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!!