A plain old summer's day

Casey woke up early today.  I think Nurse Julie may have had something to do with it, ha ha. 

Casey wanted to watch Brother Bear this morning so that was what we did.  Casey is always thinking of Colin and making sure he is happy and wanting to do things with him :)

Casey had his shower.  Then Belly time and books.  I don't think he's really enjoying the one he picked from his reading list so we may have to change it.

.Colin had belly time.  Then he and I read from our Ghost Hunter book.  He was very excited and a little freaked out.  We practiced using the digital voice recorder that Aunt Peggy got him for his birthday.  And we played with the Ghost Meter (EMF=Electromagnetic Field).  I'm sure we'll never actually find a ghost.  Between the noise from his bipap and whatever electric particles his vent puts out, we'll never catch one, oh well.  It will be fun to try. 

It was HOT and muggy today.  Poor Gene worked and inbetween ran out and got some sand to level the area for the pool and later on he put the pool up one-handed.  It's filling up right now.  He put the ladder together but we still need to do the filter/pump and that kind of stuff.  It looks so nice and fresh and clean!!

What else.  Julie and I worked on getting Casey's Pandora, Gmail and Facebook on his (my old) ipod touch.  And figuring out his email and texting on his DynaVox.  Casey has used it but not often and we're rusty. 

Lots of wii played.  Julie and Collie played two different games while Casey worked on a Sponge Bob game on his DynaVox.  He is determined to do it.  But it's not easy.  You can't see the whole screen and he has to move the screen around and use clicks and it's all very cumbersome but he can do a lot of it himself.

Aunt Chris came and they played MORE wii.  Julie was able to get us passed the point in Where the Wild Things are that we couldn't do.  I was blaming it on a faulty Z button but Julie managed to get through.

Poor Gene worked his butt off today between work, the pool and other things.  Now he's off using his Price Chopper discount on gas.  I don't even know which vehicle he took.  There's always so much to do around here.  I wish we could scale back on "stuff".  Some of it we need, of course, but some-not so much.  And, the more you have the more you have to maintain and repair and clean and it all takes so much time.  Blah.

I made avocado plops today.  (avocado in the food processor and then put into med cups and into a container and stored in the freezer).  Formula, laundry, started putting away supplies and that's about it.

Now it's 10:00.  Staci is going to read a bit and then it's lights out for them.  I may watch a little Orange is the New Black on the ipad in bed in the AC.  Hopefully, Gene will get the boys' AC going tomorrow, although Staci said they weren't too hot sleeping last night.  I know it's hard for me to sleep when it's too hot and stuffy.

MDA Clinic

Stressful morning today.  We had to get the boys up and out of here by 8:15.  We made it out more like 8:30 but that was okay because my ETD goal had wiggle room.  Nancy H was here for Collie and Julie for Casey so we all did our thing to make this happen.

Of course, we get to Fletcher Allen and up to the Children's Hospital and we wait.  Actually, Colin, Nancy and I didn't wait too long before we had to go in for the blood pressure check, med check, etc.  But the medical assistant was going to find someone to do Casey at the same time and apparently that didn't happen because when I went looking for them they were still in the waiting area, sigh.

Then, when we were all together again in our room (thankfully they give us the procedure room since it's bigger than an exam room).  we had to wait a bit before we had anyone come in.  We saw Paul (PT) and he's going to get on Jack about Casey's order for his chair which includes a new headrest, air cushion and elevating leg rests.  It's been weeks and Jack told me the other day he was still getting quotes for the head rest pieces, sigh again.

Dr. Benjamin (physiatrist-rehab doc) came in and was energetic like normal.  He's a funny, crazy guy and talks about drumming a lot and speaks quickly.  We like him, it's just kind of hard to keep up with him, ha ha.  Talked about Colin's hands and how they are turning a bit and how they are puffy.  Not much to do but massage hands and try to prop them up when we can.  Talked about stander, etc.  No changes for him.  He had us put Casey's foot plate out a bit and put a pillow behind his knees to do a little stretching, which is good.  It will also help prepare Casey for when he gets to use his leg rests (if we get insurance approval) independently through his chair electronics with his switch.  Will be trying to do more belly time with him to work on his legs and hips. 

Saw Dr. Bingham (neuro) and caught him up.  I gave him some info on the happenings in SMA research at Nationwide Children's hospital.  Pretty exciting stuff which will require a separate blog entry one of these days.

