The O'Neill Family Journal!

June 17, 2004 through October 27, 2004

June 17:

Today was Casey's last day of school.  He brought in his gifts for his teachers today.  He had a card and a bracelet for his buddy, Samantha.  Casey got to meet Mrs. Gage who will be his Second Grade teacher.   She is very excited to have him in her class!  She gave him a shiny notebook to write down things that he does over the summer. 

July 15:

Please send us prayers for an uneventful day tomorrow.  Casey is getting a flexible bronchoscopy.  It's his first ever.   The docs just want to see how he's doing in there and see if he has any scar tissue and just to make sure all looks well.  I hope they can tell if he needs to go up in trach size.  We're having our two favorite docs do it (PICU doc and pulmonologist).  It should be a quick, easy thing...he does need an IV and will be sedated so that part is scary to me.  Afterwards we plan on making a quick stop to Barnes and Nobles to pick up a few Boxcar children books, Casey's new favorite!

July 16:

We had a smoooth time at Casey's appointment!  Thanks for the thoughts and prayers.  Poor Casey had to get up at about 5:15 AM to be ready to leave the house at 6:30.  We actually made it out by 6:35.  Checked in and got to the floor.  We had his vitals done and weighed him.  They put Emla cream on his hands and feet and let it sit for about an hour.  Casey had fun torturing Nurse Nancy and I by yelling at the TV because we couldn't find any good shows! 

The nurse came in to place his IV.  She was really good.  She was a NICU nurse so she knows little veins.  She missed one hand, so she tried his foot and got it.  Then we had a bit to wait.  Transport got him and we wheeled down.  They were soooo good down there.  Anesthesia gave him a bit of lydocaine and then propraphol to put him out.  The docs let Nancy and I stay in the room and watch.  It was really  cool.  They went right down his trach with the camera thing.  It showed up on the TV.  His trach is PERFECT!!!   NO scar tissue, NO granulation tissue, no weird anything!!!  It was dry, too, in a good way they said.  They could see three separate septums (I think).  One in a little smooshed from laying on his side a lot, but everything looked really clear.   They said they'd never seen such a beautiful site!!  They didn't recommend going up in trach size or changing any settings.  After the procedure, he woke right up and was feeling great!  We went up to the room for a few minutes and did another set of vitals and then we were free to go.

We went and visited the PICU and saw some of Casey's nurses and RTs from his earlier stays. 

Then we went to Aunt Chris's to water her plants.

Then we went to Barnes & Noble and checked out lots of books.  Casey got 3 Boxcar Children and 3 Magic Tree house books.  I picked up a treasury for Colin, 365 Stories & Rhymes for Boys. 

July 23:

I don't have the words or strength to write...I am taking Monica's words...

Our sweet, beautiful, brave Taleah earned her angel wings this evening.

I can't yet make myself really believe it.  She was strong and healthy with no sign of problems.  Somehow, her monitor got turned off and bipap got bumped and unplugged.  We figure she aspirated and went very, very quickly.

She passed quietly without even  disturbing any of her siblings who were all in the living room watching Little Mermaid with her.

When John checked on her she had already flown.

We are heartbroken beyond words, beyond expression.  We held her and held her and loved her.  I ran my fingers through her hair for hours as different family members arrived to say goodbye.

Her fourth birthday is day after tomorrow, she would have been four.

We are planning on having her funeral on Monday, we don't know where yet.  I would really like a funeral outdoors for her.   

The house seems so empty, so quiet.

Monica

Taleah Louise English July 24, 2000 - July 22, 2004

This will always be my favorite picture of Tia!

July 25:

I guess I don't get out a lot.  And, when I do, I am usually with the boys or at least someone.  Today I met my sister at her condo to go shopping.  Gene had both boys.  We had a nice time shopping and then went out to lunch at '99'.  I was cruising the interstate on the way home, listening to the radio, winding down--finally.  I can't remember the last time I really let go and relaxed.  Well, it felt GOOD!  I forget what the open road can do for my soul!!  Then, I started hearing melancholy songs like Creed's Arms Wide Open and Sarah McLaughlin's Angel and Natalie Merchant's "oh, I forget the name...but I'll bet you all know which one I mean...Through all this I started bawling...sad kind of bawling but also very freeing.  THEN, the kicker..."Tiny Dancer" by Elton John, which is Mia's song.  I freaked.  THESE ARE ALL songs I associate with SMA and they were all in a row!  I was so wound up I called Kim on my cell.  I had to go past my exit because my eyes were all red and I didn't want to face Gene and my in-laws with a blotchy face.  Anyway, I feel better but still raw.  Not sure why I shared all this!

