Only two more to go!

Spent another day at Fletcher Allen getting the boys infusions done to increase their bone density.  Over a two-year period we have to go every three months and today was #6!!  We go again in February and then again in May and we'll be done.

We thought Nurse Lauren was going to work today but she woke up with a cold.  So it was just me and Nurse Julie.  Of course my timing of everything was off but we made it out of here only about 5 or 10 minutes later than planned.

Hit registration, which took a while, and then we went to the Comfort Zone.  They put us in a big room so we could be all together so that was good.  Casey went first.  After a lot of looking and warming up various parts, they tried his foot (where it was successful last time) but it was a no go.  Then they got his left antecubital on the first try, whew!  Casey kept everyone on their toes talking about his Google maps and songs and such.  They got Colin on the first try in his left antecubital as well.  Another whew!  His poor little hands were dripping with sweat but he was congenial.  The Comfort Zone nurses are used to working with kids so we had lots of joking around and some singing, oh my.

Headed up to the Children's Center.  Some waiting.  Check vitals.  Head to the Bay.  We waited to make sure their pre-infusion labs were good and then we got them out of their chairs and settled onto the beds. 

Colin all snuggled and watching a Charlie Brown's Thanksgiving while getting his infusion.

Casey is Google Mapping and chatting on his DynaVox while his infusions run.

Tylenol given.  Saline bolus given.  Get the word that labs were okay on both so the infusions run for 2 hours.

Casey had the Child Life Specialist, Jenny, to himself for a while and he loved it.  They have developed a relationship over these visits and enjoy each other.  She is a good sport.  She takes Casey's orders for this or that movie and tries to figure out what he wants. "Man, movie, funny...Christmas." They finally figured out he wanted the Jim Carrey's version of How the Grinch Stole Christmas and they didn't have it anywhere in the hospital!  They both got a chuckle out of that.  And, it's not on Netflix, either because she went and got an ipad and tried.

Colin was pretty easy today.  Some ows and one change of movie because he decided he didn't like it but other than that it was just routine.

Saw Dr. Zimacus, the endocrinologist.  Talked about maybe jump starting Casey's puberty with testosterone injections.  That's all I'll say here :)

Our only downfalls were:  both Julie and I forgetting to give the boys their 1 o'clock feeds, and Julie forgetting to bring an extra Trilogy battery.  Not bad for a long day at the hospital.

We actually had infusions done by 2:30 or so.  Packed up, in chairs, with coats on by 2:40.  Got the van by 2:50 and home by 3:20.

Again, I am soo thankful for our van, Nurse Julie and our hospital being so close and being so good to us.

Got home and started getting settled and Paul from Apria came with Colin's new heater.  VERY long story short, Colin's heater crapped out on Thursday. Sent a script for new one to Apria on Friday.  Apria came back saying they can't provide such a thing and to find a new DME.  PFFFTTT!  Luckily, we have two.  What would we have done if we didn't have 2????  Colin could NOT have gone from Thursday to Tuesday with out a heated humidifier.  Anyway, Apria couldn't figure out how to get one/bill one so they gave us one they had.  I appreciate that but find it totally wacked out that they couldn't figure out the paperwork and how to bill for one.  So many stupid changes going on.

While Paul and I were talking in the hallway, some drama was taking place in the living room.  Gene was lifting Casey of out his chair thinking that everything was unhooked.  Nope.  Feeding tube was hooked to pump which was in the backpack on his chair.  So, out came Casey's feeding tube with the balloon fully inflated!  Ouch!  Nurse Julie jumped to help and somehow tripped over Jaxon who thought she wanted to play so he started running around like a mad dog, and Julie landed in a not pretty way, but didn't land on a boy, so that's a good thing (they are laying on mattresses on the floor in the living room) but she did manage to break the end of the plunger piece of a syringe--who knows!  All is good.  Gene put Casey's g-tube back in--with only "a little dog hair attached to it" he said, ha ha.  I missed the whole scene!

They've both been given Tylenol just to ward off any aches or ouchies and are watching a movie.  Early to bed for both.  Casey always seems a little pale and woozy after his infusion but Colin is as perky as always.

I have to go clean up their room (looks like a whirlwind was in there!) and put away things from our trip today and make formula.  Oh, and I have to try to ready the 'aunt' room because Peggy will be arriving on Thursday!!!!

It's that time of year again....Christmas Bazaar time!

I've gotta give Gene credit here.  Every year we make the rounds of several Christmas Bazaars.  Gene is usually one of the only guys at these--besides the priests, ha ha.  Usually they are held the first day of deer season but this year they were a week early.  Anyway, he has to give up most of his day to drive us around, get the boys in and out of the van, and traipse around crowded church halls looking at Christmas things and mostly girly stuff--and he doesn't complain.  So, thank you, dear.  I really look forward to our tradition each year.

We headed out later than normal since we had the boys last night.  Casey was a PERFECT sleeper.  He didn't ask to be flipped once.  And, he didn't complain or even notice whenever I got in and out of bed and smooshed his feet :)   Colin, on the other hand, was a rotten sleeper.  He was restless and then the Trilogy started beeping for 'disconnect.'  He was using the Mirage FX mask and sometimes the side cave in and it leaks.  After a bunch of times getting up and fixing the mask, I finally swapped it out with the Wisp and he slept better.

I went up to bed for an hour or so this morning after getting up early, letting the dog out, feeding the dog, feeding the cats, giving the boys morning meds and starting the dishwasher...I try not to wake up too much while I do all that so I can fall asleep pretty quickly and it works :)

Nancy H came at 9:00.  Let the boys have a morning movie--Elf.  Then it was time to get the boys up and washed and dressed and in their chairs.  Aunt Chris came here to ride with us.  And we headed out.  Gas, ATM and finally we were ready for the bazaars.

