Annual Nurse/Caregiver Cookie Exchange Party

We all enjoyed our annual cookie exchange party today--it was definitely fun and a success!  Everyone came that RSVP'd so there were eleven of us plus the boys so we definitely had a full house.

Everyone brought a gift for the Milton Family Community Center.  See...!  Gene will bring them over sometime this week.  I'm sure many kids will have smiles on their faces this Christmas morning unwrapping some of these cool gifts!

We had some good munchies:  Christmas Punch (cranberry juice, lemonade andginger ale), crackers, cheese and pepperoni, spanakopita, and Red Velvet cupcakes with cream cheese frosting and red and green sugar.

Of course we also had M&Ms to eat as well as use as Bingo markers in our Christmas Bingo games.  Andrea won the TWO games of Bingo! 

Then we did our cookie exchange.  There's always a little bit of confusion but we all end up with beautiful containers of cookies.  Meghan made SnickerDoodles with Rolos in the middle.  Nancy L make log cookies with chocolate and almonds.  Nancy H made her festive spritz cookies.  Aunt Chris made some sugar cookies with sprinkles, but didn't make quite enough so she picked up some ginger bread men from Madeline's to make up the difference :)   Julia made SnickerDoodles.  Julia C made star sugar cookies that were decorated beautifully.  Andrea made the all time favorite peanut butter cookies with the Hershey's kiss.  I made all-spice thumb print cookies with raspberry in the center.  Lauren made Andes Mint Chocolate chip cookies.  Julie made white chocolate macadamia nut cookies.   Staci made peanut butter cup truffles. 

Punch, cheese, crackers and pepperoni, cupcakes and pineapple chunks

Special treat table

Colin with eyes squeezed shut and Nurse Julie

Santa Casey

Indulging in some yummy food.

We still had time to play the memory tray game.  I tried to change it up a little bit and everyone got mad at me.  After I had them stare at the items on the tray (there were about 16) I tried to have everyone sing a round of Jingle Bells in an attempt to distract them a bit and make it harder to remember, but most everyone bailed and started writing anyway!  Next year I won't give them their pencils and paper until I'm totally ready for them to start, so pffft on them!

Guess who won the tray game??  Yes, Julia O'Neill.  She's won every year that we've done this game.   Nine was the average items that were remembered with 6 being the lowest.  I won't rat out that person publically :).  Julia won by remembering 12 items!

A few people had to leave while some of us stayed and chatted.

Meghan, our 'old' night nurse stayed awhile and spent some quality time with the boys and I know they appreciated that. 

It was good to have everyone together, although we were minus a few.  It's pretty unusual for us to be able to sit and enjoy each others company; we have a good group of people that take care of the boys!

All the while, though, I had Connie and Justin on my mind.  Daniel, too, of course, although I know he's in a safe, happy place.  It's just very hard to go on with life and do enjoyable things when people you care about very much are hurting so badly.

Daniel's Service

What to say about a 6-year-olds memorial service?  I'm glad Chris and I went.  I'm glad Connie and Justin and family had a lot of support.   There were two books read that were very fitting and touching.  Daniel's cousin, Heather, had prepared a beautiful tribute to him and read it so well.  I'm amazed at how composed she was.  Justin tried to play the memorial video that MJ created but the wifi was in and out so only part of it was shown.

The room looked 'nice'.  I don't know how to describe it but I'll put some pictures below.  I haven't asked Connie and Justin if it's okay to post but I think they'll be okay with it.  Connie was fine with me taking pictures after we set up.  Chris and I had arrived at the funeral home early so we were able to greet Connie and Justin and help them put some of Daniel's favorite things around the room.  There were stuffed animals, Daniel's doctor costume, a kite that his grandpa gave him, lots of pictures, and a couple of photo albums, books, toy cars, hats and sunglasses.  Daniels urn was up on the altar with some photos of him and beautiful flower arrangements and some blue balloons.

Lots of tears were shed and there were a few chuckles, too.

Afterwards, there was a gathering at Connie and Justin's house so we headed over there.   Lots of chatting and food and just being supportive by being there.  I know Connie and Justin were exhausted but they hung in there--I'm sure they collapsed when most of the people had gone.

So Aunt Chris and I did okay.  Thank goodness for the GPS!  It was perfect.  Springfield is a very odd town.  It was big into industry back in the day but now there are many HUGE factories just crumbling.  The streets are winding and twisty and there are lots of hills.

We made it home by 6:17.  We were supposed to be home by 6:00 according to the GPS's first calculations, but there was lots of fog so Chris drove under the speed limit.

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

While were were gone, the boys had a good day.   Casey had a shower.  Nancy H and Gene got the boys dressed and loaded up in their chairs and they were off to the Christmas Spectacular at the Essex Alliance Church.  Casey, especially, was very excited that there was a production this year.  Last year they took a year off.  Thank you to PJ, who always makes sure we get tickets and meets us there and hangs out with the boys.  I know the boys enjoyed themselves very much and they behaved themselves, too.  Casey got a little loud when the pastor was doing some talking but Casey just wanted more action  :)

After they came home, Nancy played some Poptropica with Colin while Casey flipped some channels.  Aunt Julia read some Christmas books with him, too.  Thank you, Julia for coming and fairy-izing.  I'd still be behind if you hadn't helped.

Tomorrow will be a tough day.  Chris and I are driving down to Springfield to attend Daniel's memorial celebration.  I hope we can bring some comfort to Connie and Justin by being there.  I hope I can stay strong enough to bring them this comfort.

Gene and Nurse Nancy H will be going to the Christmas Spectacular with the boys.  I am a nervous wreck about leaving them.  I hope the two of them can handle the outing--it's very unusual for me not to be there or to at least be there to get them in their chairs with all their equipment and food and all that.  I'll just have to let it go and believe that they will remember everything and that Colin will have his monitor and be buckled in properly and that they'll be warm enough and have enough spit cloths :)

And, of course we're nervous about the weather.  'They' are calling for some rain or snow or possibly some sleet in the AM.  Hopefully, it won't happen at all or it will be done before we leave.  And, Aunt Chris and I aren't the best navigators so I'm nervous that we'll get lost.

So, if you can keep us in your thoughts/prayers for tomorrow, that would be appreciated!

