Our night seeing the Harlem Globetrotters!

All in all we had a great time. Colin wants to go again next year for his birthday, so we probably will but I won't do the Magic Passes again. It was good to be able to get into the venue early and hang out and watch the crowd come in but the half hour "Magic Pass" wasn't that thrilling for our guys.

Happy Birthday to Bob, in Heaven

I'm writing this post several days after my brother's birthday but I'm posting it on his true birthday...

This is Bobby's second birthday in Heaven. The first was truly hard and so was this birthday, but it was a little less intense, I guess I'd say. I truly think the day he was shot, and the day he died, will be harder days for me to deal with.

Gene bought a new American flag to fly in honor of Bobby on his birthday. Last year Dad had suggested that we fly an American flag in honor of his birthday as he was a (ex)marine and had dedicated his life to law enforcement. This year Gene decided that the flag was in too sad of a shape to fly so he bought a new one. He put it up early in the morning in Bobby's honor.

Again, this year, I spent some time upstairs alone in bed and ate chocolate marshmallow eggs. This year I ate ONLY 8 instead of last year's 9! I never knew what to do for Bobby's birthday so I'd traditionally send him a carton of marshmallow eggs since his birthday always coincided with the Easter season and they were readily available and he loved chocolate marshmallow. One year I send him TWO cartons and he said to me on the phone, "What are you trying to do, make me fat?" Ha! He's never been fat or out of shape--ever!

Again, this year, I made a chocolate pudding graham cracker pie which was one of Bobby's favorites. Chris came over in the afternoon and we had dinner and silently enjoyed some chocolate pudding pie.

Our Earth Hour

Nancy H, and Gene looked at me like I was crazy when I said we were going to observe Earth Hour while Casey was in the tubby and then had to get a trach change. But, we did it (turned on the light for the trach changing part :-) ) We founds some oil lamps and little kid lanterns and turned off the lights. Casey was already in the tub and thought it was quite funny! Nancy wasn't too thrilled to be reading books to Casey by lantern light but they muddled through. Colin and I got ready for bed via oil lamp. He thought it was kind of thrilling--which is good, because he usually freaks out when it's too dark.

It's kind of wild how much light there is in our house even with the lights off. So many electronics are always glowing! The clock on the microwave, the clock on the stove, the VCR, lots of lights on the boys equipment, oh, and there's even a glowing light on the blender!

This morning both boys got new g-tubes. So far, Colin's hasn't leaked at all. I hope this change will stop the problem. I really don't feel like seeing GI.

Casey also got his trach change.

No nurse so I snuggled down on the mattress in the wish room and finished The Hunger Games. I'm still amazed that anyone would even THINK of such a scenario to write about. I guess it's a science fiction book and I don't usually read science fiction so maybe I'm missing out on some intriguing plots. I want to read the rest of the trilogy but I'm afraid that they won't be as good as the initial book. But I've got to see...

A Friday

I was kind of restless today. Got a little bit done, but not much.

Casey had a most excellent day today! I guess after yesterday he decided to turn himself around. Good job, Casey!

Colin was pretty good. He's not really 'getting' fractions, but that's okay :) He had a hysterically fun time starting to make a paper mache puppet with Priscilla during art today.

During his break, we made a little video for the cutest little girl celebrating her first birthday.

Casey home early

Gene picked up Casey today because Nancy thought he was acting 'off'. He kept his eyes closed and his face all crinkled up and wouldn't answer anyone. His sats and heartrate were fine. He had a lot of junk this morning and she got more out at school but he is clear now. I think he's just mad because Mel was out and he had a facilitator he doesn't really know and Mr. Wyndorff was out, too. Plus, I think he's still giving poor Nancy a hard time because she was away for a couple of weeks. He's home and snuggled in bed right now listening to an old Gospelfest CD and completely content.

Robbie Rosen raised awareness for SMA

Check out this story about Robbie Rosen (top 24 American Idol Contender 2001)!!! Raising awareness for SMA! Way to go, Robbie!!

Here's a link to Robbie's song for Sophia, "Make it Through"

We flunked

We found out yesterday that they are denying us a rescue Rottie. I am so bummed. Gene is taking it better than me. We are not giving up, that's for sure. I guess they are worried about the dog and the boys. I won't say anymore because I don't want to get started. Sigh.

Happy 1st full day of spring---NOT!!! It snowed!

Yes. It snowed. Not tons but it was totally swirling around and it stuck to the trees and the grass. I just heard that the roads are bad tonight--but more slippery due to icy conditions.

