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Hey everyone,
Happy New Year!
To continue reading about the adventures of the O'Neill Boys, please visit:

http://oneillboys.blogspot.com/

I'll now be using Blogger instead of Live Journal.

Make sure to bookmark our new page and visit often!  One of my New Year's Resolutions is to blog about the boys more consistently than I have in 2009.

<3

whew!

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We had a busy weekend and I'm pooped out! 

Saturday we went to the Christmas Extravaganza at Essex Alliance Church...to be continued.  I'm too tired!

St. Mike's Holiday Party

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I think this was the 6th or 7th year we've been to the alumni party at St. Michael's.  I wonder if the boys will ever be too old to go?  I think Casey was probably one of the oldest kids there and the oldest to get his picture taken with Santa :)   Casey was 'tolerable' of everything.  He's not into the crafts so he likes to wander and snoop around.  At one point, Colin and I went looking for Nancy and Casey and we found them in the first place we looked--the gift shop!  It's a really nice store--I could have bought a bunch of stuff.  I should have bought one of the St. Mike's ornaments but since it was a glass ball, I figured the cats would destroy it.  

Santa remembered us, of course.  He's such a cool guy and is very gentle and I'm sure he would have loved to spend more time with the boys talking with them.  Each Santa visitor got a little white Santa bear and a candy cane. 

We took a few pictures at 'the' tree.  See above.  I didn't get good ones from my Panasonic because I was rushing and didn't get to change modes/flash...so they came out funny.  Glad I had the Canon that Peggy gave me as the pics come out so clean and crisp and the colors are great! 

.................

I feel so behind on all things Christmas this year.  Usually I have most of my cards written out, photo calendars almost completed and ready to send to Kodak.  Usually I have all our gifts sorted out and written down, etc.  Not this year!  We did follow tradition and Gene got a tree after the party and we put it up.  No lights or decoration yet, but that will come. 

Annual cookie exchange coming up next weekend, as well as the Christmas Extravaganza at Essex Alliance.  Colin is supposed to go to school on Thursday.  Casey is going to a holiday party in Richmond with the high school crew...My mind is fuddled so that's all for now!

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cure sma
For some weird reason, I was motivated to make 3 things today.  Gene planned on making deviled eggs, but the shells didn't come off nicely so I kindly offered to make egg salad.  Yum.  Some mayo, salt, paprika and celery.  Then, since I had the celery out, I decided to make ants on a log for Gene.  I prefer my logs without ants, so I made a couple of those, too.  This afternoon I finally had the umph to make Frost on the Pumpkin.  If you go to this blogs tags you can find the recipe.  It's pretty straightforward to make but it takes a long time to bake and cool.  STILL waiting for it to cool enough to flip it and put the frosting on!

It was very nice to have the extra hour of sleep back.  We all felt a little off today but I'm sure we'll get used to it in time.

Once again Casey was a perfect sleeper and Colin was a fusser.  Moxie tolerated my getting up and down a hundred times and snuggled for most of the night.

Colin had a shower with Dada.  I removed his Frankenstein black nail polish and he insisted I put blue on.  Yes, he's an odd duck! 

Here's a funny.  On Friday, Colin was giving Priscilla a hard time and was not paying attention and kept asking for bipap when he didn't need it and carrying on.  She told him that he had to finish his work and that if he kept being distracted she'd take off the nail polish on one of his nails.  Well, he still fussed and asked for bipap so she used remover on one pinky.  After that--he was perfect!  Ha ha!

Nancy was here for the day.  Casey had his tubby and had a trach change. 

Then the three of them spent the rest of the afternoon playing computer--Toy Story 3 and Shrek the 3rd. 

Gene worked on the windows adding foam and doing some stuff with insulation and that kind of stuff.
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We get a call this morning saying that our guy could come this morning.  Yay!  He made it here around 10:30 and he and Gene worked until almost 4:00.  We have the kitchen window in and the one in the hallway and the two in the yellow room.  The yellow room ones took quite a bit of time since they had to frame in the bottoms because we're making the windows smaller.  It will be so nice to have 2 double hung windows that we can open instead of the huge monstrosity of non-opening window that was there before. 

Of course Gene still has a lot of work to do on the inside like foaming and doing some sheet rock and then the trim.  We'll see.  I hope it doesn't take as long as the living room windows!

