didn't make a lot of progress.

I'm sure they weren't very comfortable with all the hair on them but they wanted to go to a store.  We had thought of Trader Joe's and Pier One but it seemed like a pain to get them back in the van and strapped down just to drive two minutes down the road (but too far and awkward to walk) so we decided to his Dunkin Donuts and then go to Christmas Tree Shop.   So that's what we did.  Nancy decided she needed to do some shopping so she met us at Christmas Tree.  She brought Colin around the store so that I could browse childless, which is very nice.

Colin picked out a Halloween light up skull because he was very excited to see all the Halloween decorations in the store.  Casey found a book.  They also found a Road Runner/Wile E Coyote DVD.  I got a bunch of odds and ends like a fall table cloth, fall flag, some K-cups, oh, and some other stuff. Both boys said that they had fun in the store, so that's a good thing.

Headed home.  Let Jaxon out of his crate and gave him some Frisbee time.  He's such a good boy in his crate while we're gone (at least we think he is!).

Colin watched some cartoons while Julie gave Casey a shower.  Then it was Colin's turn for me to give him one.  Gene came home while we were showering and helped me finish up Collie.  The boys got in some lounge wear and looked handsome and fresh.

Aunt Chris came and wii'd with the boys.  Casey Google mapped.  He was excited because he had to use Colin's DynaVox and it has a better processor so that he gets into some version of Google that he's able to get into the ocean!  They were playing an ocean wii game so I put in the Pacific Ocean for him.

We had some fresh pineapple that Gene had cut up for me so I made a serving of caramelized pineapple, from a recipe that I had, and put it over some Vanilla Bean ice-cream that I had.  Delicious!!

Bedtime.  Here are the boys with their new cuts.

SMA Awareness Day 18: FSMA Walk N Roll??

Nurse Karen came today for a couple of hours with Nurse Julie and then she stayed until 9 PM on her own.  She and Gene held down the fort while I went to 99 and met with Heidi Roy from Families of SMA (FSMA).

Heidi is the fundraising coordinator for the New England area.  We're hoping to get a Walk N Roll going in Burlington.  So she came up this way to check out the area and chat about getting stated.  We were supposed to meet with Cari K. but she ended up not being able to make it.  I think Heidi said there are only about 5 families registered in Vermont with FSMA.  There are several angel families in the area and then a couple of families with type 3 kids and a type 2 family as well.  I now there have got to be more--but not that I'm aware of.  I've always made sure to let our pediatrician and specialists know that they can give my name out to anyone that is diagnosed.  I've only had two calls over the years. 

Anyway, we met and chatted for about two hours.  She was very interested in hearing our story and learning more about how SMA affects families.  I could tell,  just from this one meeting, that she is truly dedicated to raising awareness about SMA and finding a cure.  I didn't even pay much attention to the food, but I think it was good, lol.

We're hoping to do a Walk N Roll at Oakledge Park in Burlington.  It's a perfect spot and many fundraising walks and runs take place there so it would be easy (well, as easy as starting a walk could be) to figure out the best way to set things up.  Heidi was able to check it out a bit before our dinner and she was pretty excited about how beautiful it is there --and there's also the accessible tree house.

So, next time we hope to meet with a couple of more families and do some more planning.  Looking forward to spending some time with local SMA families.

I got home in time for bed.  Thank goodness I did or Colin would have had a fit!!  I guess Karen and Gene did okay entertaining while I was gone :)

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!

• Jun. 19th, 2009 at 5:08 PM

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.

Tags:

• laconia,
• mourning dove,
• power outtage

SMA Awareness Day 15: Nobby Reed at Westford Green

• Couple of things to mention that are mention-worthy.

• Julie tried on all of Casey's pants/jeans/lounge wear and we ruled out three pairs and tagged three pair to be re-evaluated in December :)

• I made brownies with chocolate chips and vanilla chips.

• Gene made some sort of green/yellow bean with bacon and potato soup.  I guess it's something his mom used to make.  No one seemed to have a recipe so he wung it and it was really good!

• We broke out Julie's sewing machine.  Months ago I bought a bunch of fabric squares and some terry cloth to make Casey new 'spitters.'  (Spitters are cloths that we use mostly when the boys are up in their chairs to catch their--you guessed it--spit.  Casey's go on on his chest, under his chin.  It saves a bunch of suctioning because his spit comes out and we can wipe his mouth).  I had planned on doing a 'Tom Sawyer' with Julia because I have no clue about sewing.  I figured that if Julia (not to be confused with Julie) came and saw us having fun, yet struggling, she'd jump in and finish the job for us.  Turns out Nurse Julie knows what she's doing and did some herself.  When Julia came she helped, too, but out of kindness, not out of 'trying to get in on the action.'  So we have 8 new spitters.  