August 26:

Poor buddy was fussing in the night.   When I went to flip him he was burning up.  His heart rate wasn't lower than the 120 all night long--usually he is in the high 60s to 90s.

He made it downstairs without bipap and did fine with his coughing.  He had more secretions, but nothing yucky.  He needed his bipap after that as his heart rate was way high.  His oxygen levels don't seem to be affected; maybe 1 point lower.  His lungs are clear, so I suspect a head cold kind of thing, but it's still scary!

I was supposed to spend the day with my dad, shopping and then on a charter sailboat on Lake Champlain for a couple of hours.  But I'm staying home.   My parents are up for another couple of weeks so hopefully we can have our sail.

Oh, and he's very, very gassy.  But has done extra well with his poops the last couple of days!

Later on August 26:

Colin has an ear infection!  Poor buddy!   He hung in pretty well all day...Tylenol and bipap.  I
checked his ears and sure enough, his right ear looked red and moist.
After nap when he woke he looked awful!  HOT and flushed and
glassy-eyed!  I took his temp and it was 101.0 axillary!!  He got some
Motrin and we sponge-bathed him and he cooled down very quickly.  The
doc just came by and he diagnosed an ear infection--not just the
swimmer's ear kind, but the full-blown yucky kind.  So he'll be
getting amoxycillan.  Good thing I just stocked up on acidophilus!
He's been off bipap for almost an hour and doing fine.  SATs are 100%
and heart rate 129.  He's going back on in a few.  Thanks for the
thoughts and prayers!!

August 28:

Happy Birthday in Heaven,Sidney!

September 7:

Wow, what a day we had--in a GOOD way.  We had our last "hurrah" of summer yesterday by going to our local fair.  It's the biggest fair in the state, and in the town nearby where Gene grew up.  Anyway, this was Colin's first fair year.  I was nervous, but I knew Colin would love it despite the dirt and germs and noise.

We had Nurse Julie with us (thank you Bill for the passes!) and Aunt Chris, and Nurse Sue met us there because she hadn't had a chance to go yet.   It's pretty overwhelming but the attractions are usually in the same place so we navigated fine.  First stop was the animals.  Both boys get excited to feed the goats and sheep.  Poor Colin had a shock when a goat stepped on his head!!   Luckily he was wearing a hat so the hat got poop on it and not his hair!

We strolled around enjoying the sites and couldn't wait very long before we had to get some sausage, onions and peppers and fries.

Then we went to where the rides were.  We decided to do the carousel first.  We waited and got all set and then the attendant stopped us and said we couldn't go because of the machines and such.  SOOO, Gene had to go to the fair office and the lady came out and we had to sign some paper and together we picked the rides we wanted to try with the boys.  She gave us some passes because she knew we had to ride with the boys and didn't want us to use up the tickets for ourselves.  I went on with Colin and Julie went on with Casey.  Well, let me tell you, that ride went fast!!!  I immediately felt NAUSEOUS!!  Colin wanted to like it but I sensed he felt the same thing!  He'd smile and smile and then get a funny look on his face.  Casey and Julie stayed on a second time, but not us!  I felt sick for about 3 hours afterwards.  Not even homemade maple walnut ice-cream or a cherry snow cone helped my stomach!

Anyway, I could go on and on.  Let's just say it was a good day.  I'm disappointed in our pictures.  Aunt Chris totally missed the cars we were sitting on (that shows you how fast we were going!) and somehow the pictures I took of Gene and Colin on the train didn't come out.  Oh well.  Enjoy.  It was very chilly in the AM as you can see Colin in his jean jacket.  By the end of the day we were all hot.  Casey has us put on his shorts and Colin ended up sunburn that shows his bipap cap strap!!  (I did keep Colin on his bipap more than he needed.   I was hoping that way he wouldn't be breathing in as much dust and grime).  We used just about a whole bottle of Purell and lots of antibacterial wipes--and we're known as the "dirty" family!!  Karen, I just can't quite picture you there with your boys!!

