The O'Neill Family Journal!

July 15 through October 4, 2005

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July 15:

Well again, it's been a while...We've been doing well and been staying busy.

We're going to the SMA Family gathering! I really didn't think Gene wanted to go, and wasn't sure if he thought our van would make it, etc., so I didn't bug him too much about going. Well, I guess my tactic worked because HE is the one that kept talking about going. Of course, we waited until the reservation date was passed...then Stacey found out she wasn't able to go so we took over her reservation. Of course I wish she was able to go, too.

Tomorrow we are having a Yard Sale with profits going to SMA Support. We've been busy gathering stuff together, pricing, and all that stuff. I hope the weather holds!

July 16:

We made $188 for SMA SUPPORT!   And that was without the crib or changing table selling.  Actually, not a whole lot of baby stuff sold and hardly any of my Noah's Ark stuff.  We all were pretty surprised.  We had lots of fun visitors.  I called Sharyn, Casey's beloved driver of bus #29, and she said she was just about to go out and check out yard sales, so she came.  Casey got up and ready for the day just in time for her to arrive.  Originally, he didn't want to get out of bed, but knowing Sharyn was coming, it motivated him!

I've missed writing about lots of action in the O'Neill household.  Mom and Dad have been up since July 1st.  They are staying in the same house as the last couple of years. 

One day, Chris, Dad and I went out on a sailing cruise.  The boat is the Friend Ship.  They have a slip in Burlington, right on the main part of the marina.  Dad went out once last year, too.  It's a 30 something foot schooner.  It was a beautiful day--hot but bearable.  We had a nice wind on the way out.  I guess we went too far before turning about because we ended up having to motor part of the way--that part of the trip was HOT!

Summer school

July 21:

OMG. This morning Colin was watching TV on his mattress like normal. Nurse Julie was here for Casey. She came in to see Colin and say hello. She had some Twizzlers and asked Colin if he wanted one. He said, yes. So she gave him half a piece. I didn't see how much she gave him. She went back to Casey and left the Twizzer in his mouth. When I went over to him. He had his little hand on it and it was still in his mouth. I took it out because we were going to brush teeth and get ready for the day. Well, he had tons of thick spit (which I thought might have been coming up since I had done the cough machine earlier) and some red from the Twizzlers. Well, he was fussing and fussing. I kept doing his mouth and he said he wanted "bap" (bipap). His heart rate was high so I put it on. Got more thick spit. I went out of the room. Gene said he got more thick spit when I came back. Then I went over to him and there was a 3/4 inch piece of TWIZZLER on his pillow!!!!!!!!!!! Yikes! He could have aspirated!! I didn't do his cough machine again because he was on his food, but I think I got it all. Poor Julie, she feels awful!!!!!!!!!!

AND, right now we are bringing Casey to the doc AGAIN for his eye!! It looks awful, the lid underneath looks very red with a big bump, and he has a pocket of fluid under his eye. I'll let you know what they say. We are on our way.

July 27: 

It was a bit rainy on and off, but  it's been so nice since the humidity went away.  Jenn came over with Lucas and he had fun playing with all the boys toys.  He wasn't too interested in the boys.  Oh well.   Casey didn't get to go on his field trip because of the rain, but they still made 'mud'.  They brought me home some with a birthday card with pictures of him making the mud.  It's chocolate pudding, chocolate graham crackers with a gummy worm in the middle!  Barb was supposed to come and do some paperwork, but her dentist appointment left her not being able to come.  Mike and John from Keen came to look at Casey's vent and see what why the short tubing keeps coming off so easily.  Turns out it was

July 28:

Happy Birthday to me!!  Boy, I was tired today after last night!  The whole house was awake at 2 AM when Gene came home.   I was awake anyway, so I came downstairs.  Colin must have heard our voices because he woke up BAWLING and Bawling when he saw Terry!  When I went back in, he took just a second to calm down and then he started laughing and yelling and carrying on!   He woke Casey up for a bit, too!  Terry got him back to sleep.  At one point, I think I went down again because he was awake and he had peed through so I helped Terry get him all set.  Then, he was awake at 5:20 AM!!  Yelling, very happy!   I finally went down at 6:45 and tried to get him to sleep, but no go.  Then, Nurse Julie brought him into the living room and played computer with him!  I stayed and tried to snooze with Casey.   Any way, I was still tired!