 A celebration of life for Daniel Louis Sacripante will be Saturday December 8th at 2 PM, Davis Memorial Chapel, 99 Summer St., Springfield, VT 05156. Also, on Saturday December 15th ath Trinity Episcopal Church, 1579 Northern Blvd. Roslyn,

N.Y. Justin Sacripante and Connie Sacripante are requesting in the lieu of flowers any donations to benefit his friends, Casey and Colin O'Neill "Wheels for O'Neills" both boys have SMA Type 1,and need a larger van. Donations can be sent to www.DanielsHope.com or mailed to 5 Cooper, Springfield VT 05156. Any additional monies raised will benefit Sophia's Cure for research for SMA.

Historic Day for SMA Gene Therapy!

*****Historic day for the SMA community today:

There was  meeting at National Institutes of Health, for the Recombinant DNA Advisory Committee in Washington and SMA was the topic.  What does that mean?  I'm not quite understanding it all myself, but the best way I can describe it is that there was a presentation to the committee declaring why they should approve an FDA submission for the first human clinical trials in gene therapy.  The presentation was given by The Research Institute at Nationwide Children's Hospital and Ohio State University where ground breaking research is taking place.  This is one important step out of several to get this program moving ahead.   Several SMA families had the opportunity to speak as well and,  I understand, were quite moving.  I wish I had been able to view the live feed, but I had a Casey meeting :)  Thank you to the parents who spoke for all of us.  And, the answer was a unanimous YES!   If I see a blog that describes it better, I will add the post here.   Here are the parents and their kids that they 'brought' to the meeting!

"Call me, Daniel"

I am very thankful for Daniel being with me in spirit.  Yesterday, our buddy unexpectedly passed away from complications from Spinal Muscular Atrophy (SMA).  He was 6 years old.  I love him like he was my own child--there was nothing I wouldn't have done for him.  His parents, Connie and Justin, doted on him.  They didn't make any decision, small or large, without thinking of how it would affect Daniel first.  They are super parents.   I can't even fathom how they will get through each day without 'Dan the Man.' 

I truly do think Daniel is with me in spirit.   My heart wants to stop and grow cold with anger and grief but this little fluttering spirit is telling me, "NO"!   The fluttering is in my heart and I know it's Daniel.  He's squeezing my heart and telling it to keep beating, keep growing, keep loving.   I sense he wants me to put 110% of myself into continuing to give Casey and Colin the best life possible.  He wants me to make every second of every day count and to make sure they know how much they are loved and how special they are.  I can do that for my Daniel.

I love you Connie, Justin and Daniel!

PS.  My Title, "Call me, Daniel" is from Daniel's talent act at Camp Inspiration.  He and his counselors did their rendition of "Call me, Maybe" by Carly Rae Jepsen.

This is the last picture I took of Daniel and my guys this July.  

Playing Splashy the Whale!

The boys!

Our families at Camp Inspiration, June 2012

Back in my bed

Ahhh, it was nice to sleep in my own bed last night.  Gene is finally feeling better and he's been on Zpack for 24 hours.  I Lysoled the room and washed the sheets and comforter in hot water.  It was nice sleeping in the aunt room for a few days but glad to be back to normal.  Very relieved that myself, nor the boys got his yucky bug.  He had a super killer sore throat and had aches and some fevers and was grumpy and tired. 

Click here to help the O'Neill boys to "keep on keepin' on!"

MDA clinic and Red Sox players

What a day!  It was overall successful, it's just tiring packing the boys up, seeing lots of docs, and heading home.  That sentence sure doesn't fit how tiring it really is!

But, we made it out of here at about 8:30.  Luckily I had 2 nurses today--Julie and Nancy L.  Gene was too sick to come.

We still had to wait a bit even though we got there on time.  Sometimes it doesn't pay to rush, sigh.  Oh, and there were snow squalls and I was getting nervous, but when we hit Chimney Corners, they pretty much stopped.  It's weird how sometimes it ONLY snows in Milton.

Nurse Jackie Schwartz put us in a treatment room instead of one of the small rooms that we usually go in.  She said she cringed when she saw us packed in the room last clinic.   We had one boy in the room and one boy in the hall last time. I have no clue why they made the rooms so small. 

We saw Dr. Bingham, the neurologist first.  Talked quite a bit about Casey and his sometimes holding his pee.  No real answers, but he said maybe we can get a urinalysis done just to rule out anything.  He didn't give us an order but said that Dr. Donna can write an order if we wish to do that.  Updated him on both boys.  He's going on sabbatical for 5 months so we probably won't see him next clinic time.  Oh, and we were talking about their switches and tired fingers and he mentioned that he knows a doctor/engineer that is into how people drive wheelchairs with switches.  Well, isn't that just up our alley?  He said he'd get us in touch with him.  I think he said his name is Dr. Christiansen.  I hope he doesn't forget.  Saw Dr. Lariri (pulmonologist).  Updated him.  Nothing much different.  Talked about Casey's humidifier/heater, Colin's bipap dependence.  Then saw Dr. Benjamin, rehab doc.  He's going to write a script for Colin to get solid AFOs for standing.  I showed him the pics of Colin standing with his knees bent and he was okay with it.  Saw nutrition-not Linda LaShure.  Updated her.

Poor Casey was out of sorts.  He had 'stuff' in his trach and wanted a cough.  We were all bundled up and ready to head out to the van.  Went to the lobby of the Children's Center and there were two Red Sox players!!  They were on a goodwill tour of hospitals around New England.  Casey didn't want to see them, at first, and he and Julie started out to the van but I wasn't going to let this opportunity pass, trach secretions and all, lol!  I had to sign something allowing the hospital to take pics, etc.  Both boys were presented with a stuffed Wally.  They got their pictures taken with Ryan Lavarnway #60 and Pedro Ciriaco# 77, catcher and shortstop respectively.  They were very nice.  I think they were a little overwhelmed with Casey's DynaVox--they didn't quite know what to make of it.  I wish Casey had been feeling better because he really would have enjoyed it better.  Colin was thrilled and when we left he kept saying more, more, more.  He wanted to hang out with them some more!  And, of course, when Casey finally got his cough he felt better and wanted to go back up.  Oh well.

I only got one picture because I don't have a smartphone but one of the hospital people took this and emailed it to me.  Poor Casey was a grump!

