Tuesday, April 12, 2011

Scooby Doo is in the dog house :(

For the first time since Priscilla implemented the Scooby Doo behavior plan--Colin lost his 4 Scooby Doo snacks and Scooby was sent to his dog house. Colin would not stop obsessing about Megamind. He was watching it (for the first time since he saw it in the theater) this morning and wanted to finish it so badly that he couldn't stop saying, "Megamind, Megamind, Megamind." So, he lost his snacks one by one. This means no gaming this afternoon! This could be rough for ALL of us!

Monday, April 11, 2011

Torential rains!

Poor Casey had to get all decked out in a rain poncho this morning. We had heavy rains and some thunder and lightening. I made Gene get up to help Casey and Julie get to the bus. I think that was a good thing all around because he ended up getting out of the house and to the office earlier than normal.


Sunday, April 10, 2011

Happy Belated Birthday to G'ma O

I was bored this morning. All the boys slept in, including Nugget!

Beautiful morning. Warmish and nice.

Casey took a tubby and chose to lollygag so he didn't get to spend time outside. Gene and I took Colin outside and he helped put up the house numbers on the side of the house facing the road. Enjoyed the sunshine (although it was a bit breezy) and then Dada and Colin walked to the pond.

I made a cake for Grandma's belated birthday. Yummy yellow buttery cake with vanilla frosting in the middle and chocolate on the outside.

Grandma and Grandpa came over while I was napping (I was kind of grumpy and thought I was getting a cold).

Gene made a chicken and veggie stir fry and we had rice and a 'lovely' beet salad he concocted.








Here's Grandma putting out her candles!!

Saturday, April 9, 2011

School on Saturday

This morning I had to wake the beasts earlier than on a normal Saturday morning. We wanted to head out to school by 10:30 or so to participate in the 8th Grade Boston fundraiser.

Nancy came at 9:00 and I at least had the boys slightly awake. Watched The Lorax (for the 20th time for Colin) while we got ready.

Beautiful day out. Perfect day for the fundraiser. We made it to school in plenty of time to browse around the tag sale and catch the firetruck pull. I'm not sure how many teams there were but they were made up of school kids, teachers, community members, firemen, etc. They had prizes for the teams that made the most money and who pulled the fastest.

We played a couple of games--hole in one golf, and ring toss. We ate hot dogs and cup cakes. Chatted and walked around. I think they made a pretty good amount of money, but it's hard to say.

We didn't win the 50/50 raffle but the woman who did donated $500 back to the class! Oh, and there was also a car wash going on.

We should have stayed to watch the teachers get pies in the faces but we would have had to hang out for another half an hour and the boys were getting restless. I hope someone got some good pictures!

Settled into the living room and Nancy played Toys Story 3 PC game with the boys. I tried to nap but didn't succeed.

Priscilla stopped by with Nicky, one of the 'kids' that I used to work with way back when I was a para in Milton. She brought her talk typer that she uses which was cool. She talks but isn't always understandable unless you know her well. She looks good! They just stayed for a few minutes but it was good to see her!

AC came over. She brought me a Dunkin Donuts iced-coffee. I CANNOT get used to this! One, it's not good for me (too many calories and I don't need the extra caffeine), and it's expensive....so I'm going to try to be good this spring/summer!

Thursday, April 7, 2011

Trilogy

Colin is sleeping away on his new vent/bipap/Trilogy.

Colin gets his Trilogy!

All-in-all everything went better and easier than I expected. This morning I thought the whole day was going to be a bomb because the hospital called and said they didn't have a bed ready for Colin so not to come in as planned...Some waiting and lots of phone calls later, we got the okay to head in--luckily we are only about 15 minutes or so from our hospital.

Took forever in Registration. Funny thing. While we were waiting in Registration a woman started talking to us...turns out she figured out who we were because she is friends with our old nurse, Darla...and she must have seen pictures of the boys...so while I was up at the desk the woman took her phone out and called Darla so Gene got to chat with her. We're "mad" at her because last time she was in Vermont she didn't come by :(

So, we head upstairs and roll into the PICU. I think we're the only family that ever admits and discharges from the PICU!

Paul (RT) was there. Not much happened, at first. Got settled in. No one really 'got' that we were just there for a couple of hours--guess it's not done much. We were admitted on an 'in patient' level of care, whatever that means. The nurse wanted all this info about meds and all that and I ended up giving her his schedule but it wasn't needed. We already had permission from Nutrition to use our feeds.

Saw Dr. Heath (Intensivist) and caught him up on things. Saw Dr. Lahiri (pulmonologist), etc.

Tuesday, April 5, 2011

Casey goes to the bowling alley but doesn't bowl, nutrition update for the boys

Casey went to the bowling alley today with the high schoolers. Testing going on so he was able to get out with the crew and not miss any core subjects. But, what does he choose to do? He decides to play arcade games when everyone else bowled. Oh well.

Colin had a pretty good school day. He was kind of owing a lot in his stander but looked good. Lauren gave him 3 movies for his birthday, one of which is the Lorax. He watched it during break and was sooo funny! He was very emotional about the trees getting chopped down; so cute! He was quite a pill when Emily came at the end of the day--he closed his eyes as soon as he heard the front door open. She said she's going to have to bring something really fun next time to get him out of this new 'habit.'