We had plans to go to see Nobby Reed at the Westford Green with Kathy and David Day, so we had stuff to get ready.  No one was motivated to make a picnic supper but I packed some brownies.

Casey snuggled in his new hoodie

 It was pretty chilly so we dressed accordingly and brought blankets for the boys.  We headed out with the boys, and Aunt Chris.  Julie followed in her vehicle and we met David and Kathy there. 

When we first got there, we saw a woman and two pygmy goats.  The goats were adorable!!  Spent a bit of time talking with her and petting the goats.  Both the boys liked them, although one of them put his whole muzzle into Casey's mouth!  I guess I was with the lady and her goats for a while because lots of people were coming up and chatting and then leaving and one man gave one goat back to me and said, "Go back to your mommy."  Ha ha.  She gave us her card and said she'd love for us to visit her barn.  She brings her goats to nursing homes and hospitals as therapy.  She also has people visit at her barn.  For some dumb reason, I didn't take any goat pictures!

Casey had a grand time tooling around in his power chair.  We only had him on speed one, or two at times, so he could be cautious.  Sometimes he's get stuck because the ground was soft but we'd just yank on his chair and it would go.  He really thought he was hot stuff.  He was duded out in his new sweatshirt, hanging with Julie and Kathy (and me) and listening to one of his favorite bands, feelin' fine  :)  When we went around the back of the stage, Eric (drummer) and Ray (bass player) all gave a wave to Casey, which he loved.  

Me and Kathy dancing with Casey

Cool duo

This is the only pic of the band that I took and it was getting dark...

We all had a good time.  Aunt Chris got some food that she liked from a vendor that had a mini deli.  I shared my brownies.  Lots of chatting and catching up going on.

It started raining right as we were heading for the van so timing was good.

We had the boys over night so we got them ready for bed, I read some Wonder, and then we all snuggled down.  I put an extra quilt on the boys because it was pretty cool out. 

SMA Awareness Day 12-Color me pissy--SMA Candle Lighting video by B4SMA

*****MJ and Brenda posted the video they made of the SMA Candle Lighting.  The collage I made of the boys is in it.  Thank you, girls!!

It was an okay morning.  Boys slept okay.  Nurse Julie was here.  Nancy H is on vacation.

Priscilla (Colin's para-educator) came to visit for a bit.

Gene got picked up by his dad so they could get Grampa's car from the car guy and then he went to work.

It was this afternoon that all heck broke out.  And, I really don't mean it.  Everything was fine but I got grumpy.  Nurse Julie played hours and hours of wii with Colin--Destroy All Humans.  Aunt Chris came later and brought the boys the new Muppet movie, "Muppets Most Wanted" so we watched that.  Lots of ows, and demands from the boys.  Casey:  Mom move leg.  Mom eye hurts.  Ipod now.  Beatles.  Paul McCartney.  Queen.  Dog barks because he thinks its time for dinner.  Cat wants food.  Casey looses thumb to control DynaVox--takes forever to reposition.  AC moves said finger with blanket.  Colin wants to move to his back.  To his side.  Take out ear pillow.  I mean, I am grateful that they can tell me (either by DynaVox, yes/no questions, barks, etc.) what they may need but they are demanding.  And, of course, I can only try to imagine what it would be like to have to rely on others to help me move every single body part.  I grumble anyway, and then I feel guilty for grumbling.  Welcome to my world, lol.

And it's muggy.  Not crazy muggy but enough to contribute to my pissiness, and yes, that is a word in my book.

Gene is home now.  Earlier today he made kale soup with sausage, white beans, tomatoes, etc and that's what's for dinner--a little weird on a warm night but somehow it's become tradition for him to make it during the summer.  Oh, and he bought some crusty bread, yum.

.............................................