At this point Casey was being totally loud and vocalizing and would not stop.  It was awful.  He wouldn't use his DynaVox to tell us what was up, he wouldn't blink yes or no.  He could not be distracted.  NOTHING would stop him.  I was pretty much losing my mind.  I couldn't think and couldn't speak with the doctors effectively.  It was so frustrating.  Julie didn't want to bring him out because that's what she thought he wanted and just wouldn't tell us.  Another sigh.

Dr. Cowan (pulmonologist) came in.  We tried to ignore Casey's yelling but it was hard.  We spoke of Colin's respiratory status (as we have done for a couple of years now--well, Dr. Cowan hasn't been here very long but we've discussed it with Dr. Lahiri as well), and how a trach is probably a good idea for Colin in the near future.  He's doing well, but he does do oxygen "dips" when he's off bipap and hasn't spent more than a couple minutes off of bipap for a long time.  We always talk about how if he does need to be intubated it would be next to impossible to do this without trauma to him.  If he needs intubating it should be in a controlled situation using fibre optics and not the emergency way which COULD happen.  Colin hasn't had a crash in a long time but who is to say that he won't in the future.  And, so far, he responds to coughs well, and Gene has blown in his mouth a couple of times in the past (nothing recent) and that has cleared him out.  Anyway, he's also going to need spinal fusion in the near future (before his curve gets bigger and compromises his lungs).  The docs aren't too optimistic about him going back to bipap successfully after a big surgery.  I'm on the fence about that but again, that's another blog. 

Dr. Cowan and I talked about me noticing that towards morning Casey's heartrate has been going up although he's still sound asleep.  I'm going to have the nurse monitor and log his heartrate and time and see if we see a pattern.  We also talked about having both boys go to the newly formed Trach/Vent clinic.  It would be with the pulmonary doc and Janet Deslaurier who is the head Respiratory Therapist at Fletcher Allen.  She will go over settings and equipment and that kind of stuff so we'll probably do that in the next month or so. 

Dr. Cowan is going to submit to Apria for the items we didn't get with the T-70 cough assist when we got Casey's recently.  Long story.  But we only got it with the bag and machine.  No battery, no accessory cord to use in a vehicle and no rolling stand.  We'll see.  We got those things (minus the rolling stand--but we hadn't asked for one--)when we got the machine a while ago for Colin.

She'll also take on trying to get NanoVM vitamins/minerals covered by insurance for us.  Some families pay out of pocket and some get it covered so we'll see about that, too.  She said she'd have GI write a strong letter if it doesn't get pre-authorized at the first shot. 

Dr. Cowan is great.  She trained with Dr. Schroth in Madison, Wisconsin.  Dr. Schroth is an SMA guru doc that many, many families go to and will travel many miles to have appointments with.  So, Dr. Cowan knows the SMA protocols and will help us with our nutrition and pulmonary concerns if we do go ahead with surgery for Colin.  And, of course, she would be there if we have ANY admission for either boy, so that gives us some relief from some worries, anyway.  

Casey was still vocalizing, "yelling", whatever you want to call it.  What the heck?  If you've never met Casey, you probably have no idea of how loud he can actually be.  Many kids with SMA and trachs are not able to be this loud (or maybe they are just more polite than my kid, ha ha). 

Casey really had me over the edge and I didn't ask some of my questions so I was quite pleased when Dr. Cowan called me at home later on to follow up.  Yay!

We went straight home because Nancy H was only scheduled for noon.  I think she made it out of here a little before 1 PM.  Again, we are very lucky we live so close to our hospital.

We got the boys settled into the living room.  It started to rain just as we were going inside. 

Julie ended up playing some wii with the boys.  I took a little snooze after I spoke with Dr. Cowan and after I chatted with Casey's school case manager.  Still trying to find transportation for Casey's summer school if things don't work out with SSTA. 

Aunt Chris was here for a while.  Gene didn't go anywhere today.  Very unusual for him.  I did some stuff in the wish room and watched Orange is the New Black on Netflix.  It's odd for me to get addicted to a show like that.  Especially with the theme of the show and how graphic it is (mature audiences, for sure!)--not like me, but I had read the book so I wanted to check it out.  I've just started season 2. 

Got the boys into bed a little earlier tonight but they were still up when Deb came at 10:00.  We had thought that Casey would drop off to sleep early after expending so much energy, but no go. 

Pretty productive weekend

Julia worked both days so we had some extra hands to do some projects and it freed me up from making formula, the beds, etc.