I woke up with a head banger today. I think it was the stupid change in weather. 600 mg of ibuprofen hardly touched it.

Linda was here today for Colin and will be tomorrow. He kind of gave her a hard time about listening and doing work. I think he lost two Scooby snacks this morning.

Casey had a good day at school. He's been getting a lot better about being quiet in the hallways when classes are going on.

Not much was accomplished today. Some phone calls, a little paper work, laundry. Shoot, just realized I forgot to place our DME order.

Paul dropped Casey's new SAT monitor off this afternoon and I turned in the loaner.

Whooeee, so exciting!

OH, WAIT!

The best part about today was when Casey and Colin had a little spat! So funny! Colin doesn't always like it when Casey comes in the living room to watch TV because he can be too noisy and it makes him mad. Julie wheeled Casey in and Colin was perturbed so he said, "Bye Casey!" (sounds like bii aseee) over and over again so Casey responded with his DynaVox, "Colin, bye, bye". They went back and forth for quite a while until AC came and she and Casey went out into the other room to watch football.

Our Belated St. Patty's Day

Today was our day for our boiled dinner. We had corned beef, cabbage, potatoes and carrots simmered perfectly by Gene, spotted dick (Irish soda bread with raisins :-) ), and Grandma made Watergate salad (pistachio pudding, crushed pineapple, mini marshmallows and Cool Whip). In the past, Grandpa O has said my Irish soda bread was as good as his grandma's (or some old relative)! This year I put two pieces on his plate. He didn't comment, so I said, "Well" and he said, "It's okay." Wahhhh! Disappointment. I thought it was pretty good! I had to goad him into eating his second piece!

I never put up our St. Patty's Day decorations but I had kept some napkins out so I set the table with the green linen tablecloth, special napkins and my Princess House Candle Lamp with green water so it looked festive despite.

Casey enjoyed watching a couple of different basketball games with Grandpa. They also watched some Gospel after dinner.

Colin was absorbed in watching Teen Wolf and The Indian in the Cupboard--he didn't say much :)

AC didn't come over. She is still recuperating from a full week at school again.

This morning the boys slept and slept. CASEY actually woke up earlier than Colin! He was content to just hang out and doze until Colin got up and we stuck in a movie.

The first full day of Spring is tomorrow. It was sunny and sparkling out but still pretty cold. Gene made a fire to take the chill off and so the furnace wouldn't keep running. We're supposed to get some snow tonight---Hellllloooo winter! You can stop any time now!

Did we pass????

Today was spent waiting for the 'dog lady' to come. She is from the North East Rottweiler Rescue . We are actually working with For the Love of Dogs but they share a lot of info and help each other out. This woman is from the next town over so she did our home visit. We had no nurse, but the appointment was at 3:00 so we had plenty of time to tidy up and get the boys ready. We had Casey up in his chair but Colin wanted to watch his cartoons so he was on his spot in the living room.

I guess it went okay. There were a few questions that Gene answered and I wanted to kick him but I don't think they will deter us from adopting. She looked around and talked a bit about traits that we'd like/not like, some training issues, how we'd exercise her, etc. She stayed for a good half an hour and then checked out the yard and the partial fencing we have. I hope the yard isn't a deterrent because there's a lot of crap out there (Gene's crap) and everything looks pretty miserable with all the mud/debris and snow. So, she'll send her info to our organization and we hope to hear from them soon!

Oh, and she did recognize that the boys are 'complicated' and mentioned that if it were her organization she would probably bring the dog to us, here, instead of having us go to them. I would LOVE that because I'd really like to see how the dog may react to the medical equipment and the wheel chairs and the boys. So, we'll see!

St. Patty's Day

I managed to snap a few photos of Casey before he left for school today...he was in his fleece already but it didn't really matter since he didn't have a green shirt on! I can't believe that Casey has no green long sleeved shirts! I think last year he wore his blue Irish sweatshirt with the four leaf clovers...but it's kind of getting small for him. Anyway, he still looked cute as he had on a mardi grass bead type green 4-leaf-clover necklace, his plaid green cap and a green earring. At some point during the night he lost his earring so I found my original starter earring from way back in early 90s when I got one of my ears double pierced.

Colin, well, he looked cute with his green shirt and beads but, apparently, some kind of mess was made and he didn't stay in that shirt very long!