We hit the Holy Family bazaar at the rec center first.  Maybe next year the new hall will finally be finished...Found a couple of books for the boys.  Colin picked out some sort of angel for me but I won't know which one until Christmas!  I found a pretty Christmas wreath pin for 50 cents.  Got some raffle tickets, some baked goodies and we were off to the next one.  Oh, Casey was very cooperative and did not 'yell' so that was a bonus.

Next we went to the Congregational Church.  Judy, Aunt Chris's friend was working the door so it was nice to be greeted by someone we know.  They have the nicest people at this church--everyone is so nice and accommodating.  I think the building used to be a house and it is very cool, unless you're in a wheel chair or can't use the stairs.  Lots of different levels and little rooms everywhere.  We were able to fit one boy and two of us on the first elevator.  The second one was a little trickier as it's very tiny.  Gene got Casey in and sent him down by himself--don't worry--it's kind of an open elevator and there are only about 5 stairs right next to the elevator.  He thought it was cool.  We didn't think we could get Colin on it since his chair is so long so we left Gene with Colin while we checked out some of the other rooms of crafts and food.  After a little while we see Colin and Gene laughing and snickering because he got him in the elevator!  Colin loved it--he was very excited that he got to go in it by himself and that he had to sit WAY up--like he never does.  Found a couple of goodies.  Got a gift for Aunt Julia.  Colin loved the ride up the elevator again.  I wish I had my camera with me.  We NEVER sit him up like that and boy, does he look big!!

Then we went to Saint James.  We didn't bring the boys in.  Two was enough for them (although Colin really would have liked to go but he was in front of Casey in the van).  Alaina wasn't there this year with her mosaic cards but it was a nice time anyway.  They have the best raffle baskets there.  We've won one or two before and hope we're lucky again this year.  We were there pretty late so we were able to snag some cookies for 25 cents each, yum!

Headed home after that.  Tuckered out.   Crazy because we only went to three bazaars  but it's a lot of work and stress with the boys--physically having to get them in and out, pushing them up ramps, over thresholds and trying to avoid running into people and things.  Mentally worrying about sick people, worrying that the boys would be stared at, etc.  But that's part of daily life living with SMA.

Chilled out for the rest of the afternoon.  Google mapping, football on the ipad, scary shows and X-Factor.  

Middle School is exhausting!  Went to school today with Colin only for the morning.  No nurse today so Priscilla (para-eduacator) rode in the back with Colin over to the school.  She knows most of his blips and beeps so we're confident to do this.  That said, it was more stressful being there without a nurse but we did it!

Colin has his pictures taken and the Lifetouch photographer was very kind and took the time we needed.  It was great doing it on re-take day since there wasn't the huge mass of kids and confusion like there is during the initial session.  Still won't be the best shot but it's done.  I let him have his 'nose pickers' (bipap) on for the first time.  Just not worth the stress on him and me to try without.

Saw a bunch of our teacher friends.  Picked out a couple of graphic novels in the library (a Scooby Doo and The Olympians:  Zeus.

Then we headed upstairs to meet the crew to practice the evacuation plan.  The Middle School core classes are all upstairs so we needed to practice.  Saw some more teachers and school friends while we were waiting.  Colin got to show some of the teachers and kids a picture of him in his scary Halloween costume so that makes him happy.

He got very nervous and his hands were dripping with sweat when we were preparing the sled but did fine and even laughed.  We have a 6 person team and could do it with four if we had to, but it wouldn't be pretty :)  We have a huge sled that he lays on and we put his vent in there with him.  4 people carry the sled down the stairs and Priscilla is the door opened and carrier of suction.  I'm the carrier of the cough assist and rest of the equipment.  It's quite a production but we can do it fairly quickly and if we had to, I'd just grab Colin and put the vent on my back and carry him out.

After that, we still had time to catch a good chunk of drama class.  Colin got to see two groups perform.  He commented three times using his DynaVox!  Very proud of him.  Mel prompted him to pick his pronoun, verb, etc., and he said, "I liked the fighting."  "It was good."  and "It was funny."  He clicked the speak button right on cue.  Proud of him.

Many of his 'regulars' chatted with him and were glad to see him.  It still stinks when people who don't know him stop in their tracks and stare at him.  We try to take the opportunity to introduce him to new people but circumstances don't always let us.  But all in all it was a good day.

Got Colin inside and in his school spot.  Priscilla took a quick break and then they finished off the afternoon of school via VGo.  I was so pooped out that Gene watched Colin while I took a quick nap.  Nugget and I snuggled and had a power nap together.

Casey had an okay day after a meltdown in the morning.  Long story but they're trying to find a different spot for him for first block.  He had been going to the cafeteria but we were trying to find a spot where he could have some privacy to take off his coat, use the cough assist, etc., and he's balking.  He REALLY, really wants to be in the cafeteria with the big study hall.  Not sure how it will end up but for now he'll be using a class room where there's a small group going on so he won't be totally away from his peers.  This whole year is a work in progress, for sure.

So now Colin is watching a DVRd Celebrity Ghost Story, Casey is Google Mapping with his DynaVox while watching football on his ipad.  I have to go start the boys' five o'clock feedings and feed the dogs and cats---Feeding time at the Zoo!!

A Crappy Day turned Good

Today was the field trip with Colin's team to Northern Lights Rock and Ice.  It's an outdoor leadership and challenge facility.  I was a little hesitant for Colin to attend because he probably wouldn't be able to much more than observe.

Our PT found out that there was a giant swing that she thought he would be able to do.  I stewed over it.  Colin has done the giant swing at camp and it's fun but the way he's positioned wasn't ideal.  And, at camp there are docs and RTs and nurses and outdoor extreme people who all know their jobs very well and take them very seriously.  A lot of time is spent on safety and lots of precautions are taken.

Long story short, it was decided that Colin would use his evac sled or stokes sled and be able to lie down in it with all of equipment.  We tried it at home and took pictures.  Our PT sent the pics to some of the leaders so they were aware of what entailed Colin to be able to swing.  And, she brought the sled over early so they could see it.  So, that was settled.  We planned to have him go up early so we could make sure he got his activity done before we all pooped out.

