Speech, Blood and Trilogy

Busy day today.  Got the boys up earlier than normal so they would be ready for Courtney to come for a SLP visit at 10:00.

Got through to endocrinology and got the okay for the boys to have their calcium and phosphorus taken today instead of the Wednesday and Thursday that they had indicated.  I guess I'm not so good at reading calendars lately.  Anyway, infusions on Tuesday would be a go if we got the blood work done ASAP so results could be read today....

Courtney (SLP)came and chatted with Casey about camp.  He kept talking about car racing (the ADK 400 which is kind of like a Pine Wood Derby race).  He said it made him sad.  Never did figure out why.

Cheryl came for a little while, too.  She's going to be working with the boys some for summer services.  She shadowed Priscilla a bit in the beginning of the year so we were familiar with her-at least Colin and I were.  Casey pretty much warms up to anyone so I'm sure she'll do fine once he puts her through the paces, lol.

Then we packed up and headed out to Blair Park to get the blood draws.  In the Given Building they have a lab set up now and it's part of Fletcher Allen.  We had a good experience there and we'd definitely go back again, which, apparently we will be doing every 3-4 months.  There was only one woman drawing blood but we were the only ones there so we were taken in quickly.  Gave Colin the choice as to whether he wanted to go first or second.  He picked second.

Casey did well.  She found a vein on the inside of his arm pretty easily.  She got him on one stick.  There's not a lot needed for these labs so he was done lickety-split.  Colin's hands got all sweaty and he was nervous, but she did him quickly and easily too.  Done!  The only drawback, if you want to call it one, is that they didn't even get a sticker!  I mean, I know they are 11 and 15 but I still like stickers and I'm on the far side of 40!

Headed home in hopes of Paul being able to bring over Casey's Trilogys.  He was able to, so we spent some time setting up the vents and trying Casey on it.  Well, once again he fretted and freaked and cried and fussed.  We've told him and told him that it will take some getting used to and that he may feel a bit sore (different chest muscles being used) and that Paul will NOT take away the LTVs until we are all feeling 100% happy with the Trilogy.  I truly think it's an emotional thing.  He says it feels different but okay.  I guess when you've relied on a certain machine to help you breathe for the last 10 years you develop an emotional attachment to it.  So, we'll give him time.

This afternoon and evening we've switched him back and forth.  One of these times, I hope, he won't even realize it and it will all be fine.  Tonight will be tricky.  We have the heated humidifier attached to the new vent so I'm hoping we can keep him on it more of the night than less since the LTV will just have a nose on it.

Casey's Trilogy Trial--finally

We got the call this morning that there really, really was a bed for us to come into the PICU to do Casey's trial on the Trilogy vent.  We got Casey up and in the shower.  We were out of the driveway by 10:30.  Checked in.  Settled in our room.  Then guess what.  We wait.  They had to get an okay sticker put on our humidifier and things like that. 

We got to catch up with a few of our nurses from the past, which is always a good thing.  Of course everyone is always amazed at how big Casey has gotten and how good he looks!

Somewhere around noon or 12:30 we actually put him on the vent.  We tried the same exact settings with the passive circuit and it was obvious that it was not going to work.  The vent is so smart and so sensitive that it was trying too hard to give him the Volume of ventilation that we had plugged in that it was going very quickly and giving him way too big PIPs.  We have Casey's current vent set at a Volume of 350 but that never gets delivered because his leak is so large.  The Trilogy tries to compensate for that and it was just a mess for him!  We could have tried plugging in a lesser volume but I've been wanting to try pressure for a while so this seemed like the time to try.

The pressure ventilation seemed to work well for Casey.  His chest rise looked good- better than the LTV has been to his chest lately.  They had an CO2 monitor in line and it was the same as on his old vent and on the new one. 

We won't get the vents until tomorrow or Monday.  They don't have all the stand in yet but that's the least of my worries.  I don't mind using a chair for a couple of days or propping it up some how.  We have to get bloodwork done tomorrow with both boys so the new vent may not end up coming until Monday.

