The train is running!  We just brought the boys in for a test run.  I think Sean and Tom thought it was as cool as Casey and Colin did!  Tomorrow they start on the ramp!

April 19:

Our ramp is awesome!  I will post some pictures soon. 

April 20:

The guys only have about a half a day of work left.  They've decided to put up plexiglass along the outside of the track to keep the train from derailing, crashing and landing on the floor!  We are off to get x-rays...so we won't be seeing the guys again :(

April 24:

The boys have been on vacation this week. We've kept pretty busy. We got spinal x-rays in preparation for our ortho appointment next week and then we took the boys to the Christmas Tree Shop!

Casey had a playdate with his friend, Erich. Erich came over and hung out for a while, then we stopped at McDonald's for some fortification and then went to our favorite movie theater. First, they played a bunch of games. I even held Casey and had Erich and Julie help him play a snow mobile one and a shooting one. We saw Robots. Everyone loved it! Aunt Chris, Nurse Julie and Nurse Nancy L, me, Colin, Casey and Erich all went. Casey was VERY good during the movie. He hardly yelled--Erich reminded him once or twice to be quiet and that's about it. The rest of the time he was appropriate, laughing and reacting like he should. (We've had issues at school with him "yelling" during reading groups and library time, etc.) Colin really enjoyed it. He laughed and giggled and had a grand old time! Afterwards, we came home and Casey and Erich played The Disney version of Sorry before his grandfather came and picked him up. Casey cried when he left!

We spent a lot of time outside, too. I raked up a lot around the driveway, TRYing to get this place looking better. SO much to do.

Casey got to stay up late and watch the Red Sox almost every night. He loves staying up with Dada. And, he loves sleeping in late. I hope he can get into the swing of school again.

Casey and Gene took a walk this evening. It had rained earlier, but then the sun came out and it became beautiful.

We changed Colin's g-tube last evening. We had noticed he wasn't venting at night and he was very uncomfortable. Last night he was pop, pop, popping away, so I guess it helped.

I guess that's our update for now.

April 25:

Pretty quiet day today.  Jennifer came and they read books about rabbits.  Then they did two projects:  one was a bunny out of pipe cleaners and the other was a picture of bunny parts that Colin colored and then they cut them out and then taped the parts, in the right places, on a piece of paper.  Colin seems quite attached to this project!  He was telling Jennifer, "hop, hop, hop!"

This week promises to be a busy one.   I just got a call from Dr. Lahiri's office reminding me of the boys' appointments tomorrow.  Ooops.  I thought it was next week! 

April 26:

What a day!  We are exhausted!  We made it out of the house, on time, for the boys' pulmonologist appointment.  Nurse Nancy H drove.  The lift was working kind of iffy, but still working!  We got up to the floor and checked in.  Casey liked that one lady had lots of Red Sox stuff on the wall near her desk.  We waited for quite a while before we 'got taken'.  The boys were very cooperative with the nurse getting their blood pressure taken, sats and heart rate checked.  Everyone admired Casey's Scooby-Doo shirt.

Dr Lahiri thought both boys sounded great, very clear and lots of air movement.  (like they always do!)  We talked about possibly adding 5cm/H20 of Pressure Support to Casey at night time to compensate for his lower Peak Inspiratory Pressures (PIP).  No other changes.  He raved about how great Casey's trach area looks.  Oh, and I did ask him about Casey possibly being pre-pubescent again.  They could examine him and such, but I asked what we would do differently and he said "nothing" (we wouldn't try to stop it) so we're going to leave that alone for a while.  The labs that were drawn will help us know if he's getting adequate nutrition (we wondered about growth spurts and all that)  I also did ask him if he knew of a pyschologist or social worker that was experienced in working with non-speaking kids.  Casey is very sensitive at times and I think his hormones are fluctuating and I'd like to help him deal with that and the emotions of being so physically different than other kids.  He really does seem to have a good self-image.   He almost always says he likes what he sees in the moring after we get him dressed and primped for school. 