September 14:

Colin got his hound dog adjustable knee sleeve made by Cascade today.  We only ordered one, to make sure we like it, and then we'll order a second one.  They are Very adjustable in length and how loose/tight they fit.  And, they are cute!!

September 21:

Well, we had quite the day today.   You'll probably think we're nuts, but we brought Colin to preschool today!  It was picture day so we decided to go for pictures and then hang out for a bit.  Gene, Colin and I went to Open House a couple of weeks ago and met some of the kids and the families.

Well, pictures were disastrous!!   He did okay for a while but was pretty overwhelmed with all the kids and commotion.   There were 3 preschool classes there all at once, some with families and siblings!   Then, when it was his time, he bawled!  No one could make him smile or even stop crying!  So, we'll have some bawl-baby pictures!  Then, we put his bipap on while we went back to the preschool room.  Bawl, bawl, bawl.  Then, I put headphones on him to listen to a story and he calmed down.  He and another boy listened and had a nice time.

Then he was ready for action.   We played Legos, did puzzles, did some crafts, and all sorts of stuff.  The kids were very interested in him and his kart.  Of course, the girls were all over him.  He got a spontaneous kiss from Ellie.  I almost freaked, but held it in.   Then we had circle time and I held him and helped him with some of the finger play.   Then one of the little girls helped him stomp his feet while they went on a bear hunt.  He really didn't want to go!  He went "wah" (fake) which means he's not wanting to stop something.

We saw Casey for a minute.  He did NOT want a kiss from me!!

Now, he has his special ed teacher here and they're doing some more work.   He's using his microlight switch with a Scanning Cheap Talk to tell Meagan when to turn the page.  (The first 3 squares are blank and he's supposed to wait until it gets to the 4th one which is a challenge because he loves to click, click, click.)

September 23:

This afternoon we sent off two balloons for Gilly's 3rd birthday.  One had lots of pretty flowers on it and the other was Mickey and Minnie because that's what Colin wanted her to have!  Attached was an SMA Support brochure that I wrote in "In Memory Of Gilly Powell" on.  The balloons got caught in one of our big trees and I like to think that Gilly was there with those balloons watching us and didn't quite want to bring them up to heaven yet!  Love you, Gilly!

September 28:

Thursday night he was fussy and then had cold symptoms all weekend...lots of secretions, coughing, etc.  He's been on bipap just about the whole weekend, and yesterday, too.  The doc was supposed to stop by after work yesterday, but forgot.  This morning his lungs started sounding wet and yucky.  I wasn't too worried until this AM as he had been maintaining his sats fine, and could come off bipap and be fine--he'd just want it back on.  All morning he sounded wetter and wetter and now the doc thinks he has some type of walking pneumonia.   He's ordered Biaxin.  We're doing lots of moving him around and trying to do CPT (he hates it) and doing the cough machine more, etc.  He's been very stuffy in his nose and the Advil Cold medicine seems to be helping a lot. 

Better go pick up the medicine.  We have a Nurse here for him every day this week (not yesterday) so that's helpful.  I've been going crazy washing masks and headgear, suction stuff and face cloths.

So far Casey is fine.  We'll be keeping them apart, for sure!

Please send him prayers!!!

I am so proud of my big boy!

Last week Casey was being very vocal during morning meeting.  Casey is non-speaking, but not non-verbal!!  He's been better about being quiet at the appropriate times, so the nurse was trying to figure out what was wrong.  She finally got out of him that he wanted to contribute to the conversation.  They were talking about friendships.  She kept asking him questions and finally she got out of him that he wanted to tell the class about his friend MJ!!  Nancy and Casey told them a bit about her.  Then, on Monday, he had to "share" about something/someone special to him.  He picked MJ.    He and I sat down and this is what we came up with.