So, how was Casey in this whole process?  Well, at first he was great!  He loved having the hospital TV, his ipad and his DynaVox going.  Later on, while we were doing the trial, he broke down and had a melt down.  I think it was the anticipation and worrying about change, and things like that.  We ended up giving him a 1/2 dose of Ativan but I don't think it ended up helping.  He finally calmed down but was on the edge melting the rest of the time there. 

We decided around 3:00 that we were good and ready to head out.  Took a bit more to get our discharge papers and we were home by 4:30.  As we pulled into the driveway, Casey started bawling again!  I think he thought we were going somewhere fun.

He still been fussing and melting on and off.  He hasn't been able to tell us what's wrong.  I think he is just glad it's done with and he's letting off his anxiety by fussing.

Colin had a good day.  He likes it when his brother is not around and he has control over everything. 

shopping boys

Perfect day for some shopping and getting the boys out and about.  It was the first day it's rained in 10 days.  So, Nurse Julie, Nurse Kristy, the boys and I headed out late morning.  We hit Jo-ann's first.  Believe it or not, the boys kind of liked it.  We found some ribbon for the boys' new orthotics.  Casey found some white ribbon with black music notes on it.  Colin found some green ribbon with monkeys.  Other than that, my mission there was a miss.  Still trying to find some material for a summer weight quilt for Casey that's boyish and has oranges and black.  I guess I'll know it when I see it.

Hit Aubuchon's next.  The boys liked it in there, too.  I found a pool float and Colin picked out a pool noodle in the most perfect shade of blue.  Also found some cartridge repellent thing Gene needs for a mosquito zapper he got off of Free Cycle.

I ran over to Price Chopper and got a pretty hanging basket for $9.99.  Pretty purple flowers that should do well out front...I forget what they're called.

We all voted to go to Christmas Tree Shop afterwards.  Spent quite a bit of time in there.  Kristy had Colin and Julie had Casey so I had some time to wander on my own.  Kind of weird. I wanted to find Casey to show him something.  Usually I can hear him vocalizing but the store was free of Casey yells.  Finally, I was able to hear him, but it wasn't his vocalizing but I heard his DynaVox voice!  Kudos to Casey!

I got a tub of Margarita mix to have when Jessi and Ernest come for dinner tomorrow night.  I've already mixed it up and have it in the freezer.  Found some plastic festive margarita glasses as well.  Some munchies, a couple of table cloths and a few other odds and ends completed my purchases.

Iparty was next.  Colin really wanted a hat that he found there but it was 12 plus dollars so I wouldn't but it.  I told him to ask Aunt Chris :)   I should have bought it because he really isn't one of those kids who always need to buy something.  There are more times than not he doesn't find something when we go to stores.  

Casey likes to buy for others.  Today he picked out a Jimmy Buffet book for Dad.  Some novel that has pigs in the title.  He found a large, edible nyla bone for Jaxon.  At iparty he found some Red Sox napkins.  Shhh, don't tell AC!

Some wii, Big Daddy on Netflix--not totally appropriate for Colin, but he liked it!  Now we're off to bed. Gene did some food shopping at Hannaford's so I was able to wash and sort the blue berries and hull and cutup the strawberries for tomorrow's dessert.

A good day.  Oh, except I was swiffer dusting my bookshelves in the living room and knocked off a cherub and broke it's head off.

10th year at Camp Inspiration

OUR TEAM:  (minus Daureen and Lauren) Gene, me, John, Spencer, Julie, Mav, Paige, Leslie, Colin and Casey

We had a great time at Camp Inspiration this year!  Can't believe we've gone every year since Camp Inspiration's inception in June of 2003.  Colin was just an itty-bit and Casey was only 5!  I remember getting the paperwork from Dr. DiMichele and thinking, "NO way" but then decided to apply and see what happened.  I think there were four or five campers and their families that first year.  Now the camp has room for 12 campers and families --this year I think there were 8.  I'm going to keep on trying to recruit more!