For Colin, we mainly discussed his vomiting.   He said we could try Reglan and see if that helps.  After that, maybe we'd do Prilosec again.  None of us could remember why we stopped it in the first place!   I believe he said he would talk to Dr Vane, who did Colin's nissen surgery, and see what he thought.  Several years ago we did a test where they watched his nissen "working" and declared it working perfectly (even though he was showing signs of reflux then).  He also said we could definitely try the nasal pillows and he'll have his nurse write something up for us. 

Then we talked about labs for the boys.  He was willing to do all the tests that I had on my list.  Many of them we had done last year, with a few extra thrown in that Linda LaShure (our nutritionist) requested and that Stephanie Price suggested.  The next part was the tiring part.  We had to WAIT, WAIT, WAIT!  As long as we paced the halls, Colin was happy.  He also made friends with a little girl and kept saying "hello, hello" and waving at her.   Casey became fascinated with the "fish eyes" (I think they are called) that are on the ceiling so people coming around the corner can sneak a peek ahead to make sure they don't run into anyone...So he kept staring at himself in it!

FINALLY, the nurse from the NICU came down.   She's really nice.  She was nervous, but did a great job.  She got Colin's vein in his scalp!  They do a lot of babies that way.  Then it stopped so she had to try his arm.  She got him there first "pick", too!  He cried a few tears but did a great job.  He was very charming, and all the nurses fell in love with him!  Casey was more nonchalant and handled himself very coolly! 

After that we were all tired, cranky and hungry.   Today was the LONGEST ever that the boys went without their formula.  I hope that this one time won't hurt them.  They couldn't care less if they got fed or not, but their bodies would feel it eventually!  We went home right afterwards.  We didn't get to go shopping AND Casey didn't get to go to his afternoon at school!  So, that was our day.

April 27:

I'm kind of grumpy today.  I'm having a hard time keeping up with the boys needs and keeping up on the house stuff, etc.  The house is dusty and messy and we have so many projects that need to be done.  I hate when it feels like it's getting out of hand! 