Bill had some breakfast left from his catering, so Julie went to the fairgrounds with some containers and picked up some eggs, home fries, corn bread, bacon, and sausage.  I got up at 10 something.  Casey slept until Julie woke him at 10:30!

All the nurses got together and got me some Gift Certificates from Brooks, Creative Habitat, and Dunkin Donuts'.  VERY nice--they're all my favorites!

Casey and Julie did their thing.  They watched movies, played computer and drove his power chair outside.  We put his speed up to 2 and he loved it!  Colin and I played it mellow and didn't do much.  We ended up taking a nap at about 1-3!

We all went outside at 3.  It was a perfect summer afternoon.  No clouds, no humidity, about 75 degrees.  We put the boys on the swing.  They took turns with the music.  We threw the ball for Sasha.   Aunt Chris came and got me an iced coffee. 

Mom and Dad came over and right now they are sitting on the swing with Casey.  Mom is reading him books.  Colin wanted to come in. 

Gene just brought me a dozen roses, yellows and peach, my favorites!

We had a great dinner.  Aunt Chris made really yummy chicken parmesan, spaghetti, fancy salad (okay, that was a bag salad, but the good kind!), and crusty bread.  Grandma and Grandpa O came over after dinner and we all had Ben & Jerry's ice-cream cake--mint chocolate chip and cookie dough!  I got to open lots of presents.  Thank you, everyone!

July 29:

Last night I freaked myself out by looking inside Casey's eye lid.  There's a marble size yellow looking cyst in there.  Poor buddy!  I got a hold of Dr D.  He said to call Molly H, our eye doc.  Well, of course they are going on vacation next week, so she gave me an appointment for August 11th!  She said we're doing all we can do and to keep doing it for a couple of more weeks.  Well, I really wanted someone to see it---so to make a long story short, Aunt Chris and I brought him into Dr D at 1:00.  He said the outside looked better, but that was a huge internal sty in there.  He sent us home and said he'd call us when he talked to an eye doc.  Casey, Aunt Chris and I pretended Dr D was the "team" doc.  Dr D went with it because he said he didn't have any allegiance to any team, so being the Red Sox doc was okay! 

So now we have an ointment, Tobradex, which we have to use 2-3 times a day for 10-14 days.  It's a strong antibiotic plus steroid.   I really put the soaks to Casey this afternoon.  The whole time he was playing computer with AC I had a bandana tied over his eye holding the warm compress.  He didn't mind at all!

Oh, and last night went a little better for the boys and Terry.  Colin didn't wake too much and slept well!  He did carryon at one point, but wasn't scared or upset.

July 30:

Nancy Hadd did both boys last night.  Oh, and I had Colin all snuggled in his spot, reading him books, and Gene came in and said Casey had fallen asleep watching the Red Sox!  He brought him and got him settled.  I went upstairs to read.  Daddy finished the boy duty.

Nancy H said she changed Colin's diaper and he woke up.  He was laughing and happy and yelling Da da, Ma Ma!  She told him we were sleeping, so he started yelling, "Na Na"!  I guess Casey slept through most of his hour and 20 minute yelling spree!  So I guess she won't be changing his diaper next time!