So happy that Daniel (Connie and Justin Sacripante) qualified this year to be a camper!  It was thrilling to see him experience so many fun things and get spoiled and loved on by the awesome counselors.  Justin blew me away by letting the counselors do so much of his care and was very calm on the outside although I'm sure he was nervous on the inside.  We never did get to 'babysit' Daniel so that Connie and Justin could have a picnic and some alone time, but I think they came out of camp recharged.  They even let the counselors and nurses hang with Daniel while we had our parent 'fancy dinner.'  And we were totally in a different building way up the hill!

Miss Mary and family were also able to come to camp, albeit only for 2 nights.  Mary has had a long winter of sicknesses and had just come out of the hospital.   Anyway, it was great to finally meet Mary and her family; her parents Kate and Ryan, Kate's mom, and little brother Jackson.  Mary was at camp for an hour before she went to the ropes course and conquered the giant swing!  What a trooper!

Colin's preferred activity was fishing.  Yup, fishing.  He caught lots of fish!  The first afternoon he caught so many we stopped counting at 10.  He had a couple flop off the hook onto his lap and he chuckled at that--me, I was a little horrified when I heard! .
Casey's preferred activity was holding the guinea pigs and rabbits at the barn.  Every year he loves doing this and the animals love him!  They may be a little skittish at first, but when they are placed on Casey's lap they calm right down and make themselves at home.  I'm sure he could have stayed at the barn the whole time if we had let him.

What else did we do???

We:

• swam two different days.   Both boys enjoyed swimming.  Sometimes Casey fusses about our pool, but he likes swimming at camp because it's a heated indoor pool.  I have to get after Gene to get a solar cover for ours.  One little mishap.  I didn't see if but I have it on video since someone had my flip camera.  Maverick was holding Casey.  Nurse Daureen came up to them and went to play with Casey's legs.  Since Casey has contractures, his legs didn't move like 'normal' legs so she ended up pulling his whole body!  Maverick held on tight and Casey only hit his head on the side of the pool but didn't go under :)    Casey and I enjoyed playing basketball with Mary.  We did pretty good!  Even though Casey is pretty big and has no control of his head or body, I am very comfortable holding him in the water.  I can hold him so that he sits on my knee (while I'm crouched) and then I hold this head and neck with my hand and arm.  I can bounce him this way and also use my other hand/arm to whack the ball.  Fun!  Colin showed off by swimming on his belly.  I can hold him by his chin and his body floats so it looks like he's doing the crawl.  He's not crazy about it but I'll bete it feels kind of good to be in such a different position even if it's a little scary. 

• went on a horse and carriage ride. We've missed our carriage lady and horse these last couple of years.  I was happy to hear the rides were back but then it was a different carriage outfit.  It ended up being really fun and worked out well for everyone.  There were two Clydesdale horses and a carriage with benches that ran down the sides.  (the other carriage was more like seats in a car).  The strongest men from camp were summoned to lift the kids chairs right onto the carriage!  It was great!  We all got to go together along with Tim from respiratory and our Lauren and Nurse Daureen.  We all could have ridden all day.  Anthony has a power chair so he had to be lifted our of his chair onto his mom, but it was okay for them, too.

• tried archery (first time for Camp Inspiration activity).  I didn't originally sign the waiver for archery since I thought it wouldn't be any fun for the boys.  Then I heard how they had made something very special that would be easy for most of the kids to use. I wish I had taken a better picture it but they were able to secure a bow to a table and made a special thingy so that it was really easy for the kids to pull back on the string. Of course my guys still needed help but it was pretty thrilling for them!   What a powerful feeling it was! 

• went on a nature hike and touched a salamander and called for Big Foot :)   One day we went on a walk with Outdoor Extreme and a bunch of kids and counselors and family members were there, too, so it was quite a group of us.  We learned about ferns and moss. We saw lots of salamanders in different stages of growth.  One of the kids (a new boy from Idaho) is obsessed with Big Foot and also knows TONS about the woods/forest and it's creatures.  I know he taught the Ourdoor Extreme folks a thing or two!  He told us all about Big Foot and called for him, too!  He had the big foot call down pat!