I almost forgot to go and see Casey driving his chair this AM.  Barb (social worker) and I decided to reschedule our time together today so I was thinking I could put on some sweatpants and get into some cleaning.   Well, all of a sudden it hit me that Pam (PT) and I were supposed to meet at 9:45 this morning. I made it!  It was fun to see Casey driving through the halls.   Pam upped the scan speed so it's quicker for him to turn.  She's also going to have one of the guys come out to program the turns to be slower--but keep the scanning speed quicker.  I think that's what we decided.

~~~~~~~~

We had such a good time while MJ and Brenda were here!  Everything really worked out well.  Our house was pretty accessible for her.  I had been kind of waiting to see how she did as a test to see if we did a good job with renovations.  Casey's room wasn't too easy and she wasn't able to get to the bathroom but that was fine and I expected that.  We could always rearrang Casey's room if we needed.  So far he's easy enough to carry into the bathroom.   Anyway...

Brenda and MJ arrived Wednesday in the afternoon.   They were able to come in and say "hello" to Colin before they had to go right back out again and meet Casey's bus!  Casey seemed very surprised and happy that she was really finally here.  We all just hung out for a while and talked.   Gene ended up cooking (I was planning to, but...) spaghetti, cheese raviolis, garlic bread, and I did make the salad.  We all had a nice time chatting over dinner.

May 25: 

Today the boys had eye appointments.  We made it on time.  We waited for a bit and then we all went in together.  The opthamologist assistant talked to us for a while and did a few tests.  She caught up on Casey's health and learned about Colin.  Then, we saw Dr Hastings.  She did a few things and then put the drops in the boys' eyes.  We sat in the waiting room and read to the boys for about a half an hour while the drops did their dilating thing. 

Casey went first.  We talked about how some people have trouble seeing  red and green.  She told us how we can check for this with Casey.  She looked at the DynaVox and thought that the squares were fine for him to see well, and that the colors of cells were fine.  She said his vision hadn't changed much from last time.  He does have an astigmatism, which we knew.   She also said that he is a bit nearsited but nothing that she would put him or anyone in glasses for.  She said to keep up with the natural tears every night because he doesn't close his eyes tight, and the drops will help protect his cornea.   The drops have also helped with Caesy's sties.  He hasn't had any since we cleared up his last one and kept up with the drops. 

Colin, well, he tried to be good.  I turned his head towards the doctor and boom.  All of a sudden, he wasn't making any noise, his sats started to drop, etc.  We all jumped into action and suctioned, whipped on the bipap, etc. and he was fine.  Dr Hastings seemed a bit surprised at how quickly Colin dropped and how quickly we were able to take action and how quickly he responded to our treatment.  After that, he was fine.  He tracked for her and answered her questions on her chart.  "This is a cake, this is a duck..."   Gradually, the objects would get smaller.  Colin did well.  She said his vision was normal.  If anything, it's harder for him to see detail in things up close, but that's normal for his age-- it gets better as you get older. 

May 28:

May 29:

Colin, Gene and I got up a little bit late today.   Of course, Casey snoozed late as he does every Saturday!   Colin did his morning cartoons and then we got all cleaned up and dressed for the day.  Casey got dressed and watched/listened to some Teddy Ruxpin.  At about 12:15, Casey H. came over to do his community service.  (he is Nurse Sue's son).  I had him dig up the flower bed infront of the yellow room.  I've never had anything in there before.   He dug up the dandylions and turned the soil for me.  HOPEfully, tommorow I will get someplants and flowers put in.  Then, Casey, Casey H and Nurse Sue went over to the diner to watch the Rolling Thunder (motorcycle ride to honor Vets and MIAs) come through.  They saw Daddy ride through on his motorcycle and they waved to him.  Lots of the riders honked and waved at Casey.  Then, Casey and Casey played on the computer.  They played Backyard Baseball (which we had never figured out!), Monster Trucks, and Sponge Bob on the computer.  After he left, Sue, Casey, Colin and I played some board games.   Then, Sue left, and Nancy R came and we played some more.  Then Aunt Chris came and took over.  Now they're watching their new DVD, Stripes.

Gene marinated some steak today and made kabobs on the grill.  Yum, he did green and red peppers and onions and mushrooms.  I made some rice, so we all had a nice supper.

May 30:

Colin wasn't a very good sleeper last night.   UGH. 

Today is Miss Lily's Barnett's 4th Birthday!!!  