The boys and I spent the day lounging around in the wish room watching movies.  No fussing from either one!  I had Casey ready for the day by the time Nancy got here at 2:00.  Colin was next. 

The boys and Nancy had a good time playing on the Dell and playing REAL computer games instead of Poptropica and other on-line games. 

Beds changed, things picked up, kitchen cleaned, and I tried to keep up with the window mess....it's not too bad but things are out of place and it makes me wonky!

Funny of the day....See picture below:



This is what was behind the microwave cart.  Nugget.  Need not say more!

November so far

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The most exciting things so far this month has to do with Colin.   We got his new DynaVox  VMax+ and Eyegaze up and running.  We also got an arm for his chair and a standing mount for other positions.  We were successful, Aunt Ju was, in putting together the floor stand but not the arm yet.  Yesterday he used the Eyemax from his bed, laying down and we got it calibrated and working!   The stand is a lot nicer than Casey's as it has two swivels so that you can tweak positions easier.  He was quite proud of himself!

This morning we had Colin up in his stander at about 60 degrees, which is the highest he's been and tolerated!  He used his neck collar and that really helped keep him feeling secure. We'll probably have to have Deb adjust the arm pits on his new belly brace as it was digging into him a bit when he was so high up.  Oh, and we measured his length and he's just about 50 inches, give or take a bit!




Ah, we got the boys' Dell laptop fixed on Thursday!   Gene had spent a long time chatting on line and then on the phone with Dell trying to figure out all the calls we'd had on the machine so we could bring it to a local place and have them look at it.  We've had 12 service calls on this machine!  Come to find out there was an extended warranty on the Nevidia (or how ever it's spelled/called) video card which is attached to the mother board.  Anyway, they sent our tech buddy from Slovania here.  He replaced the part and did his thing.  He also showed Gene the fan which was jammed up with DUST!  Gene blew it out with some canned air.  Boy, is this machine quieter now, AND it's running like a demon-I love it!

Wednesday, the 3rd, was the Harvest Dinner to benefit the 8th Grader's field trip to Boston this spring.  I was in a stinky, crappy mood and didn't feel like seeing people so Colin and I stayed home.  Colin was just as happy staying home and watching TV!  Casey had had a bad day at school-lots of yelling and disrupting--but he went anyway (he didn't want to go but I insisted!).  Julia brought G'ma and G'pa O'Neill up and they all went over to the middle school in the van.  Nancy H went, too.  

I guess it was pretty good, although Casey was loud.  He said he didn't  like the loud music but that's still no excuse for yelling!  The soup was a hit (I probably would have tried it although I'm not a fan of butternut squash).  They also had salad, corn bread, rolls, cider, and lots of desserts.  Grandma made an apple pie and I sent frosted brownies.  They were back all too soon.  Colin and I were enjoying the peace and quiet! 

Still worried about Mary although things might be a tad better.  She's responding a bit and still getting meds and tests and that kind of stuff.  Here is Mary's Blog. 

 

 

 

So scared for Mary

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Our friend Mary is currently not doing so hot.  She's in good hands with the crew at UMDNJ and her parents but it's so scary.  She had a bad crash and was most likely without oxygen for a while-not sure how long.  She had been intubated and successfully extubated and then started having a hard time again and started seizing and having a high temperature.

Please read her blog and send prayers to her and her family and her care team.
http://miracleformary.blogspot.com/

I voted today. 
Had a nap.
Ashely got Colin's new DynaVox set up with his current pages.
Did some paperwork.
Ate candy. 
Read a bit.

It could have been a good/normal day but it was all tainted with worries for Mary.  And, not only Mary is having a hard time right now.  Karah, Kaitlyn and Jenna and so many others are having issues. 

SMA sucks.

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cure sma
This was the easiest mammogram appointment I ever had!  (which will probably mean that I have to go back for follow up like I did last time :(  )
Anyway, I was in and out and on the road BEFORE my appointment was actually scheduled!  How's that for efficiency?  I guess I was there at a lull because on my way out the waiting room was full.   Oh, and there were wet flurries flying around on my way home.  UGH!

Nancy L wasn't here today so Colin was in charge of Gene, Aunt Ju and Priscilla.  I guess he whined and fussed and used every trick in the book to get Julia to fix him or get his air out--anything so he didn't have to work!  He ended up doing better the second half of the day. 