August 1, 2005

Casey’s teachers came to visit today!  I like to invite his teachers over every year, so they can get an idea of what he’s about and what he likes and how he spends his time at home.  Casey had summer school (they didn’t pick him up until 8:39!) so he and Julie were out of my hair.  LOL!  Sue and Colin did their thing; movies, splints, computer, while I cleaned up a bit.  I made chocolate chip walnut cookies, had fresh pineapple chunks (Gene cut up the one he gave me for my birthday) and iced tea.  Mrs Tally and Mrs Hepp came over at noon.  They beat Casey!  I guess because there were no preschoolers to bring home, Casey got to stay late.  They also had a big, pretty new bus that has 3 wheel chair tie-downs on it.  We showed them around the house, Casey’s bedroom, the yellow room, the Wish room, etc.  They got to meet Colin (who didn’t seem to be impressed!).  We all chatted and looked at Casey’s things.  Then Julie and I set him up on his DynaVox and then on his computer, so he could show off.  He told some jokes (he has a knock-knock joke and a riddle) but he didn’t always do them in the right order.  He thought that was funny.  He also ‘sang’ the Worm Song for them.  Then he showed them how he can play games on the computer using his single switch.  He did a good job!  Casey will be in a class with 3rd AND 4th graders.  It sounds like they do a lot of great stuff.  And, that they are very active and not a lot of down time!  Some of the upcoming units and projects sound really cool.  I’m really looking forward to seeing how Casey does.  They have a class picnic before school starts.  They also have a monthly parent meeting and a weekly newsletter. 

August 7, 2005

We are back from Camp Gizmo!  It was lots of fun!  Camp Gizmo is a camp for special needs kids.  It’s got several parts to it.  One part is the Bright Ideas team.  There were 5 focus kids.  Each focus kid came with family and their team from home—for instance, PTs, Ots, and teachers.  Then, at Gizmo, there’s a diverse team of professionals that brainstorm with the family and the child’s team around issues that are important to the family.

Not sure what day this was:

My sister, Dad, and I had an adventure today.  Dad chartered a 15-foot Boston Whaler today, with a 50 horse engine.  Actually, Gene and Dad brought it out this morning for fishing.  Then, they met us at an access and Gene went to work while Dad, Chris and I went out for some swimming.  It was a bit rough in Lake Champlain.  It's a rather large lake.  Very Beautiful.   And, we only saw about 3 or four other boats the whole time.  We had fun speeding around.  We went for miles and miles.  I had to hold on pretty good, because some of the waves were pretty big.  We found a nice place to anchor and swim.  (Dad had been there before).  We anchored pretty close to shore.  Had a nice lunch.  We jumped in and swam and walked around.  Aunt Chris and I had our noodles so it was fun to float around.  I even brought in my People magazine to read.   We were watching the sky.  We heard some thunder but it seemed far off.   Finally, we packed up and started to the marina.  We finished one tank of gas.  We switched over, but could NOT get the engine going.  So now it thunders more.  Then we see lightning.  More lightning.  More thunder.  No engine.  Then it rains.  We call the Marina.  She tells us to try waiting 3 minutes and then start it up.  It starts to hail.  BIG hail.  Marble sized hail!  We still can't start the engine.  We call back and the woman on call said she'd come and get us.  We sit in the rain, hail, thunder and lightning.  We see her coming around the point and then we get it going!  We SPEED back to the marina with hail pelting us.  I had my back to the hail.   Aunt Chris had a towel over her head.  Poor Dad had to bear the brunt of the storm navigating back.  Well, we made it.   We're home here and having a good, old fashioned thunderstorm.  The temperature has dropped about 15 degrees.  So, that's our adventure!

 August 12:

We just got back from seeing Charlie and the Chocolate Factory.  We had Colin on bipap the whole time in the theater, since it's SOOO loud in there we wouldn't really be able to hear him fuss.  So Nancy put him on his belly,
without bipap.  I was trying to find something on the TV for the boys.  I heard Colin fuss, but didn't pay attention because I thought he was mad about the shows I was picking.  Then his monitor started beeping.  I didn't
pay much attention to that since he kicks his feet up when he's on his belly.  Well, Nancy went to check on him or something and noticed he was in trouble.  He was blue.  The sat machine said 60 something sats and 70 something heart rate.  Colin has not done this IN AGES--EVEN A YEAR or two.  I think she probably had his neck crooked, and then he also had lots of air in his belly and he pooped and just lost it.  Poor bugger.  We went to cough him and of course the mask was being washed. 
We got it and suctioned and coughed and vented his belly and he slowly came up.  I actually was about to call 911.  I was really scared.
Now he's back on bipap and talking to his show.  Casey was such a good, quiet big brother while all that was happening.  He must have been scared.