And that was that.  Another clinic down.

Mel came for about an hour and did some DynaVox things with Casey.  Colin got out of school totally because Priscilla got called to a meeting.  Colin was quite happy to play some Sponge Bob computer game with Nancy.

Thanksgiving 2012

All-in-all it was a good day.  Everyone was tired out by the end of the evening but that's a good thing :)

Nancy H and I woke the boys around 8:30 so that we could get them a little bit awake and get Colin's vest and coughing done so that we could make it to the living room for the Macy's Thanksgiving Day Parade to start at 9:00.  We made it!

Colin enjoyed it more than Mr. Big Stuff.  Casey ended up having his ipad on some football so he could keep an eye and an ear on both.  He liked the Rockettes, Carly Rae Jepsen and Sponge Bob the best.  Colin loved most everything, and especially liked the Peanuts gang and HoHo (Santa).

Boys got dressed.  Nancy left.  Hung around.

Aunt Chris came.  Around 4:30 or so RJ and Tiffany came with Grandma andGrandpa O.  Tyler showed up fashionably late :)

Had some hor d'oeurves: cheese and crackers, onion dip and chips, and my deviled eggs.

Chatted.  Although Casey was being very unsociable.  I guess it comes with the territory of being a teenager, sigh.  He just wanted to stay in the yellow room and watch football, click channels and chat with AC on his DynaVox.

Gene and I did all the last minute stuff.  Putting in the casseroles, mashing the potatoes, etc.  Everything came out really well--I think it was one of our best tasting meals yet!

The menu:

Turkey, gravy, stuffing
cranberry sauce
cranberry nut bread
dinner rolls
green bean casserole
swiss corn bake
mashed squash
mashed potatoes

And then for desert:

pumpkin cheese cake
apple crumb pie and vanilla ice-cream
cupcakes

We all hung out some more, did some Skyping with Peggy.

RJ played some wii with the boys.

Everyone went home.

Clean up (not everything--too tired!)

Got the boys ready for bed.  Gene read them their Captain Underpants book.  Sleep.  Night nurse came.

I wasn't a very prolific or creative photographer but here are a few pics.

Photo Card

View the entire collection of cards.

30 Days of Thankfulness-Day 17-A Store

It took me a bit of thinking but then it hit me.  A store.  Easy.   Morgan's Food Mart in Essex Center, VT.  It has since burned down but in 1987 it was a hoppin' fun place.  I was kind of floundering around after college working at a Morgan's in the junction.  Morgan's was a convenience store.  I ran the register and stocked--all that kind of retail stuff.  It was a good job to have because it wasn't very hard and was close to where I was living and my co-workers were cool.  I had lots of time to hang out with friends and party. 

For some reason or another, I started working up at the Essex Center store.  They had a gas pump there and I had to learn to pump gas as well as do all the other stuff.  Anyway, there was a cute boy/young man that worked there that I thought was kind of cute.  Even though I had a boyfriend I still kind of liked the guy.  One night my stupid boyfriend didn't come to pick me up (with MY car) so the cute guy said he'd bring me home.  We ended up going to get some beer (I bought because I was legal and he wasn't--although he will argue that he was able to buy beer at a bunch of different stores albeit not legally).  We drove up to Bolton somewhere, parked and drank beer.  I even peed behind his truck. 

He eventually brought me home.  I guess I eventually broke up with the other guy and moved in with a friend of mine.  The rest is history.  Guess who the guy was?

Yes, it was Gene.  If it wasn't for that store we probably never would have met, dated, gotten engaged, married, bought our house and had Casey and Colin.  I can't imagine those things not being a part of me, so I am very thankful for Morgan's Food Mart!

humanity restored

Over the summer, a Milton woman saw my post about our Wheels for O'Neills tag sale we were holding.  She said that if we wanted, she'd donate a truck cap to us if Gene came and picked up.  Well, he picked it up.  He didn't really have it where people could see it at the yard sale so it's sat here since.  He put it on Craig's List and got a couple of hits but not one was interested enough to come and look at it until today.

The guy came, looked at it, decided he wanted it.  He only had $120 cash on him.  Gene helped him put the cap onto his truck.   The guy said he'd go to the credit union and come back.  I had my doubts.  I didn't even meet the guy but I know Gene has been screwed in the past.

Two times stand out in my mind.  Once, there was a woman who bought one of his old cars.  She wrote him a check and it was never good.  I can't remember the details but there was a lot of talk and no action.  Another time, he sold a car to a guy who he kind of knew.  Same thing--but the guy was supposed to give him cash, etc.  Nothing.  I'm still pissed.

But, today, the guy came back and quickly, too!  So, now we have $300 more for our Wheels for O'Neills van fund, whoo hoo!

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

Colin made Chocolate Peanut Butter Krispie Treats today.   The class was to find non-bake recipes and bring them in.  Then they practiced halving the recipe and doubling and tripling it, etc.  Today they actually got to make their recipes in groups.  Colin did his while in his stander.  We rolled him into the kitchen and he helped us measure and pour and then helped pat down the treats in the pan.  He kind of complained more than normal about being uncomfortable but I think he liked doing it anyway.

Seeeeee!!  They were yummy!

Colin's class watched Soul Surfer (I guess one of the core values of the school is perseverance) and Colin watched a lot of it but when it was time for him to end school (he ends early some days) he decided he had enough.  He's so funny because here he is at home looking at a TV and on the TV is a TV that he's watching the movie on.  He's never complained about that.  A movie is a movie is a movie to him and he'll watch when ever he has a chance under any circumstances, lol.  But today, the class room had echoes and it was hard to hear.  One of these days I'll rent it for both boys to watch.  It's not on Netflix yet. 

Julia and I made Creamy Asparagus Soup today.  We've had some asparagus in the fridge for a while and I knew it wouldn't be tasty if we steamed them so I found a recipe that looked pretty easy and good.   Julia did some of the prep and I did the rest.   It really turned out good.  Right before you serve you're supposed to put a pat of butter and a squirt of fresh lemon in and boy, that made it delicious to the max!

