Tuesday, August 26, 2014

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.

Saturday, August 23, 2014

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. 

Thursday, August 21, 2014

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!

Tuesday, August 19, 2014

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.

Monday, August 18, 2014

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 :)