The boys liked the movie, I think.  Casey was a very good boy and very appropriate.  We've had trouble with him before "yelling" during movies. Colin sat with Grandma Canosa and held her hand.  Weird, but my 80 year old mother loves Johnny Depp!  I wasn't crazy about it.  It was pretty screwy and dark, which I expected, but it just didn't feel right to me.  I kind of did like the end of the movie...I won't spoil it for those who haven't seen it yet!


September 6:

Both boys saw our pulmonologist today.  Our Intensivist doc, Dr Heath, came down to see them, too.  They were both very happy with how both boys looked and how they were doing.

For Colin, no changes.  Dr. Lahiri does want Colin to see a GI specialist about his vomiting.  So we'll be doing that soon.  He was amazed at the movement that Colin has maintained.  They loved his attitude, too.  Colin kept saying, "hello, hello, hello" and "bye, bye, bye" like he just wanted to get everything over with!

For Casey, we may try adding a PEEP to his vent settings.  DR. Bach had said he didn't need one, but now it seems like there's talk about having a PEEP is beneficial, so we'll be trying it out.  DR. Lahiri was very happy with Casey's trach site and his chest shape (no changes that he saw) and his expiratory volumes and all that stuff.  He was very impressed with Casey's maturity, too!

So that's it for 6 months!  We also got scripts for both boys to have Albuterol and Duoneb on hand.  Hopefully, we won't need them at all.  I think Casey used Albuterol ONCE last winter and Colin not at all!

I also gave him a Faces of SMA CD.  I explained a little bit to him about MJ and The SMA Gathering and all that.  He seemed excited to view it.  I'll let you all know if I get any feedback from him.  

September 9:

We got our disk from Cyndi Broome today!!!  She's the photographer from the Gathering.  She got one good one of the boys together.  By the time we had the boys together, Colin had enough!  The ones of the boys individually are AWESOME!  She did a great job.  AND, Casey's eyes are OPEN!  We had the hardest time getting Casey to open his eyes, but she managed to get lots of good ones of him.  I wish the sty in his eye wasn't there but, oh well.  I'm looking forward to getting the final product and displaying them!

September 11:

I think I am sick. Okay, I'm not too sick to whine, so I'm whining to you guys. I hate not feeling 100%. Casey seems fine. Colin was fussy last night but seems pretty normal today. My body aches, I'm nauseous and my
brain feels fuzzy. Not good since Colin is supposed to start TV school this week and one of his nurses is on vacation.

September 12:

Bad Mommy Story:  Okay, first, last week I didn't go to Colin's Open House for Pre-school. (my parents last night here was the same night. This is his second year of pre-school so I know the teachers and the classroom. But NOT the kids or parents)  Now, today, PRE-SCHOOL started and I thought it didn't start until WEDNESDAY!!!!!!!!!!!!!!! Luckily, sort of, Casey's bus was very late so when I went out to find out why, they said they had to stop and put the car seats in for the pre-schoolers (I KNOW, it should have been done BEFORE today--don't even get me going about the bus company this year) so they were WAY late. At least then I knew that preschool was starting! So I called our Intensive Needs teacher and she was saying how badly she felt that we hadn't pre-planned for his first day, etc. Oh well, he's doing fine. His CF (temporarily) is someone we know and Colin really likes so they're doing fine. She did have some things ready and I quickly got stuff out that we needed. He's out there now doing circle time with the kids!

September 16:

Colin had TV school today.  Linda was back, which was good.  She's done a lot of work making boardmaker pictures for all the activities they'll be doing.  Each day they will put his schedule on his Velcro board so he'll know what to expect.  Angela has some areas that the kids are supposed to do and then some choices.  We also want Colin to use the computer every day and his DynaVox, too.  We haven's used the DynaVox yet, but we will.  I started playing with the SmartNav and the computer, so Colin was anxious to play so we tried him with it.  We tried all sorts of positions with him in his KidKart and the computer in different places.  It's sooo frustrating.  He knows what he's doing, but we just can't get the positioning right for him to be truly independent.  Right now he's just winging his arm around because he knows he's doing SOMEthing, but he hasn't learned to use the precise movements yet.  We may have to Velcro down his arm so he can't move it so much!!