Me, what did I do today? Not too much. Laundry. Paperwork. Phone calls. Oh, speaking of phone calls, Nancy L talked to someone at the Board of Nursing for NY State about Julie and Nancy doing some time with the boys during camp. She said it was fine. I hope I get this right-as long as they are taking care of Vermont kids there's no problem. I forget the wording, but I'll ask Nancy and write it down. I hope it's true. Long story, but last year was the first year we brought any nurses to Camp Inspiration and we were not able to have them as 'real' nurses because of what we understood the laws to be, so I am kind of confused but happy. We thought they'd have to apply, and pay for, a temporary license in NY and by the time we realized this is was too late since it can take months for the process. I'm going to check in with Nurse Emo at camp and tell her what we've heard and see what she says...

Linda L was here this afternoon and we worked on the boys' diets. Both boys will be going up tiny bits in their calorie, and protein intake--like 5%. I like to do things slowly! I won't make the new changes until she writes everything up and sends her report. The boys are due for new labs so things may change again..

Casey is about 60 1/2 pounds, 60" in height (1/23/97)
Colin is about 45 1/2 pounds, 50" in height (4/4/01)

Both boys have been on their own curve (off of the 'average' child chart) since they were very young. We keep their calorie/nutrition needs on THEIR curve and they have thrived. We've been lucky that the docs and nutritionists have let us take the lead on this. There are many families that have to fight to use the guidelines that have been determined to be beneficial to SMA kids and this is one fight I don't have to partake in. Yay!

Monday, April 4, 2011

Colin is 10!

Yes, my youngest is now in double digits! Both Gene and I can't believe that so much time has passed! In so many ways it has flown by! I still think of Colin as a little guy and he's not--he's a tween now I suppose!

I made Colin's cake in the morning. I usually don't give them choices as to what kind of cake to make but I asked Colin and he had a firm opinion--yellow cake with chocolate frosting--weird because neither of the boys is much of a taster but he said that's what he wanted so that's what he got! I had given Gene a list of what to get and when he went to Price Chopper some of the cake mixes were on sale. He found a yellow one and brought them up to see if they were on sale, but this one wasn't and it was the only yellow mix they had. Luckily for him, he did the right thing and bought it! He knew there would be hell to pay if he brought home anything different than a yellow cake mix and chocolate frosting!

Colin's class had a bit of a different schedule today which worked out in his favor. He doesn't usually get to see them at snack time but today he was able to be on TV school for it so they sang Happy Birthday to him, ate his cupcakes and Scooby Fruit Snacks and showed off their Scooby Doo rubber bracelets. And, the class also sang Happy Birthday during their music class!

Casey had a pretty good day at school.

I ended up making dinner and complained the whole time. I just don't like it. I know I should do it more often but it's hard because the boys are needy that time of day and I have to go back and forth a lot and I get stressed out. But, I managed to make shake and bake pork chops, mashed potatoes and mixed veggies. Doesn't sound like a big deal, but with the phone ringing and Colin owing and Casey yelling and my hands full of breading...well, you get the picture.

While I was cooking, Aunt Chris gave Colin his 'expected' present; Rango Wii. The minute the movie ended yesterday he said "Aunt Wii Rango." She pretty much told him that he would be getting it for his birthday. So, Julie played with them for a while and they had a grand time. It looks like it's going to be a good one.

Gene brought home a balloon bouquet with lots of blue balloons and a helium with Batman on one side and the Joker on the other. He thought it was cool.

After dinner Colin got to make his wish and put out his candles. We've traditionally used a candle snuffer to put out candles since the boys can't blow very hard. The cake was good and Colin tried his chocolate frosting.

Presents came next. I think he was a little overwhelmed. He is the type of kid that gets something and wants to play with it, not one of the kids that wants to rip open more and more and toss them aside to get more and more!

Colin seemed to really like the Small Soldiers figures that I got off of ebay (they were Burger King toys from 1987, I believe). They're perfect sizes for him and he thinks they're cool. He probably thinks I spent a lot of money on them, too, because I told him that he wasn't going to get any because most of the stuff I originally looked at on ebay were hundreds of dollars! He also likes the Scooby Doo TY beanie baby that we gave him. AC also gave him a TMNT wii game, and the Megamind DVD. He got lots of money, too, which he says he wants to use to buy wii games. We opened a few more things but decided to stop because he was getting that glazed over look in his eyes.

Then it was bedtime and the birthday was over! Well, not really because there are more gifts and cards still to open!



Click on the picture to view a slideshow of Colin's big day!

Sunday, April 3, 2011

Rango and busy week ahead

Everyone enjoyed Rango! Colin wavered between Rango and HOP but finally decided on Rango. I'm glad he did. Dada even went with us today and I really think that he liked it--not sure if he would have enjoyed hop as much.