Creamy Asparagus Soup

I really wanted some crusty bread to pair with this for dinner but that didn't happen.  Why you wonder?  Well, because our animals did not cooperate.  I hadn't brought Jaxon out for a good Frisbee-play for several days and he was looking pretty anxious so Gene said to go ahead and bring him out.  I was done playing after awhile (he had a GRAND time flying through the air and snatching the Frisbee high in the air!) but Jaxon was not.  He sat down with the Frisbee under his foot and just looked at me when called him to come in.  He's been doing this lately and it is not a good thing.  Gene couldn't get him in either.   Gene was grumpy so he said he was going to the store to get some beer (long week at work for him).  That left me with caring for two needy boys and a dog that was loose outside.  It was starting to get dark so I went out the back to see if he'd come and MOXIE snuck out!    So I had two needy, medically fragile boys inside and a dumb dog outside and an INSIDE cat outside.  Nice.   I called Gene and he got his beer, but not my bread.   Sigh.  I finally got Moxie in.  It took about an hour and a half before Ding-dong decided he was hungry and then he came in.  This dog needs some training!

Boys are in bed.  Dada is reading a Captain Underpants book.  ---to the boys, that is.   I'm heading up.  Boys have off all week.  No Nancy  tomorrow; just us. 

30 Days of Thankfulness-Day 15-A Recipe

This one's easy. This is a dish that we have every Thanksgiving and every Christmas, and usually on Easter, too.  Why don't we have it other times???  Tradition, I guess. 

Swiss Corn Bake.  The name of it might turn you off but it is really good.  I think Mom got it originally from someone at Montessori way back in the 70s.  Maybe it was a teacher or a parent, or one of the fundraiser cookbooks?  I don't quite remember but I do remember that everyone loves it when they try it. 

Actually, just recently, my nephew RJ was here for dinner one night when his mom (Peggy) was visiting from out of state.  He seemed happy with everything and was happily eating away and out of no where he says, "Wait, where is that corn casserole??"  We all laughed and I told him he'd have to wait for Thanksgiving...I guess you had to be there, lol.

I will also have to admit here that I'm not the one that makes this dish.  I'm perfectly capable of making it, and I have before, but it's tradition for my sister, Chris, (AC) to make it for our holiday gatherings.  Maybe that's why we only have it 2 or 3 times a year---because Chris hardly EVER cooks! 

Here it is:

1 16 ounce can corn, drained
1 5 1/2 oz can evaporated milk
1 cup shredded swiss (about 4 ounces)
2 beaten eggs
2 TBS. chopped onion
1 cup bread crumbs
2 TBS melted butter

Combine corn, milk, 3/4 of the cheese, eggs, onion and pepper (black pepper, to taste)

Put into casserole dish

Toss bread crumbs with butter and remaining cheese and put on top of corn mixture

Bake at 350 degrees for about 1/2 hour with lid or foil.  Remove lid and bake for about 10 more minutes until brown and bubbly.

Enjoy.

Boys go to the dentist and Sue goes to a meeting

Tired but got two things done today.  The boys went to the dentist and I had a Colin team meeting. Luckily, Julia was able to come today and fairy-ize.

We got the boys ready as usual.  Mel came and tutored Casey for an hour and Colin did advisory and then his theater class.

Casey read some Marcello and Colin watched A Christmas Carol for the 100th time.

Gene was able to come with us to the dentist appointments.  I HATE driving in Burlington and I especially hate driving the van there so I'm glad he was able to get away for a while.  For some reason, Dr. Bookwalter likes to see us at the Burlington office instead of So. Burlington.  He thinks the offices are bigger but I beg to differ.

Anyway, we actually made it on time and we hardly had to wait a minute until we were called back.  Casey went first.  Dr. B is always fascinated with Casey's DynaVox.  Casey didn't have much to say but that was because he was tipped back so far that his hand was slipping off of his switch.  Not much new with Casey.  He still thinks that he has good, strong teeth and gums.  He says he has very little chance at developing any cavities.  He only scraped a tiny bit of dried saliva off the back of his front teeth; everything else was clean as a whistle, well, except for the staining on his front teeth.   Dr. B polished them a bit but the stain is mostly inherent in his teeth because of the air drying the spit on his teeth all these years.  Casey and Nancy headed over to the Dollar Store.

Colin went in next.  He said, "Ahhh" right away.  Colin still has about 4 teeth left to lose.  He said he's actually on target for his age.  There was one loose tooth on the top that we had been watching and Dr. B said that it was ready to go and that he'd pull it.  So, he asked his nurse for a spoon--I know it's a dental tool, but it freaked me out anyway.  I held Colin's hand and looked the other way.   Splooooch--out it came!  There was a little blood but no more than we expected.  Colin kept saying it hurt and he wanted Tylenol, which is SO not like him but I don't think it hurt that badly.  He also got a good report.

Both boys are set for a year unless we have any issues or if we need him to pull out another tooth.  I secretly think Gene likes to do it himself, so we'll see.

Gene, Colin and I headed to the Dollar Store.  We were in there for several minutes and I didn't hear Casey at all!  If you know Casey, that's a GOOD thing.  Finally, I heard his vent before I heard his voice.  He is really learning to control his voice when he's in public.  Well, except for the movies...but we're getting there.

Casey picked out two books.  One was the Chicken Soup book for the American Idol and one was on the Rose Bowl, or was it the Peach Bowl???   Colin said no to everything until we came to the gross, plastic, redneck buck teeth and then he insisted on those.  He even passed over the wrestling mania belt!

Headed home.  Casey went into the living room to click some channels.  Colin settled into his spot to watch some TV.

I has some lunch and then it was time to head to the meeting.  When I got there, I realized I didn't know where Emily's office was so I wandered a bit and then found Claire (OT) so we found everyone together.  It was supposed to be an eval planning meeting but we started off with some general stuff.  And, drum roll....Emily said she had talked to Tim (special ed coordinator) and it looks like the funding is there for the VGo!!!!!!!   So now Emily will talk with the rep and see if we can get a real trial.  Last year we saw the VGo in action from our house while the VGo was in the warehouse.  But this trial will be cooler, of course.  Also talked about putting all of Colin's work on the wiki like we have Casey's.  Talked about using Google Drive so the kids and Colin could share work and comment on each others work.  Lots of other good ideas were shared as well.

Julie was here for Wii Wednesday.  Colin picked out the Redneck wii game going along with his tooth being pulled and picking out the ugly plastic teeth.  He is so funny but serious about it at the same time.  Casey picked one of the Sponge Bob games and neither objected to the others picks.