Leading up to the day Colin was nervous.  He even told Priscilla that he'd rather stay at school and do MATH!  But then he got used to the idea and even thought it would be fun :)

OH, and the field trip day coincided with Nurse Nancy's last shift with us.  After 12 years of working with Colin she and her husband are leaving Vermont and moving to Florida. 

As I said on my Facebook status:

"End of an era here. Nurse Nancy Lanza just finished her last shift here. She was with us for 12 plus years. She started doing baby visits with Colin and eventually became a shift-care nurse when we started getting nursing coverage for him. She and her husband are moving to Florida. We are all very saddened here. We'll get to see her one more time on Tuesday at a little gathering for her but I won't want to say good-bye then, either. Colin says she'll miss her but I don't think he has a clue as to the huge hole that will be in his life without her. She was the best video game player and they conquered lots of Nancy Drew PC games, as well as others. She knows him like a book (well, as much as anyone can figure him out, lol!) and it will be tough goings without her. Of course, we wish her the best  :) "

Colin's teachers wanted Colin to go on the bus with the kids so Nancy, Colin and I got a ride over to school in the van by Gene.  He was going to drive the van up to Northern Lights later on so we could leave earlier than the kids.  We got to school and went to the bus.  Yay, there was a handicap bus!  But, don't get excited, the lift didn't work.  Tried and tried.  The bus driver said he had been taught to use it earlier and it worked.  I asked him if he knew how to use it manually, and I pointed to the bar that you use.  He picked it up and wanted to know where to put it.  I won't even go there.  I said forget it.  

And, yes, the bus company will be getting a letter from me ;-)

The kids were all on the bus and restless.  Priscilla was on the bus with our bags while we were outside with the teachers and the bus driver.  Priscilla came out, at one point, and said, "Unfortunately, one of the kids wanted to know why Colin had to go."  I was pissed.  Kids suck sometimes!  I said, not very appropriately, "Who is it and I'll kick his ass!"  She said it was a girl.  Huh.  I'd still kick her ass.  But, being the diplomat that she is, Priscilla didn't tell me who it was.  I was very frustrated and sad and my emotions were already running high because of it being Nancy's last day.  Colin was undaunted and was just his happy self.  I called Gene and had him come BACK to school with the van so we could drive up.  Colin's teacher really wanted to wait and have them send another bus or fix it because "we're a team" and all that and I appreciate that but I didn't want the kids to have to wait any longer.  






Gene picked us up and we dropped him back off at our house and we headed up to Northern Lights.  We've very lucky it's only about 15/20 minutes from home.  We got there not too long after the class.  Christina, the PT, met us up there.  Colin and Priscilla joined the group while Christina and I chatted with some of the leaders/guides.  They were very awesome people--reminded me so much of the staff at Double H.  Young and enthusiastic and very in tuned with the kids.  AND, they were very excited to include Colin and get the kids to understand INCLUSION.  

We broke up into small groups.  About 6 kids in our group along with Mr. Dabritz the humanities teacher.  Started off with a team building activity.  The kids had sections of half pipes and they had to work together as a team to pass a ball around the circle.  Lots of talk about teamwork and citizenship and talking things out and including every one. 

Colin was also able to participate on the Whale Watch.  It's a super huge, rectangular, wooden teeter-totter.  They lifted Colin right up onto it and set him in the middle and put his brakes on.  The kids had to get on one by one and try to balance it by working out who should go on what side of the teeter totter.  They never did get it balanced but had fun trying.  

Colin got to watch the kids climb poles and leap off and that kind of thing.  Then when the kids were still doing an activity, we went over to the swing area and got Colin settled on his sled and all strapped in.  Then the kids came over and the leader had everyone grab onto the sled and lift Colin up so he could get hooked.  Then they all gathered around and watched him swing!  Colin liked it and enjoyed swinging high in the air and flying through the woods.  When he was done, he said, "out, out." Then the leader had the kids hold the sled over their heads while he got unhooked.  When he got down, everyone cheered.  Again, they talked about inclusion and how people have different abilities but everyone wants to be included.  

That was that.  It was now lunchtime and we were ready to head home.  Gene headed out to go to lunch with Grandma, Grandpa and Julia, and Uncle Bill and Aunt Jean who were visiting from Texas.  We headed home to unpack and unwind and get ready for Priscilla to come back and finish the afternoon of school with him.  

I hate that Colin (and Casey) is so different than his peers.  I honestly think it hurts me more than him.  He isn't a very social kid but I'm sure he'd love to have a friend who could understand him and hang out and play wii with him.  Someone who would not have any qualms about being around someone who needs to be suctioned, repositioned and basically needs help with everything.  But then, again, he's never known anyone like that so maybe he doesn't know what he's missing.  I wish I could be that friend, and in a way I am, but I'm still a parent but I am his best friend, too.  Casey is his friend/brother, too, but there are many times that Casey annoys him so there are times he'd rather be with me, than Casey, ha ha.

Another thing that Colin has going on for him is that he is emotionally younger than his years.  In so many ways he is much more naive than his peers.  He tends to like books, movies, shows, toys, that most kids of his age have long forgotten.  That's okay with me, too.  I get to keep my boy younger for a little while longer.  AND, we don't have to deal with the drama of being a pre-teen.  But, then again, Colin has been exposed to so many more medical things than most of his peers.  How many kids his age have been taken in an ambulance and rushed to the hospital because they 'plugged' and went into respiratory arrest.  How many kids have been intubated and spent weeks in the hospital in the PICU.  How many kids need to use numerous machines every day to stay healthy.  So in this way he is more mature than them.  

All of these things add up to my boy being my boy so I'm okay with that.  I just wish I could have a tougher exterior so that I wouldn't think about what others think of my boy.  I'm okay with him. I wish everyone else could be.

It has arrived...