"Miss Lily Barnett!! Happy Birthday!! YOU are 4!!! You are beautiful!! You are smart!! You are totally amazing!!! Have a wonderful day celebrating, okay???!! Colin, Casey and I will have a cake and blow out candles to celebrate your big day. Lots of love and hugs, Sue.

PS. I have an image of Nathan, on a cloud in Heaven, laying on his belly with his feet kicking up in the air, surrounded by his Angel friends, pointing down at Lily and saying, 'that's my little sister, isn't she so cute?!'"

June 3: 

Gene took the day off from work today.  He was owed a day, so it seemed like a good one to take.  He did a bunch of stuff around the yard and worked on his bike.  Gene put the glider together for me!  I went out and read for a while, but it got pretty hot.  It's really comfy and big, so I'm sure we'll get a lot of use out of it.

June 4:

We went to the Hot Air Balloon Festival at the Fair Grounds.  BOY, it was hot!  We thought about not going because of the heat, but decided to go, but not arrive too early so that we'd have to walk around in the heat for too long.  So, we took our time getting ready after Nurse Nancy H got here at 4PM.   We lathered the boys up with sun screen and off we went.  New England Medical (NEM) had given us 6 tickets, so we got in free, which was a BIG help since it's about $10 a piece for entry.  We saw Dave Simpson from NEM and chatted with him.  I let him know that I'd be calling him for some chair issues this coming week!  He tried to fix Casey's manual chair brake, but didn't have the correct tool.  Then we putzed around and looked at the sites.  We checked out the booths inside and wandered around outside.  We went over to the fields to look for Jeff's balloon (Aunt Chris' friend) but didn't see it.  They announced that the balloons weren't going to go up for over half an hour so we wandered back to the fair area and found a cool spot to sit and people watch.  I got a fried dough, but we didn't have any other fair food.  Colin and Casey were perfect.  They didn't seem to mind the heat as much as we did!   Finally, we got to see the balloons go up.  It was awesome!   The sky was bright blue with no clouds and dozens of colorful balloons sailing through the sky.  They didn't have Champ this year, but there were lots of new ones.  There was a die-dyed one that I really liked.  We made it out of the fairgrounds relatively easy.  Whew.  We got home about 8PM.  Casey still wanted his tubby so he and Nancy did their thing.  Colin and I went to bed about 9.  He slept really well. 

PS.  Gene put the glider together for me!   I christened it by reading a magazine out there for a while, but it got pretty hot.

June 5:

Another hot day!  We all slept in a little bit.  Colin slept really well.  Colin hasn't been pooping too well, so I've been debating about giving him a Baby Lax.  Gene ended up giving him one because he was just doing little poop buttons and then he started to make the stressed face like he was going to throw up.  We ended up taking out some of his formula and stopping it for a bit.  The Baby Lax did it's job and he seems much better. 

Casey did his Sunday morning routine with Nurse Sue.  He slept until 10, listened to Teddy Ruxpin, and then got ready for the day.   He and Sue went out on our new glider swing and he listened to music and swang and chilled out.  Colin and I didn't do much, but it was fine with him.  I've been trying to work on stretching out his legs so he can get in his stander again.  Pam comes again on Tuesday, so hopefully he'll be ready.

I worked on my afgan for a while.  We watched the Red Sox beat the Angels.  Aunt Chris was relieved.  Then Grandma and Grandpa O'Neill came over.  Gene had marinated some split chicken breasts so he grilled those and we also had brocolli-slaw  La` Me and chips, pickles and Texas Toast.  It got pretty hot in here, but not unbearable.  Glad Gene grilled outside because the oven would have been toooo much.  Grandpa and Gene planted some more in the garden.   I'm washing my hands of the whole thing.  I just don't have the time or energy to deal with such a big garden!  I'm going to keep up with my flower gardens out front and that will be enough for me. 

June 7:

Casey had a physical with Dr DiMichele this afternoon.  I picked him up from school at about 2:15.  We had a nice chat with Dr D.  Casey wasn't too nice, but handled himself okay.  Dr Di Michele held him and weighed him, which we all thought was funny!  They weighed him in at 37 and a half pounds with his shorts and t-shirt on.  Dr D said Casey looked great and seemed to be doing soo well!  One concern is his, um, privates.  His testacles aren't descended.  He could barely find them.  That's a concern for long run---higher risk of testicular cancer.  And, if they are in his abdomen, that could be a bad thing (I really don't get how that is, but that's how the doc described it).   Everything else was good, well, he's concerned about his hip and knee contractures, but that's nothing new.