Julia spent a lot of time taking down the Halloween things, removing batteries, and putting things in totes.  That's a good job done!  Now I just have to get Gene to put them in the attic.  Maybe it would be easier to keep them out until next year??

Casey got to go to Costco today to pick up some supplies for the Harvest Dinner on Wednesday.  I think he liked it.  They ended up with a flatbed full of stuff!

He seemed pretty tired when he got home.  He rested in bed and fell asleep for about a minute. 

Colin waited ALL day to see the new movie Aunt Chris got him for Halloween.  It is the Scooby Doo Camp Scare.  He watched it two times in a row and would have watched it a third time if we had let him.  We watched Scared Shrekless, which I had DVR'd and that satisfied him. 

Casey had a shower and fiddled with his DynaVox for the rest of the evening. 

We're reading a really good Goosebumps right now.  Casey really enjoys it but is so tired we only get to read a couple of chapters at the most. 

Happy Anniversary to Us!

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Turns out that my husband of 20 years still has some romance in him.  This morning he surprised me with a Past, Present and Future ring.  I totally wasn't expecting anything, and certainly not anything that frivilous.  You'd expect him to surprise me with some of the hard to find bags for our old vacuum or some new doo-dad for the kitchen, or maybe a plant or some chocolate, but not usually a ring!  But, really, that's not fair.  Over the years he has picked out several rings, necklaces, bracelets and earrings for me and they've all been to my liking.  I guess since we had kids there has been less jewelry :-)    Anyway, it's very pretty, although it needs to be resized a bit bigger.  I can't believe how much larger (fatter)  my fingers have become since we got married!  It's tough getting old!  Speaking of, my progressive glasses are in and I can't wait to get them!  Note to self--make an appointment ASAP.

Excited to see the Sacripantes tomorrow!  Plan is to meet them at Echo Lake Aquarium and Science Center a bit before 10:00.  Justin will be able to go, too, since his conference doesn't start until 2:00.  We'll see how the day goes and decide what to do after that.  So many possibilites!  We have a bunch of ideas kicking around and all of them are fun, so bring it on!

Better go to bed so I can get my energy up for tomorrow!

Bone scan day

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Today was the easiest appoiintment ever!  I'll have to remember next time that if we make the appointment early, the boys could still get a good chunk of school in.  We made it to the Fletcher Allen just at 11:00.  A couple of minutes wait, 2 easy forms to fill out and then they came for Casey.  Gene and I went in with him.  It was the same tech as last year and she remembered us (we are pretty memorable :)  )  Casey was perfect!  Of course he's hard to position on the table since his knees won't go straight but it seemed like it went well.  He was surprised that it was over so quickly. 

Then it was Colin's turn so Lauren and I went in with him.  He was laughing and carrying on the whole time.  He was excited when I told him that we'd go to the gift shop afterwards.  He kept saying "gift shop."  It wasn't very intelligible but he was proud of himself! 

The boys picked out some Halloween glasses that were supposed to light up and make noises.  Come to find out, when we got home, that they didn't work.  They even came with a second set of batteries but Julia couldn't get them to work so Gene said he'd take a look.  BIUT he hasn't yet. 

While we were in the gift shop Kathy appeared!  She said she thought she had heard Casey about 45 minutes earlier but thought she was dreaming.  But, she probably did as that's just about when we were walking through to the elevator.  She saw Gene going out to the van and then she figured it out!

Julia was there when we got home.  Gene took off for work. 

Casey watched some football and other shows in the yellow room.  Lauren and Colin played some Play Station. 

Julia took Casey out to get the mail all by herself!  She was very proud!  Colin was happy because they came back in with the Treasure Planet PS game that I won for 99 cents (and $3 shipping) off of Ebay.  Colin asks me about a hundred times a day for the Scooby Doo one that I won.  The bidding just ended on Saturday and he thinks it's going to arrive here like yesterday!

That's about it.  Oh, Janet stopped by with some fall magazines she thought we'd like to look through and find some recipes and crafts and stuff.  She's going to stop by again for a real visit soon.

Gene lit a small, stinky fire in the wood stove.  It took the chill off, but the first fire of the season is always stinky!  He doesn't want to turn the heat on yet because he needs to do something with the furnace filters and we need to clean the intakes.

Anyway, it was a good day. 

Daniel is coming in 2 days!


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