Oh, Paul (RT) was here earlier and dropped off the extra heater for Casey.  I think, at this point, I'll send it in to school after Thanksgiving break since they'll be off the WHOLE week.  It would be silly to send in the humidifier, water, tubing, etc. for only two days but after that we'll see if it helps keep him from getting too dried out being on the HME for the day.  At least he'll have about 45 minutes on the heater to get some warm, moisture in his trach.

Here's Colin with his tooth.

30 Days of Thankfulness-Day 13-Something Old

Technically, a person is a thing, right???  I've wanted to show my thankfulness for my parents and I didn't want to wait until Day 30, so I'm plugging them into "Something Old."  Well, they are old, and I'm sure they'd admit it.  They are both 86-years-old.   Actually, Mom will be 87 on December 14th, and Dad will be 87 on December 20th.

I'll start off by thanking them for giving me many experiences and other things that I am thankful for.

I'll start a list:

Montessori School:  Thank you for sending me to Montessori school for my formative years.  I made a good friend there and I learned organization and neatness and I'm a REALLY good pour-er!  I always offer to pour things when the situation comes up and I always thank Montessori school for teaching me, lol.

Our dog, Commandant (AKA Comma): (although I think my brother gave our dog to Mom for Mother's Day one year when I was about 5 or 6), but she was my companion for years.

Our boat, The Wild Goose:  So many memories of sailing around the sound, having hamburgers cooked over the stern on a grill, Mom's beef stew that we'd have the second night after it thawed out.  And, my dinghy, the Suzy C.  I loved rowing and I know if I was plopped down in a row boat right now it would all come right back to me.

The cabin in Maine:  I wish it was still there exactly like it was 30 some odd years ago and we could time warp back there.  The blueberry picking, the lobster pound, Ellsworth, sailing, the smell of the pine trees, the ping pong table, the well (I would love to haul up some water from it right now!), bringing Laura and Mary with us...I could go on and on.

St. Thomas:  How many kids get to live there for a month or two and swim and snorkel and enjoy the island?

England and Ireland:  Again, how many kids get to take off from school and go touring around England and Ireland and experience castles and the moors and live in a thatched cottage?

Disney World:  Thanks for being such good sports and going around the parks with us at Disney World for Casey's Make a Wish Trip. 

My Audi Fox:  Almost forgot.  My first car.  Thanks for my very special first car and getting it repainted for me in fire engine red.

The Barton House:  I never actually lived there but I loved that place and I know you would have gotten me a horse if I had decided to live in the boonies.

Hiking with Dad:  I wish we had a chance to do more Vermont mountains but I'm thankful for the ones we did.  I wish I could remember the names, but I know you do :)

Love of reading:   Everyone in our family loves to read.  Mom, Dad, Chris, me, and even Bobby was known to love to read.  It's one of my greatest pleasures.  I wish, wish, wish, I had kept of the log of all the books I have read over the years.  I have no clue as to how many I'd be up to now but I know it would be thousands. 

St. Michael's College:  Those four years at St. Mike's shaped a lot of who I've become.  I'm sure they wish that I had 'used' the skills that I learned there in a career, and I do, too, but I know they know how happy I am to be home with my boys and care for them.  If the boys hadn't had SMA, it would have been different and I KNOW I would have become a writer/editor/photographer/researcher or something along those lines. 

Slides:  I am very thankful that my dad was a shutter bug and took thousands of slide of us growing up.  One of these days I really am going to scan them and put them on a USB hub so that we can view them on the computer.

Our wedding:  Gene and I had a beautiful wedding--just how we wanted it, and we are very grateful for it all.

I'm also thankful that they put up with my teenage behaviors and that we all survived my teenage years.  I really did turn out okay but I'm sure they both had their doubts over those years.  Maria still can't believe that Dad would pick me up at 4:00 in the morning after I'd been out partying all night.  I guess it means that he loves me :) 

Of course there are many more experiences to list but I'm not ready to write my book--not quite.  

30 Days of Thankfulness-Day 12- A Gadget

This will be short.  I'll truly stick to a gadget being a gadget and say I'm thankful for my egg slicer.  Yes, my egg slicer.  The other day I made some hard boiled eggs (actually, it was the day that Sandy was to come through and I thought hard boiled eggs would be a good, easy food to eat if we lost power).  The next day I decided to go ahead and make egg salad which is not something I do very often.  I like other people's egg salad better than mine.  I especially like the egg salad sandwiches that are served at the church bazaars--but I digress.  I took out the egg slicer and sliced egg.  Then I got a revelation--what if I held the egg together and turned it so it would slice in the other direction.  Wow, it was a beautifully sliced/cut up egg which was perfect for making egg salad!  I added in some mayo, salt and pepper and cut up some bread and butter pickles (I didn't have any relish).   Yum. 

It turned out to be an okay day despite it starting off with me knocking a 9 X 13 Pyrex from the dish drainer onto our floor.  Boy those things can shatter!  So far no animal has come up with a bloody paw so I hope I got all the fragments.

BEAUTIFUL day today.  Broke a record today: Burlington: 69° (old record, 66°) and that was at 1:00, so we may hear of a higher temp later.

Colin started off school a little rough today.  He eventually lost his whole morning break.  Priscilla ate her lunch really quickly and they got back to work.  In the meantime, Claire(OT) had come to make a new switch/hand splint to replace the one that cracked.  So he was very busy for the rest of his day as he had lots of school work to do as well as trying on the split after each modification.

We had to get outside for a bit so we (Julia C was here for the day) got him in his chair and out the door into the warm sunshine.  It was very breezy but it felt more like a spring breeze than a fall breeze.  I had Jaxon out with his harness and he behaved pretty well.  Julia O and I had gloves on and a garbage bag and we picked up trash along the road while we walked down to the pond.  People are complete pigs!  The things they throw out of their cars is unbelievable and just plain old gross.  

By the time we got to the pond, Casey's bus was coming down the road so we headed back home.  Casey was in a super silly mood.  We stayed outside for a while enjoying the weather and watching Casey drive his power chair.  The first thing he did was tilt himself straight up (he had been tilted back for the bus ride) and put his chair in speed 4 and took off!  He did pretty well, but he did go on the neighbors lawn which is a no-no.  I was happy to see him driving, though, because he has not done a lot of independent driving at school.  He asks Mel very nicely with his DynaVox if she'll drive so at least he's using his manners, lol.