June 8:

Pretty quiet day today.  Meagan came and worked on the DynaVox with Colin using his toes and the jelly bean switch.  They played Go Fish, as she had programmed in some of the Go Fish cues.  He didn't do it accurately, but was acting a bit weird, so we didn't push him.  He did read his story to Meagan that he and Jennifer wrote. 

Casey has been having good days at school.   Not sure if it's his "behavior/token" program working or he's just happy that they aren't doing too much academics lately.  He's been driving his power chair outside and exploring what he can do.  He's found that the power chair doesn't work too well on gravel or wood chips!

June 9:

Question I posted to the SMA Support message board:  Anyone have any idea why SATs may be lower than normal without being ill? We’ve changed probes, changed toes, etc. Colin, 4-years-old, SMA type 1, has been SATTing lower than his normal 98-100%. He’s been more like 95-97%, sometimes even at 94%. He been acting normal, actually, very happy and feeling good. His heartrate has been a bit lower lately, which should be a good thing, since he’s always been more of a high heartrate guy. We’ve noticed that on and off bipap his SATs are lower and his heartrate has been lower. A month and a half ago his heart rate started coming down a bit and he needed less bipap. We were quite happy about that! I guess, about that same time, we got a different nighttime bipap—the Sullivan VPAP III. The EPAP only goes down to 4, so he’s been on 18/4 at nighttime. We still use the Respironics S/T at 18/2 during the day for his break and pick-me-ups. So that could be one reason? Also, about 3 weeks ago we started using Cytolog with him—once a day, mostly—sometimes 2 when I remember. And, several weeks ago we started using Miracle 2000 as a vitamin/supplement, instead of the other regime we were using of vitamins, calcium, folic acid, B12, etc. The Miracle 2000 has everything in it that we used to give separately plus a bit more things. I haven’t figured out yet how our old supplements correspond to the dose of Miracle 2000
(Bad me ;0) but I’m guessing they’re somewhat close. He’s really, really been doing well, and trying to say more words and wiggling like crazy and happy and bright. Should I stay worried? Oh, and his secretions have been somewhat different. Sometimes he has more clear secretions (allergies? Although he hasn’t been sneezing or having red eyes) and he’s had some champion buggers at times.

June 12: 

Gene left for Laconia and Bike week mid morning today.  It was really hot.  He met Tom K and Peter in Richmond.  They made it down fine.   He said his bike ran really well.  It got pretty hot once they got down more into where all the commotion and biker stuff is. 

June 13:

It's been hotter than heck here.  Yesterday Colin and I holed out in the bedroom with the A/C for most of the day.  Books and movies, etc.  Casey and Sue spent most of the day in his room with the air on doing the same things.  Not much energy ot do much else.  In the afternoon we all hung out in the living room and suffered.  It wasn't TOO bad, but ALMOST!  Casey and Colin got to play lots of computer with Nancy R. 

I just got back from the Vet with Sister.   She had to have an x-ray of her bladder.  She's still peeing out of the box and peeing blood.  Turns out she has some BIG stones.  She's going to have surgery to remove them tomorrow.  Then she'll stay overnight, plus one more night since we're going to be away at camp.  Grandma and Grandpa O'Neill will have to pick her up before 6PM on Thursday, and bring her here.  Then they will have to give her an antibiotic pill on Friday evening.  Saturday, AC will come over and do the duty.   We'll be home on Sunday.  She is turning into an expensive cat--but the other option (to put her down) is not right for her or us.  We have to give her this chance to recover and, then, hopefully live a happy, healthy long life!

June 14:

Sister made it through her surgery fine.   They found 6 stones in her bladder!  Poor kitty!  Her bladder was thickened since she's probably had the stones for a while and it was irritating it.   Busy today packing and such.  Gene came home from Laconia this afternoon!!!   Yay!  I guess it was pretty rainy and one of the guys was heading back so Gene rode back with him.  He was a drowned rat when he got home!  I guess the driving was pretty hairy.  He brought the boys home t-shirts.  He bought himself a really nice new leather jacket for a good price.  I got a necklace and bracelets!

June 15:

WE'RE GOING TO LEAVE FOR CAMP SOON!!!

June 19:

Happy Father's Day, everyone!

WE'RE HOME!!!  We got back home at about 2PM.

Aunt Chris came over with strawberries, poundcake and Ben & Jerry's vanilla ice-cream as a treat for Gene.  Later, Grandma and Grandpa O, Julia, Tim, Tyler and Peggy came over.  We visited for a while.  It was good to see the Ohio residents again.  Julia looked good and so did Tim.  He is HUGE!  They brought Sasha back home to us.  She had a rough time.  Lots of activity going on next door to Grandma and Grandpa's house, and she didn't like Big Tim. 