The cold bug has arrived at our house.  Casey has it.  Both Nurse Julie and Nurse Staci came down with colds this weekend (they weren't here over the weekend but were here earlier in the week),

Casey had an ear infection starting around Friday morning...Pretty yucky, some blood and some blobs of mucous came out...so maybe that was his start.  But, he was pretty much fine all weekend respiratory-wise but he was kind of fussy and restless Friday night but slept like a log on Saturday night.  Last night you could start to hear his voice changing and getting a bit froggy.  This morning he insisted he was fine but he was definitely starting to get drippy when he was at school.

So far he's hanging in there.  He's needed more coughing and we're just getting thin stuff out.  Funny how his oxygen levels stay between 98-100% when he's got 'junk in his trunk.'  His heartrate is definitely elevated.  He asked to go to bed early and listen to music so that's where he is now.  He says he feels hot but his temp is fine.  Parts of his body are icy cold while others feel hot to the touch. His nose is dripping and his eyes are watering.   I just loaded him up with some Airborne, Tylenol and some decongestant.  He's listening to the radio and watching America's Funniest Home Videos and humming/moaning/vocalizing like he feels yucky.

I guess it's no school for him tomorrow.  Bummer, because PT and OT were going to work on making a special splint for his switch. 

And, Colin, Nurse Nancy and I were supposed to go in for Picture Day and to try out the evacuation plan.  But, I've heard lots of kids are sick.  (Colin and Casey are in different schools) We could just go in for the pics and the evac and then go home and not go to any classes but still....there's always Make Up Picture Day but that falls in the yuckier sicker season.  Sigh.

On another note.  I went to my primary today about the ringing in my ears.  I've been noticing it lately but I could have had it for years and just not noticed/put it out of my mind.  It's been really bugging me lately though.  We live near a pond and in the summer we can hear the 'peepers' at night when the windows are open.  It's a sound I used to love but now I hear it ALL the time!  Imagine hearing peepers day in and day out.  Not fun.  If I'm really busy I don't notice it much--it's mostly at night when I lay down and I try to sleep.  But it's been creeping into my my daytime life now.

I took a hackneyed hearing test (it looked archaic and one nurse was showing the other nurse so it was kind of weird) which showed my hearing is good.  No ear wax, no fluid.  It's just one of those things that happen sometimes when you get old.  Maybe I'll be lucky enough that it will just go away and not get worse. 

Flu shots and tube changes and sleep

Just a quickie.

Both boys got their flu shots on Friday the 13th.  I hope that's not a bad omen.  Nancy L went and picked them up at Dr. Queyquep's office and gave them.  Casey was a champ.  Colin had crocodile tears in anticipation and then he was completely fine when it was given and over.  He still got a Veggie Tales Band-aide to help him feel better after the ordeal.

Saturday morning the boys slept in until after noon.   CRAZY!  Not sure how much sleep they got but I'm guessing about 14 hours.  They wake a bit with their nighttime cares and such but fall right back to sleep but it's still not quite straight sleep.  I actually was getting a bit bored so I decided to have lunch.  Usually the minute I touch food the boys need something or the phone rings.  Today--nothing.  I ate in peace (except for the cats and dogs staring at me).

Mic-key button (g-tube) changes were next.  Casey's went quickly and smoothly by Dada.  Colin requested me to do his so I tried.  I'm pretty squeamish about it which didn't make it easier.  Gene had to take over since it didn't go in so smoothly.  For some reason Colin's has always been a little trickier to replace.  I still remember the tough change back in 2005 when I was on the phone with Karen freaking out because Gene couldn't get it in.  I have a list of dates/person changing tube/how it went in each of the boys charts.

Casey had a tub bath and then a trach change.  It was about a week early but he had been having some deep stuff so we decided to do it a week early.  Came out clean.  I know it's weird--for those people who know about trachs--but we only change Casey's trach once a month unless we feel something is going on and he needs it sooner.  And, actually, we did do that once or twice this summer and got yucky plugs out attached to the bottom of the trach but that's not a regular occurrence.  

I got a lot accomplished while they slept.  I actually feel good about what I got done this weekend and it's still only Sunday morning.  Gene went out and bought some boards to make the trim and window sills in the kitchen/entryway.  It's only been about 3 or so years since we had the windows replaced.  We'll see how far he gets with the trim.

Colin woke early this morning and was humming to himself for a long time.  Not ready to be up for the day so added a blanket and snuggled him in and he was happy for a long time.  Casey 'blew' at about 9:30 so the day has begun.  Colin requested Batman and Casey requested football on the ipad.  That's where we're at. 

Scary time, hair cuts and Disney Infinity

I'll preface this by saying Casey is okay :)

Nurse Julie and I took the boys to the U Mall today for hair cuts and to pick up the Disney Infinity wii we had on reserve that finally came out.  We had a good time tooling around.  Casey drove his power chair some.  I love letting him go way ahead of us and watch him go.  Today he was interested in the nail salon :)

The hair place was busy so we shopped some more.  Colin was very excited to get the Infinity wii that we've been hearing about for months!  I gotta give the guys in GameStop some kudos.  Every single time we've been in there they have been so cheerful, helpful and knowledgeable.  I mean, these guys are true geeky gamers and I don't think there's a game they've never played! 

Hit McDonald's in the food court for a 'snack' and a sundae.  A woman came over to us and asked us if the boys had SMA...wild, huh?  Turns out it is our little buddy Asher's paternal grandma.  We've met his maternal grandma Patti.  She was very nice and we chatted for a bit.  We also chatted with Mel (Casey's old para) for a while as she was there shopping with her Collin. 