"I have a friend named MJ.  She lives in NY so we don't get to see each other a lot, but when we do we have lots of fun!  MJ is 16 and is very smart.  She has written stories that have been in magazines!  She has also designed a beanie baby that will be sold to help raise money for SMA.  She has SMA also.  She sends me cards and I like to send her some of the papers I did in school.   Sometimes we talk on the phone.  I'm very glad that MJ is my friend!"

His CF (communication facilitator) put it on his step by step communicator, sentence by sentence and he read it perfectly!!  We also had 4 framed photos of MJ and MJ and Casey and one big one of the whole crew this spring in Mass.   The class really enjoyed hearing about his friend and thought she was pretty special!!

September 29:

Well, Colin has had some rough moments.  Last night Gene almost called 911.  We were putting the boys to bed, taking turns being with them, and when Gene was with Colin he got really chokey and stopped breathing for a second.  Gene had to run down and get the cough machine and his sats came up but his heart rate skyrocketed.  We ended up bleeding a half a liter of oxygen through his bipap to help him catch his breath.  I played with the bipap settings and added some extra breaths and he FINally settled down after about an hour and a half.

October 1: 

Gene had a nice birthday.   Pretty low-key but that was fine with us!  I made a cake with a box mix that Gene picked out.  (Thrilling, I know, but it's been crazy around here!)  Colin made Daddy a frame with his picture out of Popsicle sticks and bead and buttons.   Casey and I took an old Altoids box, modpodged a photo on the top, and glued felt on the bottom!!

October 9:

I've had a baaad back for a few days so I almost sent the crew out to Applefest without me, but I made it and felt better as I walked around.  I forgot my camera because I was busy ordering Gene around, making sure he put all the stuff on the boys chairs properly and that kind of stuff.  I'm used to doing it myself!  (Not that Gene isn't a big help all the time, there's just certain things that we each do and he had to do most of both our tasks today)

Casey is a pro at events like Applefest!  Colin was very good, too.  He wasn't nervous around the people at all and he loved the commotion.  We found him a red Power Ranger figure.  Casey and I were looking through some books and the woman gave Casey a tye-dyed beanie baby bear named Sammy and she said she named him after Sammy Sosa.  I found some muppet baby books for Colin and I for our bedtime routine.

Colin decided he wanted to ride a pony.  So, Gene put him up kind of side saddle, laying down sortof and he loved it!  He was BEAMING!!   Then, somehow, we lost Casey and Terry and when we found them they were all cracking up!  I guess they went over to pet the donkey and the donkey put his head over the fence and grabbed Casey's Sammy Sosa bear right out of his lap!   Then the donkey dropped it on the ground.  Terry went right under the fence and grabbed Sammy back!  He was a mess!  (When we got home, I cleaned him up well and he looks good as new)  We walked the entire street and went into the school and checked out the crafts.  We enjoyed some hotdogs and fresh, hot apple crisp with ice-cream.  Oh, we saw lots and lots of dogs.  Casey and Colin loved the New Foundland who was sooo gentle.  And, we loved the bulldog baby.  We all got lots of dog slobber on us.

On the tractor ride back to the parking field we had some gentlemen with a drum, tuba, trombone, trumpet and a clarinet, playing tunes for us!  It was a good day!

October 21:

LOOOONNNNGGGGG O'Neill update...

I’ll start with Casey.  Casey is having a phenomenal year in 2^nd grade!!!  I am so proud of him.  I guess we got a lot of the hard transitioning done last year from Kindergarten to 1^st grade because he had a smooth time fitting into 2^nd grade.  There are 22 kids in his class, which I’m not crazy about, but that’s just the way it is.  He has made some new friends and likes hanging out with boys this year as well as the girls.  The girls still LOVE him, but the boys think he’s pretty cool and like to do math with him and help him with his DynaVox and hang out with him while he practices his power chair. 