 Other than that, not much else happened today.  I wanted to go to the credit union and the post office but realized that it was a holiday...ooopsy.  

Oh, Julia was here for the afternoon so we gave her the gifts we got her.  Casey's gifts were the biggest hit.  He shopped for them himself on a school outing and used his own money and his own ideas.  He picked out a pair of purple gloves blinged out skulls on them and a giant Kit Kat bar.  Gene picked her up a gift certificate to Dunkin' Donuts and I got her a necklace from one of the holiday bazaars.  A crafter in Winooski made necklaces out of Scrabble tiles.  I looked through all of the woman's trays for a pug picture but alas, she must have sold it.  So, I found one with a skull and crossbones which she seemed to really like.  

I think it's time for bed.  We have a crabby Casey on our hands.  I think he wore himself out being good at school today!


PS.  The high for today was 70!  So we broke the record of 66 by 4 degrees!

30 Days of Thankfulness-Day 11--A tradition

We have many traditions in our family--nothing grandiose or really unique but there are several in my head that I'd like to share but I will only write about one.  I love when we go to our 'point' (an area of our property that is part of a triangle of land we own) and watch, Rolling Thunder ride in with Gene waving the American flag and the boys watching and waiting for the bikers to wave and honk at them, I love taking first day of school pictures, I love how we use a candle snuffer with the boys to put out birthday candles, I love how Aunt Chris makes Swiss Corn Bake, and cranberry nut bread for Thanksgiving and Christmas dinner. 

The tradition I'll write about is coming up next week.  It takes place on Thanksgiving Day.  We'll let the boys sleep in a little bit but then wake them and bring them out to the living room by 9:00 so that we can watch the Macy's Thanksgiving Day Parade in our pajamas.  Gene and I will start the turkey and fuss around in the kitchen but the best part is when we just stop and watch the floats, the balloons, performers and the spectators.  Casey loves all the music acts and Colin is always excited to see Ho Ho at the end.  Then we'll watch some of the National Dog Show.  Simple but special.

30 Days of Thankfulness-Day 10--A time of day

30 Days of Thankfulness-Day 10--A time of day

This is a tough one for me. I guess I'd say I'm thankful for the time of day when we're all home and we're all in the living room and everyone is happy. Which usually means that Casey is watching football on the ipad, Colin is watching Celebrity Ghost Stories or Adventure Time on the big TV, Gene is on his computer and I'm on Facebook. Everyone is

content and no one is complaining (this mostly means that Casey is not yelling/vocalizing and Colin is not saying "No Mama, No Mama" which means he doesn't like the show). Jaxon has probably had his supper and isn't up our butts worrying that we're going to forget to feed him. The cats are probably still sleeping in one of their spots and haven't come out yet to torment Jaxon. Formula is made for the day and the boys beds and room is ready for the night. So yes, for this time of day I am very thankful.

Holiday Bazaars...we went, we conquered and we're pooped!

How is it that we were only out for 3 hours and we come home and we are totally pooped and my house is trashed?  I love going out with the boys but it is a lot of work and it is stressful.  Stressful because we worry that they will be safe, that we have all the equipment that we need, that we have their food, that Casey will not 'yell', that Colin will hate it and just keep saying, "out, out, out."  We worry about pushing the boys through the crowds.  We worry about germs.  We worry about steps and elevators.  We worry about people staring at the boys...the list goes on.  Why do we still go out?  Because we want to do normal things with the boys.  We want to do normal things ourselves.  We want people to see the boys and learn not to be afraid or freaked out by their equipment and wheelchairs.  We just want to be a family.

And, going to the holiday bazaars is a tradition.  It's changed some over years.  Some churches don't hold them anymore, some have changed locations.   But we always hit at least 3.  This year we brought the boys into two and Nancy H and I went into the 3rd one ourselves.  It really is not an easy feat getting the boys in and out of the van and doing it 6 times was enough this year.  They didn't mind hanging in the van with Dad at the last one.  I think they enjoy seeing the crafts and the people but I'm sure they (especially Colin) worry about people bumping into them and us having to push them through the crowd without their being able to protect themselves from flailing arms and distracted shoppers is probably leaves them feeling anxious.  

So we left at about 10:30 or so.  Hit St. James first.  Saw Alaina and Jennifer (Alaina's Mosaics) and chatted with them.  Saw Heather and Connor and a few other friends.  One woman was giving out a little stocking with candy to the kids that came through.  When she knew that the boys couldn't have candy, she gave us the little angel ornaments that we were looking at for Aunt Chris.  So, Casey didn't have to spend any money to get his gift for AC, lol.  They had some beautiful raffle baskets and I had fun deciding which baskets to go for.  I hope I get a phone call from them later!  Last year I won a dog themed basked which was exciting.

Then we headed over Grandma O's and picked her up.  I convinced her that she should go to at least one with us.  Headed over to the Rec Department where Holy Family now holds their bazaars since the parish hall burned down.  What are the chances that we'd find a Scooby Doo book and two whale books that we don't already have????  The boys were happy with that.  Colin picked out something for AC for Christmas which I won't describe since she will probably be reading this.  Bought some yummy looking bar cookies and some trail mix.  Put in for some raffles there, too.  Then we dropped Grandma off at home.  One was enough for her :)

Headed to the Congregational Church.  The parking lot was PACKED and the boys were pretty much done so Gene stayed in the van with the boys while Nancy and I went in.   I'll tell ya.  All of the places we went had very nice people but this church really has the nicest.  Everyone was so courteous and happy and gracious and they had a lot of people showing you where things were, etc.  It's an old building with lots of different rooms and levels so things are kind of spread out.  I remember last year the boys went in and we had to use a little elevator.  Anyway, we found some more yummy treats.  I found something for Julia for her birthday.  I bought a Christmas book by a Vermont author...hmm, I think there were a couple of more things.

Headed home after that.

Casey stayed in his chair and watched some college football for bit and Colin got in his spot in the living room.

We're all snuggled in here now, including Jaxon who is half on my lap.  Gene has the wood stove on.  I'm waiting for a call from one of the churches to let me know that I won something!  We'll see!

