The O'Neill Family Journal!

October 26, 2004 to Present

October 26:

I thought it was going to be one of those days when I thought Colin's battery wasn't charged and then it worked...  I thought it was dead but something was not working...then, one of Casey's tie-downs came right out of the slot, our lift sound like it's crunching metal, we were late, etc.  But all went well after that.

We had an uneventful visit with our pulmonologist.   Not much to report.  No changes for Casey.   He thought he looked great, lungs sounded amazing, etc.  No changes for Colin.   Same thing-looks great, great lung sounds and air movement.  So we don't go back for 6 months!  Yay!  I'm very glad about that since our pulmonologist doesn't think he's going to get to get a flu shot and he's going to be having to treat his patients who have influenza.  So we're staying AWAY!

I did ask him about giving our kids cough suppressants.  Amy and I have talked about it and wondered why they always tell us NOT to give our kids suppressants when they don't even have a productive cough so why would it matter????  First, even if it's going through a g-tube it does act on the body to suppress the cough (we had always wondered about that since we thought that the coating of the throat was what helped stop the coughing).  Second, it tells the body systemically to not cough.  So, then the lungs won't move the "gunk" around and even if our kids can't get the "gunk" out with a cough, the body is still making efforts and it's moving the "gunk" which is better than it being static and getting stuck in there.  Does this make sense???  He did say that if rest is needed, especially at night, then give the cough medicine to get some restful sleep and "go after" the gunk after everyone is rested!!!

October 28:

This morning we had appointments at ortho clinic.  We had a resident doc that we talked to first who was really cool and knowledgeable.  (Cute, too!) 

Lora--I asked about Casey's growth plates.   He said it's a relatively new procedure and that they're still perfecting it???   So, I imagine that Casey's are not "removed".  It's a long story, but we didn't get to view Casey's x-rays--even after getting them done before-hand!!   So, we looked at old ones and explained how we thought things have changed, etc.   Dr. Aaronssen is going to call me next week after he views them and I'll ask more about the growth plates and the crank shafting and all.  We'll make a plan after he sees the films.

We looked at Colin on his side and then on his belly.  He said he is really flexible and that his curve really is reduced when he's on his belly.  He really doesn't think it has changed in the last 6 months--looking at him this way.  We will go back in 6 months with new x-rays.  He thought he looked good and was pleased that he's standing in his stander.

So, uneventful.

Then we went to our pediatrician's office (during their lunch) and the boys got their flu shots.  We just whipped down their pants while they were still in their chairs and, voila, they were done in a snap!!  Colin went "wah" for one second.  Casey just shut his eyes tight and didn't make a peep.  Poor Collie got a Barbie Band-Aid and Casey got a ScoobyDoo one.

Then we dropped Casey off at school so he could catch music class and practice his power chair.

Colin did NOT nap.  We tried, but he just wanted "book, book, book."

Then he had Speech.  He and Tami worked on his DynaVox, choosing activities.  So we were a blur of reading books, watching TV (for a minute at a time), playing house, playing with toy cars, etc.

Then Casey came home and we needed to work on his family puzzle piece.  We added some photos and stickers and words.  Then he had to put a Scooby Doo sticker with "Casey" on them, on 22 packages of Halloween treats for his classmates.  I found little packages with crayons, sharpener, stickers and a little pad all Halloweeny for 37 cents each!

Now it's shower time for Casey, pjs for Colin and get ready for Survivor time for me!

October 29:

I decided to take advantage of the early voting option.  All I had to do was go to the Town Clerk's office, get verified, and they sat me down with all the paperwork.  SO nice to not have to stand there and rush and hear all the people around you, and get distracted.

And, Gene (who NEVER gets sick), has a cold and sure enough, this AM I felt the nose start dripping and all that.  I found Airborne, lemon-lime, at our Brooks Pharmacy.  I'm drinking it now.  I'm not a fan of effervescent cold remedies but I am choking this down.   And, you're supposed to do it every 3 hours!!!  They didn't have the JR formula, but they say you can give children 1/2 a dose.  I don't think I'll do it until I see how I react to it.

later the same day....wow, I feel better!   I've take two doses of Airborne so far!  It kind of gave me a little "buzz".  Definitely cleared up my nose and I feel way better!

November 16:

Casey seems to have a cold right now.  Please send him some prayers to get over it quickly!  He's been spittier (way more oral, nasal and tracheal secretions) but acting fine.  This morning was iffy as to whether he should go to school or not, but they had a field trip planned so we decided to try.   The nurse brought the cough assist to school (but not to the field trip).

Well, he did pretty okay, but then got really junky and chokey about 20 minutes into the Beauty and the Beast performance.  So they (nurse and communication facilitator) brought him into the lobby and trach suctioned him and got him all "fixed up".  They tried to go back in but he was being way too noisy and he just wasn't into it.  I was a little worried that he wouldn't like it as he HATED the performance of The Lion King at Disney World last year.  I guess he's not into huge puppets and costumes and all that!  So when they got back to school, they called and Casey wanted to go home.

When he got home, we cleared him out, tucked him in bed, and I read him two chapters from the book we're reading.  He said he didn't want to nap, so I said we could just rest together all snuggled up.  He was asleep 1 and a half minutes later!!   He slept for about an hour and a half.  We decided to "baby" him and let him do whatever he wanted.  He wanted to play the computer in bed.  So he and Nurse Nancy H are out there now playing Shrek 2.   He's acting fine--his silly self, but is very spitty.  He'll probably be staying home tomorrow.  Colin and I will be staying away from him as much as we can!

November18:

Sad news: From Kristin Webb:

"Cole joined the other angels in heaven this morning at 1:26 am.   He went
peacefully and there was nothing we could do to prevent it. 
Kristin, Dan and Cole forever 27 months"

Please visit his web site to see all of his precious photos and to read the family journal...

Cole Daniel Webb

and, MJ made another site to honor Cole, and for people to leave their thoughts to

Kristin and Dan

Mr. Cole's Page

November 21:

Thank you, Peggy, Steve, RJ and Tyler for helping Gene move the rest of the stuff out of the garage.  We couldn't have done it without you!  Whew.  Glad that's done!  The guys will be starting Colin's room in the AM!

November 22:

The guys are here to start Colin's Make-A-Wish "swinging" room!!   The time is finally here!!!  I had been hoping that it would be completed by Fall, but you know how that goes!  It should be done by the new year.  We're going to have two swings--a Sky chair and a two-person glider.  We'll have them hanging from the ceiling on hardware that we can make go up and down (so we can get them out of the way to have more space when we're not using them).  We'll have a platform with two twin beds in an "L" shape to hang out on.  Of course, we'll have a TV, DVD and VCR that we can view from the platform.  I also want to put a roll up computer/craft desk that will have changeable heights.  They're also going to put up a shelf all around the top of the room so the boys can run a train track around!  We'll have lots of lighting and a separate heat source and lots of place for toys/books, etc,I hope!!  Here's a photo of the area (it was Gene's attached garage...that's why we built the big one so he could put all of his junk somewhere). 

We also had our candles lit today for Cole. 

I guess it's been a LONG time since an update.   I'll just start from where we are now.

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