As he did has had previous years, Casey has one of our home nurses go on the bus with him and stay with him all day long.  He also has a Communication Facilitator (CF) with him all day except for lunch/break time.  He has two main CFs and one that does a language segment with him.  The CFs go through a special training and have on-going training as well.  They also know how to use and program his DynaVox communication device.   I just got Casey’s 1^st Progress Report from his Special Ed teacher.  He is doing sooo well!  He has met all his benchmarks for September and gone way past where we expected him to be at this point in the school year.  For example:   1 Goal is Making Requests and Choices.   After vocalizing to gain an adult’s attention, Casey will use eye point to indicate his needs by choosing from up to 6 consistent symbols (repositioning, leave me alone, I’m finished, I don’t understand, none of these, change pants,) according to the following criteria…blah, blah, blah.  Well, he used to have a hard time doing this appropriately (some of it was US, I’m sure) but he’s making 98% Pragmatic matches on a daily basis!   These CFs are so good and have really learned him well.  Last year, for various reasons, he had several aides and partial CFs. 

He LOVEs art this year and has a wonderful teacher.  She’s been in the district FORever and somehow she and Casey have clicked.  Casey and his CF and nurse go to art early and check out what is going on for the day and the teacher helps adapt the project for him.  She has capitalized on his finger movement and he’s brought home some beautiful art projects with him just using his thumbs!!

He’s learning his power chair pretty well.  He’s definitely not ready for crowds, but he’s getting better about stopping and turning.  It is a very powerful thing for him to be moving himself through space.  He NEVER has had that until this power chair so it’s got to be weird for him to be a bit independent in where he can move. 

We go to the Pulmonologist and the Orthopedist next week.  Pulmonologist is just for our bi-yearly check in.  Ortho is post surgery check up.  We’re concerned about his shifting curve.  He had spinal fusion a year almost a year and a half ago.  He only had the back done and it seems like his back is changing shape.   Not good

Casey is still a baseball fan.  He loves both the Red Sox and the Yankees.  He thinks Johnny Damon is cool and he adores Derek Jeter so he decided to wait and see who won the pennant to choose who he’d be for Halloween.  So, he’ll be Johnny this year!  We went on an outing to the Halloween Store yesterday and bought him a wig and beard for his Johnny costume!

Casey still loves his Box Car Children’s series.   We’ve also taken to reading The Magic Tree House series and Ghostville Elementary series.  I snuggle in his bed with him and we read a chapter or two each night. 

Colin is doing pretty well.  I still don’t think he’s quite back to baseline since his pneumonia.  It’s been about a month since he started with his colds, which lead to a slight pneumonia.  He’s been really, really spitty—just slowing down, now.  He’s almost back to his “normal” bipap regime. 

School-wise, we have exciting news!  I don’t think I told many people about how Colin is getting the school experience.  We have an ISDN line set up and Colin “attends” pre-school via video conferencing!   The school was already setup to do this as they had a teenager last year receiving chemo that was home bound.  So she had the same kind of setup that Colin does now.  We started planning this way back in the spring and everything finally came together just in time for the start of school.  The ISDN line is expensive but it’s being covered by a grant right now.  I’m going to be looking into getting a grant to continue it or find some other funding. 

Every Tuesday and Thursday morning we get all set up and wait for the school to dial us up.  The kids are getting settled for Circle Time.  I usually hold him in my lap and sing the songs and do the finger/hand plays with him.  He loves it!  He anxiously waits for the dial up sound and stares at the monitor waiting!  Then, the classroom teacher places their camera so we can see one of the areas of the classroom.  We usually try to mimic what they are doing as much as we can.  We’ve played with blocks with them, played with Play Dough, painted, played at a Farmer’s Market, shaved and washed pumpkins—you name it!  The teacher tries to tell us a week ahead of time what they’ll have in each station so we can plan.  The kids love to talk to Colin on the TV.  They have a huge photo of Colin that they laminated and put it on the ground, like a mat, so the kids know where to stand so Colin can see them best.  We have photos of all the kids (there are only 8) so we can talk about them after class, too.  We make picture for his friends and they send him home pictures also!  Casey is “responsible” for bringing in Colin’s folder each Tuesday and Thursday and bringing it back home with the “What we did in class” paper and any other handouts. 