Finally it was time to hit the hair cutting place.  Colin went first.  It went okay although she had a hard time using the clippers because of the handles of his chair.  Colin was, "Ahhhh"ing as he loves to get his hair cut so he kept us entertained.  Then it was Casey's turn.  He was in his power chair and the head rest doesn't come off it it easily like his manual chair so I was holding his head and moving it where the stylist needed me to.  I got kind of tired after a while so I asked Julie to switch places with me (she was hanging with Colin),  She took his head out of my hands and said something like "he doesn't look right."  And, OMG, he was dusky, and the most awful color.  After that things got kind of crazy.  Of course we had the cough assist in the van--almost brought it in but decided not to.  MISTAKE!  He was still conscious and would blink but couldn't make noise.  NOT good.  We got the ambu bag out (it give him direct, big breaths via his trach) and suctioned his mouth.  Got some out.  Suctioned his trach. Not much.  Still not making noise.  Julie did what she has always said she'd do if she had to--She BREATHED BIG BREATHS RIGHT INTO HIS TRACH!   And, he started making noises!  That's when we knew he'd be okay.  Somewhere in there 2 stylist and 1 customer were there not knowing what to do.  One of them asked if we should call 911 and I finally said yes.  For some reason she went out in the mall to summon someone???  I ended up talking with someone on the phone and said we were okay.

The stylist and customer were so kind but pretty shattered.  I told the customer (an older woman) that I hoped her hair cut would be straight because the stylist's hands were shaking so badly!  She laughed and said she was just getting foils and that her coloring would probably be the best at the wedding she was going to!  I took the opportunity to spread SMA awareness  and gave the 3 people our cards with SMA info on them and I had two cards left from The Getty Owl Foundation that I gave them, too.

Casey looked very pale for quite a while.  I'm hoping some of it was the lighting.

But, those of you reading this that have SMA kids that have had such an episode you'll know how quickly our kids recover and act like nothing happened.  Thank goodness they are so resilient and forgiving!

Although, Casey did have some things to say on his DynaVox on the way home and after we got home.  He was talking about police man, hospital, etc.  (although this isn't totally unusual for him)  Later on he said, "because I was sad.  I couldn't breath."  (breathe).  My poor heart was so sad hearing this.  BUT I'm glad he's able to express this much because I know some kids can't. 

He is fully recovered now.  Had a shower and has a fresh trach :)   We were kidding him saying that Julie blew chunks of her McCafe and the caffeine revived him, ha ha.

Me, I needed a nap after that.  Phew!

On a lighter note...the boys and I started the new Disney Infinity wii game.  I'm really kind of not sure if I'll like it.  I wasn't even sure what to do.  I was hoping it would be a simple game and they'd guide you like Skylanders does.  I like having objectives and I think this game might be more of a free play but we'll see.  The boys were entertained while I tried to learn how to build, drive and combat.

Time for bed soon.  Tomorrow is a quiet day.  Casey has his art therapy and that's it.

Sorry no pictures!

Active cycle, dentist and the lift doesn't stow....

Busy day today although I wasn't very motivated this morning.  I felt like someone had slipped me decaf instead of my regular coffee.

After I got out of the shower this morning I yelled down to Gene inquiring what the temperature/weather was going to be today so I knew what to wear.  Well, he replied, "It's Christina is here to try Casey with the Active Cycle kind of day today."  Ooops, once again I forgot that PT was coming.  And, I hadn't put together the contraption using pipe and elbow connectors that she had prepared.  Big oooops.  By the time I got downstairs, they had the contraption (pretty much a cube shaped contraption) was together and Julie had Hoyered him into the living room.

The Active Cycle is an exercise machine that is motorized and make the bicycling movement.  Some kids with SMA have used them with success with their kids.  Some people call it the 'Poor Man's MotoMed' which is a high end and very fancy version of a machine used in Rehab and hospitals.  Our hope is that it will improve Casey's (and eventually Colin's) circulation and contractures in his legs.  Casey sits a lot at school and even though he gets out of his chair to lay down and stretch midday, he still come home with cold, purplish legs :(   And, we hope it will help stretch him out a bit and give him a consistent range of motion.

That said, it's a lot easier to say what we'd like it to do than to make it actually work for him.  I've got some good ideas to try from other SMA families and I think we're on the right track.

So you can see he's laying down and we're using the lift to hang some straps under his knees.

We have his AFOs on and his feet strapped securely to the pedals.

Our problem is that his hips are kind of UN-alighned, which is not a good thing but we're working on that.

Casey wasn't thrilled with the motion, but I'm sure he will get used to it.

After that, Casey showered, Colin watched a movie and then we packed up to go to the dentist.  For some odd reason, the boys kind of like going to the dentist.  I guess it's because their visits are usually pretty quick and easy.  Both boys have had a tooth or two pulled (that were ready to come out) but other than that it's mostly just counting teeth, checking gums, etc.

Casey went first today.  Dr. Bookwalter was pleased with his teeth and gums.  Casey does have a crowding issue and excessive gum tissue but it's not hurting him at all and it would be a huge risk to pull teeth and/or excise his extra gums.  So, his teeth are what they are and they are good :)   Dr. Bookwalter scraped a bit of his front teeth and behind them and then polished them a bit.  He is very pleased that he doesn't have a lot of build up of tartar or calcium as some kids do and he said he's at zero risk for tooth decay.

Casey likes joking around with Dr. B and we always have a laugh or two while we're there :) 

Colin went next and he loved it!  I really don't get it, but he does.  Weird/scary thing--last time Colin had 3 baby teeth; this time he has NONE!  I kind of remember that he lost ONE tooth inbetween the last time he was there and now, but definitely not THREE!   Where did they go?  It's always a scary thing to think about.  Colin has virtually no swallow--but could one have gone his throat?  We know of at least one SMA child that aspirated one into his lungs--a scary and not pretty situation.  I've also known of a child that had a tooth sit on his epiglottis for months, and this happened not once, but twice!  I guess we'll never know.  

Dr. B used the scaler on Colin for the first time behind his front top teeth.  He was pleased with his gums and teeth.  He said his molars are pretty much hidden from the pressure his tongue is putting on them but he doesn't see it as a problem. 