30 Days of Thankfulness-Day 9--A blog

I will be self-indulgent here and say that I am thankful for my blog :)  I'm thankful for it for many reasons, all of them being important to me.

One reason is that having our life down in words and pictures will help me remember our good times and not so good times.  All of these make up the life of our family and I like that I can scroll through old blog posts and reminisce about this birthday or a certain Christmas or a day that was especially great at school for Casey.  And, I can remember the days that aren't so good, the days that the boys have been sick or had infusion therapy, or when we found out Colin had a broken leg--I can look back and see that we made it through those days and will make it through more not so great days.

I also like to know that there are people out there that check in on our family.  Friends, family, acquaintances, teachers--the list goes one.  There's also the people that have come to know us through the SMA world.  And, people that have stumbled upon this blog in some obscure way.  It's kind of cool and comforting to know that people are interested in knowing how we're doing and take the time to read our blog. 

I also like to think that there are some SMA families that read our blog and find some encouragement and hope.  Somewhere along our journey we have found our own normal.   Having two boys with SMA, as you can imagine, can be challenging but we try to keep a pretty good balance between sheltering them and getting out in the real world.  I hope that other SMA families can see that you can have a life and experience things even with all the medical and physical challenges we have.  I do NOT want people to feel sorry for us.  I want them to see that we have two amazing boys and that we love our lives and are very happy.

Dad and Colin playing kick ball.

Casey just starting to go on the zip line!

30 Days of Thankfulness-Day 8-A Restaurant

30 Days of Thankfulness - November 8- A Restaurant

The restaurant that I am thankful for is no longer in business. I remember, vividly when Maria Zimmerman told me that it had closed. I always imagined it being there bringing a homey atmosphere and great food to many. Maria would kick me if she were here when I say that I can't remember which part of town it was in. Was it Southdown??

The

restaurant that I'm talking about is Nina's. It was a cozy family owned/operated restaurant that had awesome Italian food. I swear that we went there about once a week when I was growing up. The owners were always there, seating people, serving and chatting. Dad (Robert Canosa) would always get Chicken Cacciatore. He loved using his knife and fork and digging into it and finding the yummy meat amongst the bones. Mom would always get Veal Piccata. She still usually gets Veal Piccata when it's available and I'm sure she remembers Nina's as being one of her favorites. I would always order Stuffed Shells. There has never been another restaurant that serves stuffed shells that are as good as the ones I remember Nina's being! I think that the salad was pretty basic; iceberg lettuce and a cucumber slice or two, BUT, Dad would actually eat it because they had an excellent (to him, anyway) blue cheese dressing. He still will only eat salad if it has blue cheese dressing on it and I can always tell by his face that he's only doing it for the dressing and that he is only tolerating some lettuce being attached to it, lol! I liked the Thousand Island dressing back then--calories be damned!

And then there was dessert!!! 90% of the time we had Cannolis. Once again, I've never found a cannoli that could rival Nina's, or is it all in my memories that I've put these foods on a pedestal??

Now here is something that I'm loathe to admit. We're talking about the 70s here. I graduated high school in 1981 so I was a teenager in the 70s. I'm not sure exactly when it started but I felt that it wasn't cool to be seen with my parents in public. I know things have changed since then and parents and their kids have very different relationships these days. But anyway, back to my story. Mom and Dad would go out to Nina's but I decided that no matter how much I liked it, I didn't want to go with them. It probably also had something to do with talking on the phone with friends--no cell phones back then! So, Mom and Dad would go without me and what would they do??? They'd bring me my favorite meal back home as take out. Okay, okay, I can see you all throwing things at me, but that's the way it was. I've told you all before that I like myself a whole lot better now that I'm a grown up and have kids. I was not the most responsible, empathetic teenager.

So, here's to Nina's that used to be 'somewhere' in Huntington, NY back in the good old days.

30 Days of Thankfulness-Day 7-A scent

30 Days of Thankfulness: Day 7: A scent

I love the scent of my boys. I can tell whose tee shirt is whose just by taking a sniff :) I love the smell of horses, and the smell of a horse barn. I love the smell of puppies. But, the smell

that I am most thankful for is that of lemon. I love all citrus fruits but I absolutely LOVE the smell of lemons!! The smell perks me up and makes me smile. Aunt Chris Canosa drinks a lot of iced tea. She tends to leave her cups here after she is finished :) I love dumping the cups out in the sink and leaving the lemons in the sink. Whenever hot water is run....ah, the smell of lemons lofts through the air! I keep those lemons in there until they get gross, or she brings another cup of iced tea! I'm too practical and cheap to buy lemons just to make my sink smell good so I always look forward to iced tea season. I love a slice of lemon in my water or club soda. It makes my heart happy and my stomach feel loved. Sometimes I resort to the True Lemon packets that Gene will buy sometimes. The True Lemon tastes okay but not as good as the real thing but sometimes I just need a little pick-me-up so I'll use some in my water or club soda and pretend it's the real thing.

Today, I have no lemon so you here's my packet of True Lemon and my ice water :)

30 Days of Thankfulness-November 6- a pair of shoes

I'm not one of those women who have a thing for shoes. As a matter of fact, Gene probably has more shoes than I do! But I am thankful for my first pair of Crocs. I may get the story wrong, but this is how I remember it. I became friends with a fellow SMA mom. She was new to the SMA world and we became friend through an SMA chat list. We got the chance to meet in August of 2005 in Virginia Beach when there was a gathering of SMA families. Anyway, we became good friends and chatted on the phone regularly. One day she mentioned these Crocs that she had that she loved. She was surprised that I hadn't heard of them yet. She told me how comfy they were and they were so nice to slip on, etc. She asked me for my foot size. And, then, Voila', one day a box arrived and I had my first pair of Crocs! Since then I've had several pairs. I've even had some 'fake' pairs. I've liked them all, but, somehow, I'm partial to my very first pair from Kim Ruisch Sykora :) Thank you, Kim!

Another round of Pamidronate Infusions

2 down (the ones we did several years ago don't count :( ) and 6 to go.  After the 2 year mark we will re-evaluate.  FYI, Pamidronate is in the bisphosphonate family and is used as prevention and treatment of osteoporosis.  It's in the same family as Boniva that is touted on daytime TV by Sally Fields.