I had my appointment at 9 and then Gene and I had a Casey team meeting at school. We talked some about school and some about Boston. The Boston plans are starting to firm up--transportation for Casey when needed, the suite at Emerson, Paula coming as his facilitator, etc. BUT, it looks like it may be only a ONE night trip instead of the planned TWO nights. The fund-raising is going pretty slowly and they need to make lots more money to be able to afford the two nights. WHICH means that the whale watch is not on tap for everyone. The team is quite willing to have us go on our own so we will do that. There is no way we can disappoint Casey after all this talk of going on a whale watch; it's just about all he wants to talk about. Now we just have to hope for good weather on that Friday morning!

We brought Gene and Casey home after the meeting as Julie had another commitment. So we just hung out and didn't do much.

No corned beef dinner for us tonight. :( We just never seemed to get ourselves together to buy the stuff and plan the meal. We'll have the O'Neills over on the weekend to celebrate our St. Patty's Day.

8th grade

Here I am in 8th grade. Casey has been very good and especially quiet. Not sure what is up with that! (but that's okay with us!). So far I've read a couple of chapters of The Hunger Games. What a stressful read it's going to be! I'm also playing with Mr. Scott's iPad.

Casey survives Nana L and P is back

Casey was a little apprehensive about going to school with Nana L, but I guess they did fine :) Gene thought that maybe she should bring a pulse ox (Casey has a portable finger tip one available at all times but the regular nurses rarely use it) but she thought they'd be fine with the portable one...Poor Nana usually does Colin so her Casey skills are rusty. But, they were fine. He had a pretty good day, although Mel cut him some slack (a very little slack is what I heard from Nana) since he hadn't been in school for a while and because he had a 'sub' for a nurse.

I get to go with him tomorrow! I've been to school and have seen him on special occasions but haven't really spent a lot of time with him at school since he was just a little kid! We're only going to stay for his morning core classes, but it will be fun to see all the kids and how they interact.

Colin was glad to see Priscilla again. She was out for a week! She's still wearing a mask but seems pretty much back to normal.

I guess I was a pretty good nursey. I think there were a couple of times that I kind of 'forgot' that I was on duty, but all went well. We got Colin up in his belly brace and chair for music but he wasn't comfy so we ended up reclining him. He still was able to play the recorder and enjoyed himself.

One of those days

Today won't go down in history for being one of our favorites. Nothing bad happened, but the boys were very needy and Gene and I weren't feeling our best. I don't think there was five minutes that I didn't have to fix an 'ow', shut off a SAT monitor beep, take care of a feeding pump beep, take a phone call, etc. This may be TMI but I didn't even get to um, pee, without a feeding pump beeping. Gene and I both got pretty grumpy.

I have no clue as to what to do with Colin. He has been complaining about his back hurting very often, and I mean VERY often. I'm pretty convinced that it's a real pain although sometimes I think that he's just wanting to move and/or get attention. He uses a memory foam mattress most of the time, but when he's in the living room he is just on a plain crib mattress. I don't think X-rays will show anything but we are due to get them done and see Dr. A (ortho) this spring, I believe. I know lots of older kids have issues with pain in the back and hips, etc., so I guess I'll be picking some brains. He gets Ibuprofen every night and that seems to help relax him to go to sleep. I've been giving him Tylenol every down and then for his back pain and I don't even know if it lessens his uncomfortableness. Last night we put the seat vibrator under him and he loved it! Used it again today and he liked it but still had lots of ows. I also used some Burt's Bees muscle cream on his back and rubbed and rubbed and that seemed to help. Sigh. I just wish I knew for sure what it was and how to help him!

Up way too early!

I had no clue as to what time Staci was working until today. I didn't sleep great as I had wacky dreams, and apparently, so did Gene. I kept waking up and looking at the clock and trying to figure out what time it was supposed to be and if I should get up to relieve Staci.

I finally got up at the old 6:20, which is the new 7:20 and went downstairs. I made my first Keurig and went in to see Staci and asked her when she was here until and she said 7:00---oooopsy! I RARELY (if ever) get up late to relieve the night nurse and I felt badly. BUT, Kariann was still snoozing on the couch and it took her a while to gather herself up enough to get up...so for that reason I didn't feel too badly!

Apparently, Kariann zonked out way before the movie ended last night. Casey and Colin made it through and Colin STILL took a long time to fall asleep! AND, he's up now, wedging and watching The Emperor's New Groove! Oh, actually I think it just ended. BRB.

Goosebumps in. Wedge out. Casey still out.