Today included:  cleaning the bathtub in the boys' bathroom, Gene replaced toilet seat, Julia cleaned it (I still have to do floor and the shower), bills got paid, desk got cleaned off, a few odds and ends I've been putting off got completed, Jaxon had a shower, then a brushing (note--next time brush dog before bathing), Jaxon's blankets and bed covers got washed, washing machine got a tub wash, sewed a button, Julia mopped floor in wish room, Gene ran back to Lowe's and got Miracle Gro, he actually ordered a filter for the fridge...and more.  Wish we had ONE more day in the weekend to do more chores, and maybe one more for actually enjoying the day, sigh.

The boys were mellow today.  Slept in.  (Colin was restless for Deb but not as restless as he had been for me the night before).  Watched a weird old Disney movie that Colin got from the library--something about a cat in space.  Casey was happy Google mapping and playing with some websites.  Colin got a shower and got primped. 

Now we're hanging in the living room and Gene is making a surprise stir fry to dinner. 

Feeling accomplished and it's only 3PM

Someone was not a good sleeper last night.  And it wasn't Casey, Gene, Moxie, Nugget or Jaxon.  I think I flipped this person a dozen times and he was "ahhing" and "mama-ing" for hours.  I tried sleeping in bed with him, talking to him, repositioning him, Ibuprofen, etc. and nothing worked.  I finally put another blanket on him and he went back to sleep.  I think he likes the pressure of a heavy blanket, just like he likes the pressure of rice socks on his feet.  Anyway, it was a long night.

At about 6:30 or so, I gave Casey his meds, flipped and changed them, filled humidifier chambers and turned them over to Gene while I went up for a couple of hours.  Ahhh!  Of course I woke up right at 9:30 when they needed their next dose of food while everyone slept on.  Oh well, I felt pretty rested.

Julia came up this AM because she hadn't worked for several days.  Boys were still sleeping away so she made formula and did her thing.

I made Peggy's Special French Toast for us and Gene made bacon.  Yum.

Discovered that the molasses had leaked everywhere so that created a project of taking everything off that shelf, washing things and putting everything back.  Then, don't ask how, but I dropped the coffee scoop behing the fridge which created another project.  Moving the fridge out, vacuuming behind it, cleaning the floor, puttting the fridge back.  Then we took everything off the top of the fridge (I know we're not supposed to do that but we have such limited room) wiped it down and organized the bags of coffees, teas, iced k-cups, regular k-cups, etc.  Good job done.  Oh, replaced the water filter in the Keurig.  Not sure if it does anything, but we had some so I did it.

Lots of loads of laundry done.  Cleaned boys suctions. 

Gene and I worked out front for a bit planting the rest of the annuals, mulching the flower bed, and watering everything.

Got Colin washed up and out to the living room.  Nancy H is here now and getting Casey ready for the day and up into his chair. 

OH, and Julia and Gene took the old pool down.  Now, of course, the old pool is still in the backyard and we need to do something to prepare the ground for the new one (vole holes, uneven ground, weeds, etc.) but it's a start.

Hello, Nana!

So good to see Nana Lanza( Nancy Lanza) today! We all miss her very much! Let's hope she gets up north again before another 8 months pass. Colin was a little anxious at first, but made his sad face/sad noises when she left. But, we'll see her again before she heads south, which is a good thing, because I didn't take any pictures!

Casey ears and first time at Trader Joe's

Casey's follow up with Dr. Hubbell went okay.  Casey's left ear was "moist" and looked like it had some debris so Dr. Hubbell used his trusty suction wand sucked it out :)   He wants us to treat Casey's ear with Ciprodex two times a day for a week.  He also had, at my request, a little talk with Casey about listening to music too loud with his ear buds.  I forget what words he actually used but maybe Julie will remember, but we were going to use them as our mantra when Casey asks to have his ipod music turned up.  I guess my poor brain is still fuzzy and tired from camp if I can't even remember, oh dear.

We were in the exam room for about 6 minutes tops.  I think I waited to make a follow up appointment longer than we were in the exam room, sigh.  But that's okay.

I turned the keys over to Julie and she drove us over to Trader Joe's.  Ran into Lynne Moon on her way out.  Good to see her, if only for a couple of minutes.

Casey and Julie did their thing and wandered around the perimeter while I poked around on my own.  Very overwhelming!  I had planned on getting some goodies to send to our counselors at camp so I focused on looking for snack foods.  Found some freeze dried blueberries, some yummy looking trail mix and some chocolate covered sunflower seeds.  Then I looked for the Orange Chicken that Jennifer always talks about.  Picked up some yummy sounding side dish with quinoa, sour dough bread and a Greek salad. 