That was that!  We were out of there with no need to come back until next summer!!  For some reason, the boys are never given a toothbrush and prize anymore.  I used to ask but now we just leave it as a mysterious thing and go to the dollar store.  BUT the dollar store next to Timberlane is gone now so we decided to head to the one by the VNA.  It's pretty new(ish) and I've never been there. 

Of course it started to pour when we started driving.  Torrential rains when we got there.  Julie tried to encourage me to run in by myself but the boys really wanted to go so we went for it.  I found the poncho in Casey's bag but didn't want to dig for Colin's so we put a chux on him and made a run for it. 

Found a few things for school.  The boys really don't need anything since they do most of their work on their DynaVox's but I got Casey some sports folders and a football composition book.  Also got some Post-It notes since they use those a lot with him for spelling things and for words/phrases to add to his DynaVox.  Colin got some dry erase markers, a new blue pencil case and a big glue stick :)

The rain had taped to a drizzle when we went out to the van.  Got the boys in and went to stow the lift and NOTHING, nothing but a BEEP.  We fiddled and fiddled.  Tried re-deploying and bringing it up again, but no go.  I called Gene but he had no answers.  Julie figured out how to manually stow the van so we were finally good to head home.  The school bus lift has issues frequently so she had an idea of what to do. 

Got home and unloaded.  Gene was able to get the lift to work properly after a time or two.  What the heck???  Knowing Gene he won't want to bring it to anyone to get fixed/serviced and he'll probably try to work on it himself.  Sigh.  It had always rattled/banged some even when we first got the van back in January and I know they're supposed to be serviced regularly so that's probably part of the problem.  We had a different brand of lift before and never had such an issue.  So, time will tell what happens.

Happy Birthday to me (well, on the 28th)

This is a big birthday for me.  This year I am eligible for AARP!!  That means I am turning 50.  This is by far the birthday that has rattled me the most and made me think about my life.  I loved my 40s--although I had some blips physically, all in all it was a good decade.  Of course the best part of it was having my boys grow up and mature despite having SMA which was supposed to take their lives by the time they were 2.  Well, poop on SMA.  They are 16 and 12 now!

Anyway, I thought I'd share my birthday hoopla with you all.  My mom and dad are on their way up from Florida to spend some time with all of us and, of course, celebrate their baby turning 50.  They should be here on Saturday--just in time to celebrate on Sunday.  We'll probably have baby back ribs some salads and brussel sprouts for dinner.  Chris had me pick out my flavors of ice-cream and extras for a big, yummy special ice-cream cake.  I think I picked pistachio and moose tracks ice-cream, brownie base and some mini Reece's peanut butter cups.  Can't wait.  Not sure if we'll have the O'Neills over on that day, but we will get everyone together at some point.

Drum roll...my SIL, Peggy (Gene's little sister)is very generous and has offered to take me away overnight for my birthday to an inn in Bennington, Vermont.  She is a planner and loves to explore and shop and discover new things.  So, I'm adding itinerary that Peggy created so you can see what adventures we have in store for the two of us!

"DAY ONE

On or around July 30ish around 7:45 am, Sue will enjoy a leisurely drive down to Manchester VT while sipping on delicious coffee and a having a car picnic of croissant and fruit.

Sue might enjoy some window shopping in the Outlet Malls http://www.manchesterdesigneroutlets.com/index.php followed by a light lunch at the Marsh Tavern http://www.equinoxresort.com/assets/uploads/marsh-lunch.pdf

An exursion to the Northshire Bookstore is necessary http://www.northshire.com/for Sue to get a book to read later in the day.

After that Sue will appreciate the scenic 30 minute drive down to Shraftsbury to visit the Robert Frost Museum http://www.frostfriends.org/and if she feels up to it, she will relish a refreshing walk around the Healing Springs Nature Trail http://www.vtstateparks.com/pdfs/shaftsbury_springs.pdf

Then Sue will be escorted to her suite at the Ice House located at the Four Chimneys Inn, http://www.fourchimneys.com/ to freshen up before her 2:30 p.m. dry pedicure and deluxe manicure appointment at the Green Mountain Oasis.

After her appointment she will have a relaxation period where she can read a book purchased earlier in the day and nibble on a light appetizer of cheese and crackers.

After resting and relaxing, she will enjoy dinner at the Publyk House http://www.thepublykhouse.com/publyk_menu.pdf

The day is not over! Sue will return to her room for wine and dessert. 

DAY TWO

After an amazing night's sleep, Sue will waken to a hearty breakfast at the Inn. She will then depart for window shopping at Bennington Pottery http://www.benningtonpotters.com/, the Antique Center at Camelot Villages, http://www.antiquesatcamelot.com/ etc. She would also like to spend some time ooing and ahhing at the pies at the Apple Barn and Country Bake Shop http://theapplebarn.com/

After a lovely morning, Sue will enjoy a lunch at the Madison Brewing Company

www.madisonbrewingco.com

Sue will spend the early afternoon visiting the 5 covered bridges of Bennington County

Then at 2 pm she will have a 60-minute massage in her room, followed by a long nap.

Dinner will be at Allegro Ristorante, for northern Italian – www.vermontfinedining.com

DAY THREE
After breakfast at the Inn, Sue will pack up her lovely things, say goodbye to the Innkeepers and then head out to the Bennington Museum http://www.benningtonmuseum.org/visitors-information.html

She will then head north and have a quick stop for lunch at an eatery - perhaps in Vergennes at the Black Sheep Bistro http://blacksheepbistrovt.com/

She will return home around 1-2, feeling refreshed and happy."

Who is jealous????

Happy 4th!

Phew!  It was a steamy one today!