Meagan came for her first school visit.  They played a color game.  Colin would pick the colors on his DynaVox using using the jelly bean switch by squeezing it with his fingers.

Poor Casey had a BAAADD day today.  He lost his computer time by 10:30!!  I think he was tied, and Nurse Sue was with him (she was filling in for Nancy while she's on vacation), and Priscilla was back after being out for two days, etc.  I made it clear that he would have NO computer time   And, Nurse Nancy R was here and really wanted to play computer, but I would NOT let them.  I think Casey really gets it so I'm not sure why he can't keep it together at school!

September 18:

Julie came over with some leftovers from Bill's breakfast at Camp Takumta for the Make A Wish walk.  I scarfed some of that down and then we went to see Elizabeth at the hospital and to meet Baby Benjamin.  She was glad to see us!  I never got to see her when she was pregnant, which stinks.  She looked good--perky as usual!  Her brother, John, and his wife were there, too.  Of course, Brian was there, too.  I got to hold Benjamin quite a bit.  Elizabeth let me see his whole, little scrawny body!  I love little babies!  He was pretty quiet and sleepy when we were first there.  Seems as if he has his days and nights mixed up.  He finally woke up and nursed for a while and did some poopies.  After that he was wide awake and I got a great photo of him!

September 19:

Went to Casey's team meeting today.  This was the first time that I've been to school since it started!  I found Casey in the gross motor room with Priscilla and Julie.  Priscilla said he was being a "pill".  He was at yellow.  They were playing something on the computer and he was just clicking away and cackling!  The meeting was good.  We're going to give the behavior plan that's in place another week or two before we decide to change anything.  We also talked about POSSIBLY having Casey come in LATE one day.  We had never thought of that before.  I think he'd like the extra sleep in the middle of the week!  Brought Julie and Casey home since Julie needed to leave early today.  

September 20:

Pam came today.  She was supposed to cast Colin for his new DAFOs but she couldn't find the materials at work.  Grr.  She'll come in two weeks to do it.  She did notice that right leg was out of the socket.  It didn't seem to bother him.  Pam could frog out his left leg like normal, but his right leg kind of got stuck.  Colin was on his back and moving his legs in and out, which she says is a good way for him to get it back in again.  She left a note for the nurses to be careful and watch it.  

September 21:

Casey had a respiratory/chokey episode last night.  I woke up, must be because the sounds that I heard from the monitor were different.  Terry was giving him lots of big breaths and I heard the vent making the whirring sound.  Then I heard the sat monitor beep and more vent noises and more sat monitor beeping.  Not good.  I went downstairs and he was at 76% oxygen!  I got Terry the cough assist while she was trach suctioning him--we NEVER have to do that at night!  She didn't get much, but you could hear the stuff rumbling in his lungs and lots of thick stuff was coming out of his mouth.  After a few coughs cycles, he cleared up fine and his numbers were completely normal and he was happy.  He went back to sleep pretty quickly!

Colin threw up again this morning.  He was pretty gassy over night.  This morning he had lots of thick secretions when he did his cough assist.  (Welcome back, Nurse Na Na, we missed you!  She was on vacation for a whole week!).  He was acting pretty normal, and excited about school.  Oh yeah, the school end of the link was upgraded today!  We signed on and Ed Barry and his tech and Angela were there and we did a test.  The sound is MUCH better, and I think the picture is better, too.  They got a huge TV and a taller stand to put it on so we can see over some of the objects that were in our way before.  AND, we can still manipulate their camera on our end!!  VERY cool!  Anyway, Linda and Colin were doing their thing, reading the circle time book and all that stuff.  She said she thought his cheeks were getting pink and his heart rate was going up and he had a lot of secretions.  I should have known right then...He was trying to see what they were doing at school, so I took off his bipap to try him without it for a bit.   Not much later he started spewing.  Of course, it was right when Barb came by with her social work student.  She sure got a taste of medical stuff!  Nancy and I worked well together, Nancy putting on his bipap and suctioning, and me stopping his food, venting his belly and helping him expel tons of gas.  He said he felt better right away.  So, we signed off of school, but Linda continued working with him anyway.  They did some letter matching and some computer.  