• made jewelry out of precious clay metal.  I enjoy doing this every year and seeing the ladies come back year after year.  I still need help making my jewelry--you'd think by now I'd know what I was doing!   This year I made a cutout of a star-like shape and put a smaller star-like shape on top of it with a red 'ruby' bling in the middle.  It came out pretty nice!   Connie had some of hers left over so I made a HH key chain for Casey to put on one of his back pack.  It's kind of a cool process.  When you first get this little piece of clay it's brown.  After you make what you want, it's dried in a special dryer and it turns into silver!  This link tells a little bit about it. 

• did all sort of things in arts and crafts.  I think Casey was up there more than Colin was.  Casey helped paint a wooden eagle for Father's Day.  they outlined it in orange and wrote on it in black.  Nurse Daureen put magnets on it.  Both boys also worked on their wooden race cars.  Colin's was blue, of course.  He called it the Blue Destroya (kind of after Dusin Pedroia).  Casey, well, he named his The Bare Biscuits.  His was 'naked' (no paint).  I do have to admit here that they put some rocks on the front and hid them under The Bare Biscuit sign.  But hey, after 10 years it was time for one of the boys to win!

• played kick ball.   I missed most of the game but everyone played hard and had fun.  I have some pictures which I'll share. 

• saw an awesome ventriloquist show.  Sylvia Markson-Fletcher and the Magic Trunk was so funny!  Casey was laughing so had which made it even better for me!  Colin liked it too, but I think he was laughing at parts that he didn't quite 'get' but that's okay!   She did amazing things with the audience and I laughed tears when she had Pez up there dressed like a Mexican woman playing the maraccas.  She had a mask on the bottom of his face that so that she could make his mouth look like it was moving.  Very clever material and just sooo funny!

• participated in musical therapy.  Tim Doak, a former camper and counselor, came with a friend and they made music and helped the group as a whole make fun rhythms and songs. Very cool!

• made marble paintings and fake poop in Discovery.   Casey was a little uncooperative when doing the painting but they came out nice.  Somehow there was some starch and I don't know what else in the water but you splattered paint on the surface of the water and then placed your paper on top of it and it would stick to the paper.  I wasn't there when Colin made his fake poop but I'm sure he liked it.  Later on Nurse Lauren tricked me by saying Colin had an unusual poop.  There was a HUGE lump on his diaper and I realized it was fake after a beat or two.  It was actually chocolate, I believe.

• ran in the ADK 500 (Casey was one of the winners!).   We had the ADK race inside at the stage area.  It was a little different than usual.  They didn't really have heats and they ended up with 3 winners instead of one.  Casey, thank goodness, was one of the winners, as well as Daniel!

The counselors were awesome, as usual.  Like Dr. Kathy said, 'Double H gets counselors from the cream of the crop and Camp Inspiration gets the cream of the cream of the top'.  Casey was glad to have Maverick back this year.  I warned him that he might not be there this year (one of these days he'll have to get a 'real' job, ha ha) but there he was to meet us.  Paige is a great counselor and really 'gets' the boys.  She has the BEST laugh and is always so positive and ready to go.  Having Leslie and Julie back was great.  They know where Casey is coming from and read both boys pretty darn well.  John Z was new to us this year and was an awesome fun guy to be with.  He picked up on the boys very well, too.  Spenser was kept on his toes catering to the boys as well!   Nurse Daureen was around as much as she could be and we always enjoy being with her.  You never know the adventures that you'll encounter when she's around!  She always makes sure the boys have what they need.

We were very lucky to have Nurse Lauren be with us Thursday through Sunday.  Lauren was Colin's nurse for about a year and a half.  She's still perdiem, but she left us to intern in the ER.  We miss her so we were happy she could take the time and be our nurse.  I knew she'd love it and fit right in and she did! 