The Milton Parade was fun this morning.  We all got baked but enjoyed it.  We were going to park at a friend's house but ended up parking at the grange hall.  We got there early enough that there were some spots left.  Wish we could have found some shade...I forgot the boys umbrellas :(

We enjoyed all the floats, sporty cars, firetrucks, military personnel,dancers, horses, etc.  Wish there had been more music and bands--what's up with that???  The boys got showered with goodies:  mini frisbee, flag fans, flags, bottles of water, glow sticks, and tons of candies!  We even got tossed a 'Greenies' dog bone for Jaxon!

The bit of a breeze and some clouds helped make it bearable but when those clouds went away it was HOT!  We were right near Randy's Lunchbox and they offered to move some tables for us so that we could use their umbrellas for the boys.  And, they very kindly offered some cool cloths but since we had the Frogg Toggs cooling cloths I asked them if they'd refresh them for us, so they did :)  Thank you, Randy's Lunchbox!

We chilled out (or tried to) this afternoon.  Casey got a shower and watched some football.  Colin played some computer with Nancy.  Moxie, Jaxon and I had a little nap in the AC, aahhhhhhh!!

Gene had Julia drive him up to Underhill to get his motorcycle.  I know he wanted it badly, but it wasn't the best afternoon to do so.  He got pummeled with rain.  He stopped at his parents for a while and when he went to leave, his bike wouldn't start.  Bummer, as it had been up at his friend's house and they did all sorts of stuff to it and replaced some parts and it still doesn't want to start when it's hot.  But, he made it home safely.

Now we're deciding whether or not to head to the fireworks tonight.  In a perfect world, we'd all go and have a great spot and have fun and not get stuck in traffic.  But in the real world, it could rain/thunder, we might not get a good spot, we might get eaten by mosquitoes, Casey could hate it, and we might be stuck in traffic for an extended period of time.  So, we're not sure.  Just heard that the fireworks were happening no matter what, so now we decide.

Casey said with his DynaVox, "I don't want to go tonight."  I asked him why and he said, "because sad."  Not sure what he meant but AC asked him if he was scared and he said he was scared of the noise which is historically correct for him.  I hate to make him but it is supposed to be the best fireworks ever in Milton.

Some of my favorite quotes

“The child must know that he is a miracle, that since the beginning of the world there hasn't been, and until the end of the world there will not be, another child like him.” Pablo Casals

"While we try to teach our children about life,

our children teach us what life is all about."
~~Angela Schwindth~~

Pablo Picasso:
“Each second we live is a new and unique moment of the universe, a moment that will never be again.  And what do we teach our children? We teach them that two and two make four, and that Paris is the  capital of France. When will we also teach them what they are? We should say to each of them: Do you know what you are? You are a marvel. You are unique. In all the years that have passed, there has never been another child like you. Your legs, your arms, your clever fingers, the way you move. You may become a Shakespeare, a Michelangelo, a Beethoven. You have the capacity for anything. Yes, you are a marvel. And when you grow up, can you then harm another who is, like you, a marvel? You must work, we must all work, to make the world worthy of its children.”

A Friday that felt like a Saturday

SNOW day for the boys today!  The boys got to sleep in.  They don't care about the snow but they do like the sleeping in part.  We didn't get the call until 5:45 AM but I had pretty much made up my mind that I'd keep Casey home anyway.

Nancy L and Julie made it here fine.  I kept asking Nancy if she wanted to leave early (since she lives pretty far away) but she said she was fine since it was just snow and it wasn't blowing and it stays a lot lighter longer now than in say, December.

So I did a lot of the little things that I never get done around here while Nancy and Julie entertained and took care of the boys.  And, I did all

Gene worked most of the day.

The boys and I caught up on Idol.  

I finally got him to make my soup; kale, white beans and spicy chicken sausage.  It turned out pretty good. 

11 Days

It's been 11 days of sickness here.  BUT, I am declaring, today, that the boys did NOT get it.  Gene and I were the sick ones.

This was a bad one.  Gene and I were terrified that the boys would get what we had.  Somehow they stayed well.  I attribute this to how their immune system has been built up through the years and the Sambucus Immune Syrup that I've been giving them daily this cold/flu season. I truly think that the balance between keeping them home in a bubble and going out in the world among the germy people has worked in building up the boys' resistance to catching sickness.  Still, it's always a crap shoot because, honestly, a mere cold could cause the boys severe respiratory distress despite their immune system and our cautiousness. 

Gene started with something on the 16th.  He took to his bed (I ended up in the aunt room since he contaminated our room).  We didn't see him for about 4 days.  He had to help a little bit but mostly stayed away.

I got it towards the end of his fourth day so he was able to help out more then.  Thank goodness!  Lots of sinus stuff, aches, ugh.

So happy the boys stayed healthy!  Really is a miracle.

Humanities Camp with Colin

Here we are.  In the non-air conditioned library.  Poop.  Hopefully, we won't melt.  So far he's doing okay.  It's hard for him to keep up using his DynaVox, but Courtney is here helping Kristie brainstorm and work things out.  I helped Colin pick Prince's "Batman" theme for a song that describes him.  The lyrics aren't too inappropriate :)

We've listened to folk, blues and now jazz, and are discussing the differences in feelings they evoke, instruments, lyrics, themes, etc.

Gene dropped us off so Julie and Casey could take the van and go to the library and then pick us up at 2:00.

Disappointing day (but it was beautiful weather!!)

The engineer from UVM was supposed to come today to meet the boys and check out their switch access and see if he may have some ideas on making things easier and more accessible for the boys.  Claire (OT from school who initiated all this) called me early this morning to let me know that he had to cancel for today.  Bummer!  He's working on some big project and needed the time to do it.  We'll look at scheduling again for a couple of weeks out.  BUT, she didn't call me too early because I already had my special brownies made!  So the nurses, Aunt Chris and I got to enjoy them instead of having to share them with the UVM engineer and school people :)  They were most excellent.  Very fudgy with chocolate chips inside and chocolate frosting.