Casey asked one of the employees if they had any magazines....that's my boy!!  Then he promptly asked Julie to take him to Barnes & Noble, ha ha.  He also wanted to buy Dada flowers so I had him pick out a bunch.  He picked out a very vibrant looking bunch of sunflowers. 

Awards, packing and home again, jiggety jig

Waaaahhh, today is a happy/sad kind of day.  Awards are given out and everyone spends time remembering all the wonderful experiences they've had.  But we also know that we are heading home and leaving some people that we will forever hold close in our hearts--and that we hope to see again next year.

I was up early (the boys slept pretty well for me but I didn't sleep well at all) trying to be quiet while I tried to organize things and do a bit of packing.  I even skipped a shower--just to give Gene some time to sleep in.

Got the boys up.  Nurse Daureen came early and helped get Casey ready.  Got the boys up in their chairs and headed for breakfast. 

Casey got a little bored waiting but held himself together pretty well. 

Awards tend to make everyone a little teary-eyed and this year was no exception.  It's always fun to learn more about the campers and their families by the awards that they get.  The counselors are always so creative.

Casey got the "Where in the World is Casey O'Neill" award.  It's a wooden airplane painted in his colors (green and black).  He got this because he tried to find wifi wherever he went so he could do his Google maps!  Colin received the "Hummingbird" award.  It's an eagle, painted blue, with his name and Hummingbird Award painted on it.  He got this because wherever he was at camp he'd be humming/singing to whatever song was on.  He's very cute when he does this :)   Gene got a wooden boat and the "Perfect Storm" award because he was a trooper when he and Casey went out on the pontoon boat in the pouring rain and he was the only one not covered by an umbrella or the canopy and he didn't complain one bit.  I got the "Mom Swap" award because the counselors all thought they'd love to have me for a mom for one day.  I *think* it's a compliment :).  They pained a wooden  box for me, signed their names on the back, and put tracings of the boys hands on paper in the box.  I'm to add keepsakes in the box.  They presented me with awards for Nurses Julie and Lauren since they had to leave Friday.  Julie got the Nurse Fly by Night (or something like that).  I think it was supposed to be some kind of an airplane made out of cardboard??  (not sure really, lol).  Lauren "Bull in a China Shop" award because she kept dropping things but nothing every broke, ha ha.  It was a decorated cardboard circle with lace around it.  Anyway, it's always a bittersweet time during the awards.  I can't quite put it in words, and unless you've been to Double H or another special camp like ours, it's hard to describe the atmosphere and feelings that run through...

We had time to do a quick change on the boys and get them settled into their chairs again, and finish packing up the room before the camp store opened.  Colin got into the van and hung with Matty while Casey and I hit the store.  Casey was very insistent that he go shopping in there.  We picked out three tee shirts (Casey had Tye-dyed one for Gene) and that's about all we got.  They had other good stuff but I didn't want to take too much time in there.  It's a small room and it gets very crowded.  We're hoping that they start putting more stuff on line so we can shop all year long.

Then it was time to go.  Hugging and all that kind of stuff.  No actual tears but it was close for Casey. 

The ride home wasn't the most pleasant.  No one was really comfortable and things were not very organized but we made it.  Julia was there when we got home, so that was a good thing.  She had mixed the formula and got the boys' spots ready, worked on laundry, etc.  Nancy H came a bit later.  I was able to get a bunch of stuff unpacked and equipment into being washed, etc.

Gene got the dog and we back to our regular lives again.  Already looking forward to next year!!!

Camp Inspiration; Day 2

Now let me preface by saying my I will probably not get everything we did on the blog and maybe even on the wrong days but that's because I was busy soaking in every minute instead of documenting what we did as it happened.  Hey- at least I'm attempting to recreate our time at camp!

The rain was coming (maybe it had arrived already but had stopped for a bit) so ropes was on!   Colin was the first, I believe, to do the giant swing this year.  He's not totally crazy about it but puts on his brave self and goes with it.  As you can probably see, he's in a contraption that makes him sit up more than he is used to even with our padding the bottom to help him lay flatter.  One of these days they will find something that will be more comfortable for the kids that need to lay down more.  But this is do-able, and it's safe.  There's a whole team of 'outdoor extreme' people that work on this and practice and figure out every scenario.  And, of course, there are the RTs and nurses and one of the docs that are always there helping out. 

Colin got all strapped in and secured and helmeted and then he was hoisted up and up!  We all took turns pushing him and he received lots of claps and cheers.  And, he got a Golden Ticket!! 

Then it was archery time.  We met up with Casey (I'm not quite sure why he wasn't at the giant swing supporting his brother but he was off somewhere--maybe fishing??)