Camp Inspiration was awesome!  The weather was pretty stinky.  Rain, rain and more rain but we really were able to work around the rain and do everything we wanted to do.  Well, we never did get to swim because we didn't get the results from the crypto test in time.  So that was a disappointment but we did EVERYthing else. 

The ride over to NY was pretty hairy.  It was raining off and on.  We ran into some foggy weather in the Adirondaks somewhere.   It was a curvy, narrow road with no where to pull off.  We (well, Gene) did fine.  Tara, from camp, called us on the cell to see where we were because we were later than we had planned on.  But we made it! 

It was kind of crazy at first, seeing everyone and meeting everyone and seeing new and old faces, and getting the bags and equipment stashed in the Bob Cat Cabin.  They had it set up for Casey and Colin to sleep together in the Bob Cat Cabin.  The room was at the end, next to the room from last year.

They checked in the boys' meds and the put identification bracelets on them!  We went over feeding and med schedules. 

Everyone gathered  for the Meet and Greet.   Casey was pretty excited, I think!  Colin handled himself pretty well, too.   We did some Ice Breakers.  One thing that was cool was the scavenger hunt where you had to find someone with certain characteristics, for instance, someone with a tattoo, red hair, someone from a different state, etc.  Then each camper and his/her team built a race car out of a wooden kit and decorated it.  They set up a ramp for races.  Casey's car was the Santa Cruiser.  They strapped Casey's bendable Santa from his wheel chair onto the car.  They also added Daddy's pocket knife for weight.   Colin's car was called, um, I don't remember But--it was decorated with BLUE marker.  We weren't the out and out winners, but they did pretty well.  Each camper and sibling got special tokens for winning that they could trade in for some prizes.  I can't even remember what the boys picked--they got so many different 'prizes' during our stay!  I think Colin may have picked his big, blue doggie and Casey may have picked a Goosebumps chapter book.

June 22: 

Colin had a pretty tame day at TV school today.   The kids just watched some movies.  We put a DVD on the portable for Colin.   Heather was here and we just played it low-key.  Everyone said good-bye!   Claire (OT) came to work on Colin's hand splint switch holder.  We got it pretty good.  She's thinking of making a totally new one, that is smaller and less cumbersome.  One of these days we'll get it right!

We had our first family sleepover in the Wish Room.  Nurse Terry is on vacation.  So, Colin and I slept in one of the bunks and Casey slept in the other, and Gene slept on one of the boys' matresses on the floor.   It all worked out pretty well.  Gene ended up putting a hook in the ceiling to hang a string to vent Colin's tube.  The bipap and humidifier and all were on the Art Cabinet.  Casey had his IV pole and his Vent stand, so it really was pretty easy.  

June 23:

**AHHRG, Casey has an ear infection and pink eye!  We've been noticing that he's been tearing a lot and having more discharge in the morning, despite using eyedrops at night.  We called this morning and they got him right in.  Nurse Julie brought him by herself since I had no nurse for Collie.  He's been pretty quiet all day.  He spent some time hanging out in his room listening to a couple of the Magic Tree House series books on CD.  He was very content doing this!  Julie gave him a tub bath and they had fun playing. 

Today is Gilly's 1st Angel Day.  We hadn't seen Gilly in person since May of 2003, but she's always been very special to us.  We met her, and Tine and Rex when Gilly was just a little baby at Dr Bach's conference.   Gilly always had the biggest, brightest smile on her face! 

June 24:

Sue D just came and swapped vents, so we have Casey's original LTV-900 back.  Yay!  Randy, from Keene, also came and did an oxygen tank check.  I ended up giving him back two 'E' tanks because we almost NEVER use any oxygen.  We still have plenty for emergencies. 

Casey's had some really super thick secretions today.  Maybe his ear infection is draining??

Colin had a crappie night.  Lots of fussing and wanting to be flipped, and a bit higher heart rate.  We checked his ears today and they looked 'okay'.  One looked a bit red but it was hard to tell.  I tried calling MouseTrap but the Milton office was CLOSED!!!  GRR!  So, we'll hope for the best.

June 25:

The SMA Community mourns the loss of baby Montanna, from Australia.  She was 10 months and three weeks old. 

Colin slept pretty well last night.  He woke up at one point and cried but fell back to sleep shortly afterwards.

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