Random post from the past: 

September 21st, 2006

Scared half to death

• Sep. 21st, 2006 at 6:51 PM

Well, here’s a Colin story. Thursdays, I have no nurse. No big deal, we do fine. Colin had his school from 9-11:30. He watched a movie afterwards and then wanted to flip. I had him on Casey’s bed in the Wish Room. He was on bipap for his afternoon break. The bipap tubing was on a table near his head and his feeding tube and sat monitor were hooked up towards his feet. I can’t even explain what happened. I put him on his bed, in the same direction and was getting ready to flip him but his tubing and cords weren’t slack enough. I turned to try to pull the IV pole closer and I don’t know what happened. Somehow, I must have pulled on his feeding tube and O2 lead and I PULLED HIM OFF OF THE BED ONTO OUR VINYL FLOORING (CEMENT UNDERNEATH)!! I had my back to him fighting with the pole when I heard a sickening thud. He immediately cried and I just went and scooped him up. It was awful seeing him lying there in sprawled out with no way to right himself. AWFUL. He cried, and his heart rate went pretty high. I immediately started crying, which made him more frightened. I didn’t know what to do. I finally found one of our phone handsets and the darn thing wouldn’t dial out. I had to leave him and go into the other room to unplug and replug it in. It’s done that before. I tried calling Gene’s cell, but it went to voice mail. I tried calling his office number—same thing. I called Grandma O’Neil and it took her a minute to figure out who I was because I was bawling so bad. She told me to call 911. I called them and explained what happened and we got hooked up to our local guys. They dispatched someone. Colin was still on bipap and looked fine. Sats were 100% and heart rate only in the 130s. I don’t know how long it took 911 to come. I called Karen Reilly and she calmed me down. A cop came first, then Gene called—him mom had reached him. The EMTs came. They checked him out a bit. No blood, no marks, he was acting fine. I decided to call our primary doc. They were out to lunch!! I called the direct number and the answering machine came on! GRRR! I called Children’s Specialty Center, explained quickly, asked for our pulmonoligist’s nurse, (I know it wasn’t respiratory related, but he’s at our local hospital and I really like him and trust him). I got her on the phone in less than 30 seconds. She said we should bring him in. Gene got here from Essex Junction in record time. He must have driven way over 80 miles an hour! He was shaking when he got here but totally had everything under control, getting Colin’s things on the stretcher, etc. We got all his stuff on the stretcher (with the battery and all) and I went with Colin in the ambulance to the hospital while Gene took our van down. We got right in. The ER nurse brought him a TV right away and we found the Muppets Classic Theater which he’s never seen (note to self—look for this on DVD) and he was quite happy. Our pulmonologist, Intensivist, and the resident came right in. They checked out his arms, legs, eyes, head, etc. There was nothing obvious wrong. But, they wanted to be safe so they ordered some x-rays of his chest area and arms/wrists, and a CAT scan of his head. We did that right away, too. They saw nothing at all—no bleeds, no swelling. Of course, some bleeds could show up later, so we have to watch him to make sure he’s acting normally. So, the resident called our primary to let him know and he’ll check in with us tomorrow. Then, we were discharged. This happened right around 12:45 and we got to the hospital, had all that done, and were home by 3:35—not bad.

I feel awful. It’s always been a nightmare of mine for something like this to happen. Very scary to have to have it come true. But, I think he’ll be fine. He’s been off bipap since we came home and is acting perfectly normal. Thank God.

• Current Mood: drained

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SMA Awareness Day 11--Sorry so boring

Just another day around here.  Both boys got showers.  Colin and I rushed so we could get the dry shower chair, ha ha.  Other than that--not much happening.  Boy, I feel guilty for not making these "awareness" posts more interesting. 

..............................................

Random post from the past:  We miss Andrea!  She was a great nurse for Colin. 

Bowling and another beautiful vacation day

• Apr. 22nd, 2008 at 8:42 PM

The boys slept in a little bit.  They probably would have slept longer, but we got a little bored.  Andrea was here for Colin and Julie for Casey.  We took it a little slow and got ready when we were ready.  Casey got up in his chair early because he wanted to play computer, so he did.  I got two loads of laundry out.

We've had NO rain for 8 days!  It's getitng pretty dry here.  There isn't a statewide burning ban, but if we don't get rain soon, I think there will be.

Gene got us gas because we were on fumes.   He actually got us a whole quarter of a tank!

We probably got to the bowling alley around 11:00.  It was pretty quiet, and we like it that way!  We had lane #2 which is good.  Julie brought her own ball and shoes, how embarassing!  Actually, her shoes look more like sneakers and looked way more comfy than the hard leather things Andrea and I got.  AC met us there but didn't bowl.



Here's me and my star bowler, Casey, who won with a score of 129!  Actually, Andrea tied with him, but he really won because she worked the bumpers to get her score and Casey didn't use them!



Here's Colin and Andrea working the lanes.  He did pretty well, although he got robbed with a few of his shots.  He beat me, though!  I came in last!