And, to make everything so much more fun for Gene and I, Nurse Julie did overnights for us Wednesday through Friday!  I can't imagine I'd have had much energy if she hadn't done this for us.  We've had most of our camp nights covered for the last 3 years or so and can't even imagine how we did it before we brought night nurses to camp!  I know she wishes that she could have been with us more during the day to enjoy the fun, but she knows how important it is for Gene and I to be functional and to enjoy ourselves, so thank you to Julie!

• Ackkkk!  I almost forget to mention that Colin did the Giant Swing and Casey zipped down the Zip Line!   We fretted about the weather but it ended up being perfect for swinging and zipping.  Colin liked it but it didn't seem that he was as comfy as he was last time but he hung right in there through all the fussing and prepping and did great.  He was very proud of himself.  Speaking of proud, Casey did awesome on the zipline!  I know he was nervous.  He was pretty much saying so on his DynaVox before hand.  I forgot what he said but we know what he was trying to say.  He did have one meltdown while Colin was getting ready for the swing.  Mav, he and I were talking about school and he just burst out crying.  I never did figure out if it was because he was missing school or just didn't want to to think about it, or what?  He said he was mad at Mav, but we don't know why.  He actually went with Connie and a couple of the counselors on a walk away from the swing area and finally calmed down.  

• Oh, and the dance!  The boys walked down the red carpet and had their pictures taken.  Then they relented and let the counselors dress them up some.  All the campers took turns being introduced and danced their way through the crowd of fans.  My guys didn't last too long it there.  Excellent music but it gets very hot and loud so they end up in the ADK room watching TV and chatting and hanging out.  The parents had a dessert social while this was going on.  Brownies, whoopie pies, fruit and whipped cream, yum!

• The last night there was a cabaret dinner in the stage area.   Tables are brought it and we have our dinner there.  Then comes the talent show.  Casey blew us away by saying, "Home van tomorrow  Casey sad tonight."  He sure got his point across!   We missed a lot of the talent show because the boys had to get into their make up and costumes.  Of course the counselors wanted to be made up, too.  They got up on stage and danced crazy like to Kiss' I Want To Rock N Roll All Night and did a great job!  

• Sunday is pack up morning and awards.  Gene finally admitted why he always misses much of the awards ceremony.  He's made me mad the last couple of years because he does back to the room to pack up before the awards are supposed to start.  I always tell him to get back by 9:00 but he never comes back until more like 9:30.  Well, he says he does this on purpose because he gets teary-eyed and emotional watching everyone up there and hearing what the counselors have to say about the kids and the families.  NO FAIR because I always am teary-eyed the whole time, especially when we're standing up there.  It's just such a huge emotional feeling that I get because I realize how much these counselors do for my boys psyche and heart, thus mine as well.  It really boosts them up and keeps them going until it's time to go to camp again!  These counselors really want to be there and want to make a difference and they truly do.

Gorgeous night and a funny Casey convo

Gene is still in Laconia so it was just Nurse Julie and I this evening.  I was enjoying (believe it or not) going outside with Jaxon every two minutes because the afternoon/evening was so beautiful.  It was clear and cool and fresh and pretty much bugless.

I thought it would be fun if Nurse Julie and I were spontaneous and threw the boys in their chairs and walked to the diner to get creemees (actually I got a root beer float). It was perfect out for the boys. Ahhh! Funny thing. Casey had his DynaVox and asked Julie to read the newspaper. I had picked up the mail and he saw that I had a Buyer's Digest. He wanted the movie listings and they had none. While we were sitting at the tables, he kept looking over at the house next door. He said, "Newspaper house." We asked if he wanted to go next door and ask for a newspaper, and he laughed and said "yes". Julie teased him by saying go right ahead (since he only had his manual chair. Then he said, "Newspaper house drive Casey." He is such a funny kid!  So proud of his communication skills--they are improving by leaps and bounds by the day!