We all slept in. Of course, I was the first one up as usual. Julie came at 10:00 and helped us get everyone ready. Gene gave Colin a shower...right into his chair and out the door we went! We made it to the theater and our seats while the last trailer was playing. There were only a handful of families in the theater beside us. Casey was so cooperative! He only had two short "yells" but nothing outrageous. He laughed and giggled a lot. I think he liked having his Dada there. Colin was his usual happy self, laughing and talking to the movie and getting excited and expressing his feelings of being worried, or jubilant, according to whatever was going on in the plot. He's so cute!

Played a couple of games afterward, but nothing too thrilling. We used my swag card to buy the tickets and concessions so next time we'll have a free ticket! We spend enough at this theater so it's nice to get something back.

What a pretty day out! It always seems like we choose the pretty days to go to the movies, oh well! It was sunny but breezy and spring fresh.

We stopped at Main Street to see Grandma and Grandpa O. They came out to the van to visit and I went up and got Julia and Roxy, AKA PigDog. She was so excited to see me! She even chose me over Gene!!

Settled the boys in the living room. Kid's Choice Awards on. Colin protested, at first, but then got into them.

We have a busy week this week. Of course, tomorrow is the BIG 10 for Colin! We'll have our normal family celebration in the evening with cake and presents. Tuesday after school we have the nutritionist coming. Wednesday after school our RT, Paul, is bringing over the Trilogy and showing a couple of the nurses some of the basics. Thursday is THE day we go to the PICU for the day for Colin to try out the Trilogy. I'm not too thrilled about being admitted for the day but there's mostly likely no reason we will have to stay overnight. It will be good to have Dr. Heath (Intensivist), Dr. Lahiri (pulm), our RT, Rich from Respironics and some of the RTs we know from the hospital around. No one (well, except Rich!) has used this unit so it's important to me to have other people know it in case we have issues or need something...Colin will not be happy but we will keep him distracted with movies. He's getting so much better about new situations that I know he will do fine.

Oh, and I will be calling the PICU tomorrow to see how the RSV is. A couple of weeks ago it was very quiet and I hope that's still the case. I was hoping to bring Colin to school this week to celebrate his birthday and visit the book fair but so many of the kids in his class, and the kids at the elementary school in general, have been sick with various illnesses.

Friday will be just a normal day, whew!

Saturday is the big fundraiser for the 8th grade Boston trip. There is going to be a fire truck pull, carnival, food, tag sale, music, etc. Should be fun.


Saturday, April 2, 2011

Apnea Link

I wore an Apnea Link last night. Our RT had told us about it one time when we were talking about C-Paps and sleep studies. I snore. Yes, I am publicly admitting that I am a snorer; a loud snorer. I like to sleep on my back because then I have two ears open to hear the baby monitor so I can hear what's up with the boys. If I'm on my side, one of my ears is covered so what I hear isn't as clear. I know it's weird, but I've been doing it for years and years and years. I don't think that I have periods of apnea, but I do think my snoring interferes with restful sleep. I was not very thrilled about doing a traditional sleep study and sleeping away from the boys so this is kind of a pre-cursor to a sleep study as it will provide enough information to the doc so that he will be able to determine if a traditional sleep study is warranted.

Our RT brought over the Apnea Link yesterday and gave me a quick lesson. It's pretty easy to do. There's a small unit that gathers the info which you can wear on a belt around your middle. Then there's a nasal cannula attached that you wear and an oxygen sensor that you place on your finger. Turn the unit on and sleep! It was mildly uncomfortable. I think it will give a pretty good picture of my sleep patterns--better than if I was in the sleep 'lab'. We'll see.

Friday, April 1, 2011

No April Fools here

I guess we kind of forgot that today was April Fool's Day. Oh dear! Casey usually likes to play tricks on people and we didn't plan a thing! Brooke said she was a little nervous thinking we might play a trick on her during the night, but we didn't! Next year will be double trouble!

Casey got off to school with Julie. We were supposed to get a bad messy storm but when I woke up there was nothing on the ground and it wasn't precipitating at all. Eventually it did snow/rain but nothing big--the warning was cancelled.

Colin has slept in HARD these past two mornings! He's not used to being out late at night like we did on Wednesday. He had a good school day. At break time Lauren did his nails with sparkly blue nail polish. Sigh. She had promised him, so she did it. We thought he was over his blue nail obsession but apparently not. He got nice and messy during art. They're doing paper machee.

Casey had another good day at school. Julie actually commented that he is growing up so fast. All of a sudden I think he *gets* it and is acting more responsible and controlling his voice and acting mature. He watched a movie in bed for a while and then Nancy H messaged me and reminded me about the Red Sox opener and I mentioned it to Casey and he wanted to get up and watch. So he watched the game in the yellow room while Colin watched Magilla Gorilla in the living room. I had to do lots of running back and forth (by this time the nurses were gone and Gene wasn't home yet) but they were cooperative for me. Casey had his DynaVox and opened his e-book reader and multitask-ed by watching the game AND listening to a book about the Harlem Globetrotters.

Gene came home and we had huge burgers, fries and cole slaw with his famous slaw sauce.

Bedtime was pretty late. We read about 3 chapters in SuperFudge--both boys kept agreeing that they wanted more.