We had a good time, but we only bowled one game.  We went to the arcade and did a few things there.  They don't have a whole lot that the boys like or can do.  A lot of the games are violent or dumb.  Julie and Casey played a racing game.  Andrea and I played air hockey.  We all tried some of the grabbers.  They told us that they were continuing with the rennovations and that there would be a new game room some time this summer.

Afterwards, Julie ran into Costco and got us some berry sundaes.

We were hoping the boys would want to hang outside for a while but they wanted to go in and watch a movie.  Casey watched Hairspray in his room and Colin watched Surf's Up in the living room.

Not much else.  Gene had gone up to Scott's to work on his Explorer.  He came back greasy, dirty and with a gash on his finger.

Got the boys into bed pretty early.  We finished Aliens for Breakfast.

That's about it.

SMA Awareness Day 10--Pool flop

This morning I had visions of getting all sorts of things done.  Well, it wasn't looking like it was going to happen so I quickly amended my plan and decided the only thing I really wanted to do today was to get the boys into the pool.  That took the pressure off :)

Julia was working today (PCA) so we figured we'd be able to handle the pool with the 3 of us and Aunt Chris.  We still didn't really have enough 'handlers' to put them both in at the same time.  It was COLD!  These cool nights sure don't do anything good for the pool temperature.

Casey was okay but didn't love it.  He takes a lot of careful holding/monitoring in the pool because of his trach.  I have a couple of holds that I use and switch off every once in a while.  I've learned over the years how to use my body as a support for him so I can hold his head and watch his trach and not get too tired.  It's also a struggle for Gene to get him up and over the edge but we have a little plan and we all do our part to make sure Casey is safe.

Colin went next.  I was really hoping he'd like it more than he did today.  He really can move himself in the water and it must feel soooo good to him.

I think they would have liked it better if they both were in at the same time.  They like to bat the ball back and forth and carry on and it's not quite as fun without the other :)   And, it truly felt cold to me, although I warmed up pretty quickly.  I think the boys have a harder time warming up because they are thin, and because they can't move through the water like we can so the chill sets in.  But they were good sports while the other did their thing in the water.

So, it wasn't a total flop since everything went smoothly but I had been hoping they'd enjoy themselves more.



Random posts from the past-two post because one is a continuation of our night:

We saw the Rocket Man!

• Jul. 21st, 2008 at 11:53 PM

We had an awesome time tonight!  Everything went flawlessly--no formula accidents, parking was easy, seating went fine, we didn't forget anything, and there were CLEAR Skies and a breeze!  It was actually a perfect night for a show.  I didn't bring my camera because I followed the "rules."  Of course we had Gene's phone and took a couple of pictures, but they won't be so great.  I'll have to steal some off of one of the news web sites.

The boys are in bed.  We have the boys tonight so I have to go and get my stuff and hunker down in the wish room.  I'll update more tomorrow.  I'll just say that we heard some of our favorite-est songs:  Good-bye Yellow Brick Road, Rocket Man, Tiny Dancer, Saturday Night, Sacrifice and Crocodile Rock.



Here's the news story from WCAX TV

Elton John Concert Rocks Vermont 

Essex Junction, Vermont - July 21, 2008
One of the most anticipated shows in Vermont history rocked the state on Monday night; Elton John performed to a sellout crowd at the fairgrounds in Essex Junction.
The Rocket Man sent more than 10,000 fans into orbit with his first-ever show in Vermont. But before he hit the state, the flamboyant performer met with reporters and tasted the limited edition Ben and Jerry's ice cream flavor made in his honor, aptly named "Goodbye Yellow Brickle Road."
Sir Elton was glad that the rain stopped and let him play his first Vermont show in full force. "I love America," he said. "I came here in 1970 for my first show in California, and it's taken me, well, 39 years to get to Vermont, but it's worth it and I love this country, and I wanted to play in every single state"
Fans who waited months, if not a lifetime for the show, were not disappointed.
"We were really excited," said Geoff Gadbois of Milton. "He may never come back again, so it was great."
Kate and Jimbo Petraska traveled from Hanover, NH, to see the show. "We just got married last week, so this was really special for us," Kate Petraska said. Elton John even played the couple's favorite song, 'Tiny Dancer.'
Sir Elton John played for over two hours, and certainly gave 10,000 people a rocking Vermont night that they won't forget any time soon.
Jack Thurston - WCAX News

• Current Mood:elated
• Current Music:ANYthing by Elton John

more on our Elton John concert

• Jul. 22nd, 2008 at 8:55 PM

We packed up and headed out by a little after 6:00.  We made it down to the fair grounds and sailed right through the gate.  I imagined that we would have been waiting on a line.  We were sent to a great handicapped spot so no one would park next to us on our lift side.