Then we got the boys ready for their first neighborhood walk this summer.  Nancy decided to take Casey's manual chair instead of his power chair (she isn't the most confident of manueverers) and Casey isn't ready to drive on Route 7 (they only have to go a little way on the main road).  But, I'd like to be there the first time he uses his power chair for a walk like that.  Anyway, he didn't mind.  I wiped it all down and put the fresh covers on the seat so it was all fresh.  After being in Julie's car for a week it had pollen all over it!  The boys hit a garage sale but didn't want anything.  I'm pretty surprised but sometimes they're like that, ha ha.

I had the house to myself for 55 minutes!!!  The phone didn't ring (I should have thought to silence it) and the animals were quiet so I had some real quiet time.  I heated up some leftovers from dinner--yummy grilled chicken breasts and some spinach sauteed with bacon and walnuts and a big glass of water.  I sat for the whole meal!!  Watched my judge show and enjoyed the quiet and wondered how the boys were doing ;-)

Boys and their Nana's (two Nancys) did their own thing when they got back.  They were a little warm but it's not humid at all.  Beautiful, tiniest bit of a breeze, blue skies, about 83 degrees.  Ahhh!

My other disappointment came when I learned that Casey's vent did not arrive at the Apria branch.  I was pissed!!  It was supposedly ordered on Tuesday.  Thought it would be in on Thursday.  No such luck for Thursday.  Called today.  NOPE!  No one had tracked it or looked into why it hadn't come.  I was livid!  I tried not to take it out on the RT but where was the branch manager???  ON VACATION!!  Ridiculous!   I am very thankful that we weren't planning on going out of town this weekend.  Long story but RT called back and they have a vent that was going back on the shelf and the RT on call will grab it and bring it if needed.  I guess we'll have to bag him or I could try to set up one of Colin's for him...I'm kind of worried because this vent has the same tag on it saying it needs to be checked in June of 2013 which is what the one that gave the "vent inoperable" reading on Tuesday.

Brought Jaxon out for two Frisbees plays today.  One time he went down by the pond and dropped the Frisbee and started toward the street.  Not a good thing. But I held up the other Frisbee and called to him and he came back, thank goodness!

Watered the front (and only) garden this evening.  I went out with my rain jacket on (first jacket handy) so I wouldn't get eaten up by the mosquitoes.  This way I only had to swat away by my face.  I hate that they are so rampant this year.  They're even out during the day hours. 

4 Pamidronate infusions down; four more to go

We made it through another long day at Fletcher Allen Health Care getting Pamidronate infusions.  The boys are getting these in hopes of increasing their overall bone health and, hopefully, avoid breaks.  The boys have each had a couple of broken bones but we truly have been lucky in only having a few compared to many kids that suffer multiple breaks.  And, all the breaks we've had have been before we started the infusions.

Anyway, once again it took us longer to get the boys ready for the day, up in their chairs and out the door but we made it to the Children's Specialty Center by 9:50 which was only 5 minutes past my goal :)   We had to wait a few minutes before we were called back, but not very long.  Vitals taken and weights recorded and then we went and settled into the infusion bay.

We got Casey onto the bed and comfy.  He certainly had his moments of grumpiness and loud vocalizations but he also cooperated and read some of the Spark notes on My Sister's Keeper with me.  The child life specialist also came and spent some time with him chatting and changing the TV and movies.  We all had our turn entertaining him!

Colin stayed in his chair but next time we'll get him out so he can be repositioned better.  He gave us a lot of "ows" but mostly because he didn't like that he had to keep his arm as straight as he could.  the nurses got right to warming up both boys arms with hot packs and towels.  The IV nurse got his vein on the first 'pick'!  She drew the pre-infusion labs (calcium and phosphorus) and also Vitamin D that I had requested since we've upped the boys daily dose in hopes of getting their levels up.

Dr. Zimacas came in and I updated him on the boys diets/supplements.  He'd like them to be getting more calcium so I'm going to ask our nutritionist to sit down with me and work on the boys diets.  It's been about almost two years since we've taken a detailed look at everything.  The boys nutrition labs have been good so I'm not wanting to change much but I'm sure it will be good to go over everything again.

Both boys were examined by Dr. Z.  May need to get an ultrasound of Colin's 'package' but he said it's low on the priority list and not to worry too much.  We may need to look at jump starting Casey's puberty but we've still got time so nothing to do in the short term.

We will schedule the boys for a dexascan next time to see if we can get a picture of their bone health.  Years ago we had them done and the results were not very valid.  With Casey's fusion hardware and how we positioned Colin they didn't get great pictures.  This next time we'll look at different areas to scan on the boys and hope we can get a baseline so that when we're done with our two years we'll take another scan and hopefully see that we've been making a positive difference.  Of course, not having any future breaks will be the real test, and the best reward!

All in all, everything went pretty smoothly.   Casey got pretty chokey and full of secretions at the end and Nancy had to trach suction him several times.  Next time we'll bring up our cough machine or order one from respiratory.  MAYbe we'll have the new, portable version and it will be easy to carry instead of having to bring the big ole honker on the luggage rack.  I gave Dr. Lahiri a list of things to put on a script for the Respironics T70 Cough Assist.  I've been waiting for the branch manager at our Apria to look into getting one but I don't think he's looking very hard.  If he has the script from the doc he'll have to start doing some fancy footwork, I hope.

We got home at about 3:30--took awhile to cough Casey in the valet parking area and get them loaded up and on our way home, but we did it!

Casey clicked some channels in the yellow room for a while.  Colin went right to his mattress with a big "AAAHHHHHH" and has been happy with his shows.  Brooke is here for the evening so she's wii-ing with the boys.  Colin is intent on watching and Casey is spacing out watching some football and being very quiet.  Casey seems to be affected a bit more by the Pamidronate than Colin.  He'll be back to his feisty self in the AM. 

Sorry no pics!  I could have taken some with the ipad but didn't think of it until now :)

Back in the stander again

We're hoping to get Colin back on a regular standing regimen again.  It's tough when he has to get his academics in as well as stretching and other PT activities, oh my!