We were all pooped out by the time we got back home but things went pretty smoothly, it's just a lot of stress and I'm sure it's not a picnic for the boys to have an IV in with medicine going in...

Colin was the first to have the IV nurse work on him.  It took some hot packs and a lot of looking, looking, looking before she found a tiny vein.  She got it on the first try and was able to draw what they need to check before the infusions are given, as well as the Quantitative Amino Acid profile that we needed for nutrition.  We were very careful with his arm and hoped that the vein would last through the treatment, and it did! The IVs nurses name was Sue/Susan and had a lot of experience--will remember her for next time.  She was successful getting Colin's in on the top of his left hand. 

Colin half-hardheartedly would "ow, ow" and want me to put the hot pack over his IV but really he did great.  He picked National Treasure to watch and was transfixed the whole time.  He wants Aunt Chris to buy him the sequel.  He watched part of one of the Pirates of the Caribbean movies but we were out of there before it was over.

The IV nurse had a time finding a vein on Casey, too.  She ended up getting it in his left wrist.  Julie said that's where he had it last time.  His lasted the entire infusion as well.

Casey watched Drumline and some sports and was pretty quiet the whole time.  Julie got him out of his chair and all comfy on the hospital bed.  

Dr Zimacas (endo) came in and went over a few things.  He'll skip seeing us next infusion and see us at the one after that.

Dr. Lahiri (pulmonary) came in and I asked him to up Colin's settings on his vents/bipaps.  He was fine with it.  Colin's daytime settings went from 19/4 to 21/5.  His AVAPs, nighttime setting will stay the same.  It's set to give him a tidal volume of 200cc so his pressures will go anywhere from 19-25.

Candy came in to schedule next infusion which will be February 5th.  I really hate going to the hospital during the flu season but it's got to be done.  We have to keep on track so we can get these infusions DONE.

Found out we're due for MDA clinic on November 27th.  We'll see Dr. Lahiri, Dr. Benjamin (rehab) and Dr. Bingham (neuro) and Linda LaShure the dietician.  We had labs drawn for D3 so we'll see if the 800units we're currently supplementing with is enough.  Have to look at calcium, too.

Oh, and we weighed the boys this morning.  Colin is 49 pounds and Casey is 70 pounds.  No changes from last time they were weighed about 3 months ago, but that's okay.

All in all we were there from 10:00 and were done at 2:30.  I think that's pretty darn good.

Stopped by the gift shop.

Ordered a pizza from NY Pizza oven so we drove home through the bay.

Gave the boys some Tylenol when we got home.  Casey wanted to hang in his 'old' room so Julie set him up with his e-reader listening to Marcello in the Real World.  She had a bunch of his fish/dolphin lights on so he was happy.  He was very quiet and pale and sleepy looking.  Colin seemed pretty normal.  He watched his shows in the living room.

Headed to bed early.  Boys were out quickly.  I slept in bed with them so they would feel extra safe and comfy.  They slept really, really well.

I got up around 1:30 to check out the election results and was happy :)  Went back to bed and slept like a baby. 

30 Days of Thankfulness--November 5--A Place

30 Days of Thankfulness - November 5- A Place

Kate's Place in Harrison, Maine is one of my favorite places. We've been fortunate enough to spend time there as a family for two vacations.

Butch and Sue are two of my favorite people and

they opened their home to SMA families to get away from their regular lives and enjoy some relaxing time on a beautiful lake. Sadly, Sue passed away a couple of years ago and is greatly missed by many. I'm very thankful that we were able to spend time there and hang out with Butch and Sue by the campfire and enjoy some s'mores and some laughs. And we'll always remember the adventure we had on the lake when the motor on the pontoon boat failed and we were stranded in the middle of the lake! (remember we have two boys that rely on batteries for ventilation and suction!). We also loved taking the boys to the wild life park. So many memories were made and will be cherished.

Frost on the Pumpkin

Made this the other day.  NO one who has tried it has ever disliked it!

This dessert came to my attention by a friend that I used to work with.  I really, really don't enjoy pumpkin, but I tried it and I liked it!  I've made it once every fall season since.  It's very rich--a little piece will do!


Ingredients for cake:

2 cups canned pumpkin (I used a can which is just under 2 cups)
1 can evaporated milk (12 oz)
1/2 cup sugar
1/2 cup brown sugar
1 1/2 cups chopped pecans (I usually use walnuts since I usually have them in the cupboard)
3 eggs
1/2 tsp. cinnamon
1/4 tsp. nutmeg
2 sticks margarine or butter (sometimes I use 1 stick of each)
1 box yellow cake mix

Ingredients for frosting:

8 oz. cream cheese
2 cups confectionary sugar
1 cup cool whip (you may increase or decrease to change sweetness to your liking)

9X13 pan
wax paper


Step 1: Preheat oven to 325 degrees
             Grease 9X13 pan, then line with wax paper and grease (Pam with butter works great)

Step:2  Mix pumpkin, milk, sugar, eggs, and spices.  Pour in prepared pan.

Step 3:  Sift cake mix over pumpkin mixture

Step 4:  Spread nuts over cake mix and press down slightly

Step 5:  Melt butter and then take off heat.  Pour butter over nuts.

Step 6:  Bake until firm in the middle (In my oven it tok 1 hour and 20 minutes) the original recipe says 60 minutes.

Step 7:  Cool completely.  Then flip cake over onto serving plate. 


To Make Frosting:

Use mixer to combine softened cream cheese and powdered sugar.  Add cool whip to your liking.  (I make the frosting when the cake is baking and put it in the fridge to firm up)

I also store the finished cake in the fridge because of the frosting ingredients.

30 Days of Thankfulness - November 4- A snack

30 Days of Thankfulness - November 4- A snack

Does this count as a snack, lol!

I guess it's more of dessert, but I can eat ice-cream morning, noon, or night! I don't care if it's store brand or premium--I love it! (although I am partial

to Breyers Vanilla). If I have a headache or a stomach ache ice-cream can fix it (or at least help). I like it plain or all tricked out like this sundae with Breyers vanilla, Smuckers hot fudge, Spanish peanuts, whipped cream with a cherry on top. I am thankful for ice-cream and I am thankful for my husband who brings it home to me :)