Archery is cool.  They have one bow set up with a trigger so that it's easy for the kids to release it (they still need help) but it gives them some feeling of control.  The boys did pretty well and they definitely get a kick out of it!

We still had time in the day to snuggle some animals.  Colin was disappointed that the guinea pigs weren't back at camp yet (they get fostered out during the non-camp time) but he loved snuggling the bunnies.  A couple of them were still a little nervous but we had some good snuggle time. 

 Casey absolutely loves his time with the bunnies.  I wish circumstances at home would let us have a bunny but with the two cats and the dog and long Vermont winters--it just won't happen.  Sorry, buddy!

 I guess I didn't get a picture of the new baby donkey and I only took one pic of one of the mini ponies.  They were loving the attention and got lots of rubs and lots of brushing.

Camp Inspiration 2104; Day 1

All in all, we had a wonderful time at camp.  Yes, the weather was rainy but it didn't get anyone's spirits down and we had breaks of clear weather so that we were able to do most of the planned outside activities. 

We pulled into camp only about 15 minutes passed our expected time!  Not bad at all.  We were greeted by a group of people including our SIX counselors, RTs, Nurses and other staff.  Always fun to pull into camp!  We were all excited to see Matty D was back and Team O'Neill as a counselor.  Matty was one of our fun/cool/awesome counselors that we had for about 4 or 5 years before he went out into the real world to nursing school.  He is now an ER nurse but had the summer free before starting a new position in the fall.  Anyway, Colin really liked him and they had a special bond that they were able to re-establish very quickly :)

We also had some brand new counselors to Camp Inspiration and brand new to Double H!  They all were awesome and each brought something special to our team.   I wonder if we were a little intimidating to the newbies but if so, they didn't let on, ha ha.  I KNOW we are the loudest family at Camp Inspiration, and medically complicated but all the campers use either bipap or are trached/vented so we may not have been the most medically complicated/fragile.  Anyway, they all were super helpful and interested in the boys and gave a 110% effort to make the boys' time at camp special.

We were in Chipmunk again, same rooms.  We took out one of four beds so that we had more room in the boys' room.  The best thing was that there's now central air in Chipmunk!  It used to be kind of hot and musty but now it was much nicer.  A business came in and volunteered and painted some and replaced some of the flooring and added the AC.

We unpacked a tiny bit and then headed out to the Winter Carnival.  Each day had a theme and today was winter.  Up by Arts & Crafts they had a dozen or so games set up.  There was music and prizes and an all around festive atmosphere.  Both boys warmed up quickly and played most, if not all, of the games.  Casey even got his face painted.

After the carnival, the boys kind of went their separate ways.  Below is a picture of Casey with his fish, but I heard that Colin caught the first TWO fish of the camp season.  

Nurse Lauren arrived, sometime during the carnival which is a good thing because the boys like to go in different directions a lot and Gene and I can have more support and not have to be so anxious about where the boys are and who are they with and are they okay.

After some more roaming around, it was time for dinner.  I can't remember what it was, but in general, the food was really good this year.  I think the boys read some books while we all chatted and ate.  Nurse Julie arrived just in time for some dinner and to join us for our Team O'Neill photo.  I only got the silly photo on my camera, but there is an alternative one, ha ha.

It's hard to see but behind Nurse Lauren is the Double H tree that actually looks like an H and there's a plaque which I assume tells the story behind the name Double H.  I don't think I've ever actually read it!  

 

Then it was camp fire time!  This is a time when everyone gathers around a camp fire and many, many, many camp songs are sung.  Each team brings a special song that they lead the group in singing.  I think we did one about a moose.  I never remember the songs until someone starts singing and then all the words (well, many of the words) and gestures come back to me.  The boys laughed and chuckled and had a good time.  At the end of the singing, a special lantern is lit from the camp fire and will burn all week long, symbolizing all the fun and comradery of camp.  Then there are S'mores!

Team O'Neill in action

 Finally it was time for bed, but not before a book is read.

Pep and Casey having their read.

Matty D and Colin-Colin is pretending he's asleep already.

Nurse Lauren and Nurse Julie shared a room--not that they are ever in the room at the same time since Lauren did days and Julie did nights.  Very thankful for Lauren and how much she does for us during the day and very thankful for Julie who did Tues, Wed and Thurs nights.  Gene and I have so much more fun and are more rested and relaxed when we have help with the boys.  Of course the counselors help with what they can and aren't afraid to jump in and help.

Anyway, after Julie came Gene and I retired to our room and hit the hay.  Ahhh!