Drizzling and gray this morning. Lots to catch up on around here. Better go.

beCAUSE craft show

THANK you, Jennifer, AKA Auntie Jenny for your years of support for SMA Support. Jennifer has sold tons (well, maybe not tons but at least one ton, LOL) of knitted hats and given much of her profits to SMA Support which is "an all-volunteer, non-profit, 501(c)(3) tax-exempt organization dedicated to providing information and support to family, friends, individuals and caregivers on all aspects regarding the devastating genetic disease called Spinal Muscular Atrophy. Both Laura (the founder of SMA Support) and Jennifer have been a part of our lives since the beginning of our journey with SMA and we appreciate everything that they do for us and so many other kids!

The kids slept in a bit this morning and then we were running out of time so we had to wake them and start the day so that we could make it out of the house to get to the beCAUSE craft show. My goal to leave was 11:00 and we actually made it out on time!

We met Aunt Chris at St. Mike's. I dropped off our frosted brownies that we had made and then we went it. Wow, so many cool vendors to check out!

We saw so many of our Milton friends/teachers: Meagan and fam, Emily, Tami, PJ, Mrs. V, Michelle, and others. Casey was very appropriate talking with people with his eye blinks because I forgot his darn DynaVox. Casey was a good shopper and enjoyed checking everything out. He was disappointed that there were no boy earrings that he could buy.

Colin was a little bored since there were no movies or wii games to check out so he and Daddy took a tour of the Sport Center. They even got to go into the stinky men's lacrosse locker room! One of the players gave them a tour.

I ended up buying a few surprise things for Aunt Julia to give as a gift for taking care of the cats when we go away this spring (will you do that, AJ????) I bought two pins for my jean jackets but that was about it, I think. I loved everything and wished I could buy something from every vendor! So many great causes were represented and I hope everyone made some money for their charities.

Alaina did really well with her mosaic cards/postcard for NEADS - Dogs for Deaf and Disabled Americans.

We also got to visit with Larry and Greg so that was a good thing! Gene isn't crazy about these events so he likes it when he can chat with some guys about guy things! When we were leaving, two therapy dogs arrived so Gene liked that part, too.

Then we took a photo of the boys with the 'purple knight'.

Then we headed home and got the boys settled into the living room. AC came over and hung with us. I got a nap in upstairs, and AC managed a nap on the living room couch!

We watched this past week's American Idol and then some AFV.

Kariann and I were chatting on fb and she mentioned that she wished she could come with her mom and sleep over again, so I said sure! Impromptu sleepover!!!

Staci and Kariann came at 9:00 and we had the boys snuggled in bed. I put on Shrek-the final chapter or whatever it's called and I headed up to bed. Ha aha ahahahahahahaha! Kariann and Staci had to deal with the boys, LOL! Colin talked to the movie the whole time and Casey grumped some but I think all went well. Colin was SO excited to be able to watch a movie late at night and in bed which is only done on special occasions around here. Next time I'll take a picture of the crew; the boys in bed, Staci in the glider and Kariann in the bean bag all watching the movie!

Odd kind of day

It was an odd kind of day. Casey got to sleep in a bit because he didn't have a nurse to bring him to school. One of our nurses had a family emergency and she had to leave the state, and the other nurse that brings him to school is off sailing in the Bahamas....And, Colin's para has been sick all week and three paras were out at the elementary school so there was no one to send here for Colin. We could have gotten a 'cold' sub, but as you guys can imagine, a person that has never been here before wouldn't have a clue as to what to do with Colin.

Casey watched Hairspray in his old room and was quite content. Then we got ready for the day and into his chair and he listened to a good hunk of a book on CD while waiting for Kathy to come to do some school work.

Colin and Nana L watched some Pink Panther and then they did some school work. They did a few fractions, read some information on Vermont geography and finished a story in his reading book. I had told him that he could play computer or wii after he finished and he worked diligently, but then decided he just wanted to watch The Hunchback of Notre Dame.

Kathy and Casey watched some YouTube videos on Guatamala to get some information and flavor for his project. He did that very willingly. When it came time to do some work on his DynaVox vocabulary, he balked. He just refused. We tried everything, cajoling, bribing, kidding, etc. and he just wouldn't do it. Tomorrow he will have to face the wrath of Mel! (she thinks she'll be back tomorrow anyway).

This afternoon was spent wii-ing with Aunt Ju and then Krisite. AC was feeling the need to get caught up on some school work so she didn't come over.

Gene actually went into the office today.

Now I'm relaxing and having some of my homemade frozen yogurt and watching some TV. American Idol is DVRing so the boys and I can watch this weekend.

I think it got up into the low 40s today. SLOWly the snow is melting.

Proposition

So, I told Gene that I had a proposition for him; he could get Casey ready for bed or do the cat boxes. Guess which he picked???