We headed into the grounds and walked around for a bit.  Nancy R and her mom found us pretty much right away.  It was kind of hot so we stood with them in a shady spot and chatted for a while.  Saw Heather F and Gene saw some friends, too.  Gene and AC and Colin went in search of some food.  They came back with some Al's french fries that were really good.  I just HAD to get a fried dough, too!  Nancy bought a program for $20 which we showed to Casey.  He was kind of weepy.  He said his 'privates' hurt.  I guess they were manipulated quite a bit and I imagine they would hurt!  He wanted to be shifted in his chair quite a bit.  We didn't have his DynaVox with us since it would have been a little crazy with all the people and I didn't want to get it damaged or possibly rained on.  I know he wished he had it because he was kind of frustrated.

Gene had one little incident when they were out scoping out food.  I guess some excited woman was jumping up and down and yelling to a friend and somehow she ran into Colin's chair.  Gene was pissed!  She made it seem like it was his fault and kept saying, "Ouch, that hurt, ouch, that hurt!"  Gene was furious and called her a bad name.

We headed up to our seats.  The handicapped seats were already getting filled up.  We had seat numbers on our tickets but they didn't adhere to them.  We got good seats about middle way down.  Some people ended up being behind us, but I still think they were able to see fine.  What kind of freaked me out was that there was no covering over our seats.  Gene asked the usher and she said they were busy painting everything and that it would be back in time for the fair--geesh, I was counting on having it overhead for rain and/or sun purposes!  Luckily, there was a nice breeze and it had cooled right down by the time we got up to our seats.

We had a while to wait so we people watched.  Lots of people came up to us:  Tom G, Terry, Paul, our RT, and Kathy and her friend.  Kathy cheered Casey up because he was grumpy at first.  She got him to feel better.  She promised him that she'd be back for the Crocodile Rock and dance for him!

It finally started, and it started with a bang!  The boys were fascinated!  Elton John played and played.  He talked a little bit, but mostly he played and sang and played and sang.  The audience was respectful and excited and very into it!  He dedicated Good-bye Yellow Brick Road to everyone at Ben & Jerry's.  He seemed honestly to be very pleased with his reception in Vermont and his experience, albeit short, in Vermont.

I held Colin for a bit but then he complained about something hurting so he spent most of the show in his Kart, but he loved every second of it!  His eyes were huge and he was totally focused and into it.  Casey had his moments when he was fussing but overall he loved it!  He was very excited to hear Saturday Night's Alright and Crocodile Rock and Rocket Man! 



Set list:

Funeral For A Friend

Love Lies Bleeding

The B*tch Is Back

Madman Across The Water

Tiny Dancer

Levon

Believe

Take Me To The Pilot

Goodbye Yellow Brick Road

Daniel

Rocket Man

Honky Cat

Sacrifice

Don't Let The Sun Go Down On Me

I Guess That's Why They Call It The Blues

Sorry Seems To Be The Hardest Word

Candle In The Wind

Bennie And The Jets

Sad Songs

Philadelphia Freedom

I'm Still Standing

Crocodile Rock

Saturday Night's Alright (For Fighting)
Encore

Pinball Wizard

Your Song

I didn't even feel Gene getting antsy about leaving, which is a good thing!  Usually he starts worrying about getting out safely and quickly so we don't get trapped in traffic.  But, once the encore came, we both felt the need to hightail it out to beat the crowd.  It's a little different when the fair is going on since people stay after the shows and don't all depart at one time...But, this is the biggest concert EVER in Vermont with over 10,000 people attending.



So while Pinball Wizzard was going on, we headed out.  Of course other people were heading out, too, but we didn't have much of a problem once we got out of the immediate area and into the lighted areas.  We heard Your Song while we were walking and loading into the van.   We got right into an exit line and whoosh, we were out and on our way home.  We called Grandma O to see if they heard the show, but they didn't hear anything.  Maybe the wind was blowing the other way!

We made it home by about 11:20 PM.  Gene and made a pretty smooth transition to bed/pjs/etc.  Colin was out in minutes.  Casey stayed awake until at least midnight!

I got my stuff and read for a while and then slept in fits and starts.  Colin only wanted to flip twice, and Casey wanted to flip 3 times.  I had some crazy dreams and I kept waking up--must have been the fried dough!

Tags:

• champlain valley exposition,
• concert,
• elton john