 And, Colin has his Special Ed teacher coming once a week to do special projects with him.  He has his Intensive Special Ed teacher coming once a week to work on his DynaVox (yes, he recently got one), and he has his Speech teacher coming once a week to keep us on track with Oral Motor stuff as well as DynaVox and articulation.  And, he has his home based PT who helps us with the stander, KidKart, power chair, splints, braces, etc.  And, he has a home based OT as well as a consulting PT and OT from school.  So, we are busy!  He has a day nurse Tuesday through Friday.  Mondays he and I spend together relaxing getting ready for the busy week ahead. 

He’s at his highest weight ever—24 pounds 6 ounces.  He looks really good to me weight-wise.  He’s wearing mostly 3T clothes and some 4Ts (which are a bit big, but they were Casey’s and I love to see him wearing Casey’s clothes!) and sometimes 2Ts

He goes to the pulmonologist and orthopedist next week as well.  He’s definitely got a scoliosis going on, but I just don’t know what we can do about it.  He has his TLSO that he wears when he’s upright (which really isn’t that often) and we’re careful about positioning.  His scoliosis isn’t quite as severe as Casey’s was at his age so I’m hoping we can hold off on surgery for many years to come!

Sasha.  Yes, Aunt Me-Me, we still do have our Rottie.  She’s doing fine.  She’s not the companion to the boys like we hoped she’d be, but she doesn’t step on them anymore.  She is totally “Daddy’s Doggie.”  She worships Gene and is very sad when he goes to work.  Everyone else is just a pale comparison to him, apparently!

Sister, the cat, is fine, too.  She has taken to sneaking outside A LOT.  We don’t like her to do that, but sometimes it’s inevitable.  She caught and ate (I know, I know) a mouse in the house the other day.  GROSS. 

Gene is doing okay.   He just went back to Dartmouth Hitchcock for a follow up “dizzy” appointment.  They did all the same tests and put him on that weird machine again and he tested a bit better.  He has different exercises to do that, hopefully, won’t make him nauseous.  Gene really believes that cutting out aspartame has helped him have less severe dizzy spells and have them less often.  Work has been going okay.  Always rumors about cutbacks and layoffs, but what can we do.  Gene is thrilled because we just had our electrician guy hook up electricity to our new garage.  And, he’s installed a panel so we have more breakers and he will have a separate one for Colin’s new room (his Make-A-Wish room will be getting started in November) and we can hook up the generator to that room so we could basically live out there if we needed to.  It’s not like a whole house generator but it will do!Me, I’m fine.  Feeling like I need some exercise and to lose some weight but when is that going to happen?  I don’t know.  Sometimes I can’t even find time to brush my teeth and floss my teeth.  My legs have not been shaved since August!  (Okay, so you probably didn’t need to know that!)  My parents gave me their “old” Camry 4-door, so I have a nice reliable car now.  Gene tends to like clunkers (and that’s pretty much what we can afford!)  I love the new Big Lots near us.  I could spend a whole day there.  Last week I got my eyes checked for the first time in about 5 years.  I’m looking forward to being able to read the small print on vitamin bottles again.  I guess I need reading glasses!  ~~Another one of those things that hits you after you turn 40.  I still love my Survivor on Thursday nights.  One of these days I’ll stay up for CSI but I just can’t seem to!  I love my Clean Sweep, In a Fix and While You Were Out re-runs.  And, of course, Dr Phil rocks!!!  I still always find the time to read at night.  I can’t seem to stay awake during a TV program past 9 o’clock, but put a good book in my hand and I can stay up until Midnight, REALLY!

Colin and I read Harold and the Purple Crayon every night.  I hold up different books and he says, “no, no, no, no” until I hold up Harold and then he says, “UH-HUH!”  He and I have a routine where I leave out certain words and he fills them in.  He says moon, balloon, bed, sleep, red, all on cue!

Oh, I forgot!!   Colin did go to ONE day of pre-school.   It was a Tuesday and they were having picture day.  We decided to go for it.  NOT a good idea.   He hated the people all in the room waiting for pictures.  He cried.  We got back to the classroom and he calmed down and enjoyed himself.  Of course, the boy who likes him best is infamously known for his secretions…Thursday night I noticed he had increased secretions and higher heartrate and in the next day he came down with a full blown illness so no more pre-school until after, WAY after, the germy season

So, that’s the O’Neill update in a very large nutshell!

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