Barb, the student and I went out for a bit.  We got some iced coffee and then went to Brooks for a bit.  We talked a lot about the programs that we are part of for the boys, and all the support we get from the online community and all that kind of stuff.  

Aunt Chris didn't come over tonight because she's got so much schoolwork to do.  

I ended up playing about 45 minutes of Sponge Bob on the computer with the boys.  Casey had a "yellow" from school which lets him get "some" computer time.  I made him do his homework with me first.  He wasn't happy about that.  I had to really put it to him and let him know that if he yelled all through his homework and didn't even try to work with me on it--that there would be NO computer.  I gave him 3 minutes on the timer to think about it.  It worked.  He got done what he needed to do!

September 22:

Colin slept really well last night, poor tired buddy!  I gave him some Claritin and some Tylenol, so I'm sure that helped.  I heard him fuss at 10:30 but that was it!  Nancy H said he never made a peep!  Casey slept really well, too.  I guess school just wears him out!

September 23:

Happy Birthday in Heaven, Gilly! We've had a candle lit for you today, and we'll be sure to say a prayer around it before bed tonight for you. You are missed here on this earth by so many people. We miss your bright smile but your shining spirit is still with us.
Love, Sue, Gene, Casey and Colin

He's had a looooong week! Today he came home and his hands were cold. A sure sign for him that he's not feeling well. I think his body takes all its energy towards fighting whatever it is that he has, so his extremities get cold. He usually is toasty! He was quiet this afternoon and watched Shark Tales with Colin and then played Nick Tunes racing on the computer with Aunt Chris. He enjoyed it, but he was pretty mellow. By the time we got him into bed to get ready he watched a tiny bit of the Red Sox game) he lost it. He was fussy and crying a little. He just wanted to sleep! His temp was 98.4 axillary, which is a bit high for him. He even picked to wear long pajamas instead of boxers, so he must be feeling like he needs some extra comfort! He was asleep within seconds of being tucked in.

Send us some prayers if you will.

September 24:

Casey slept pretty well last night.  His respirations and heart rate were up a bit, but he slept about 14 hours.  He's been pretty quiet today, but seems okay.  Now I think I have a cold.  It doesn't seem like the symptoms Casey has, well, maybe...I have a sore throat (he says he doesn't) and my legs ache and I'm tired.  This is the second time this fall that I haven't felt right--call it cold, flu, whatever, but I am worried about the boys this winter.

September 26:

We met with the new pediatric GI guy today. We had to wait a long time, but Colin was in rare form! He was chattering away and happy, happy, happy while we waited. Three therapy dogs came through while we were waiting so Colin got to pet them and "ruff" at them. The new doc is awesome. He is pretty young. He took a lot of time with us and didn't make us feel rushed at all.  He did get to touch base with our pulmonologist right before he came in to see us, so that was good. He spent a lot of time talking about why we thought Colin was throwing up. We're pretty sure it's when he's slow in the poop department, has too much air from bipap and is getting a feeding. He listened to his lungs and belly and all that. He was off bipap for the whole appointment (Colin tends to need it when he's stressed or in unusual situations). But he was perfect. His lungs were absolutely crystal clear. He doesn't think he's aspirating at all with his vomiting. He's pretty convinced that his nissen is still intact. He wants us to try a more vigilant bowel program (maybe miralax every day instead of every other) and vent his tube more. If he's still throwing up, then he may want to have Colin come in again and go under flouroscopy to see how his nissen is working. We did it once way back in 2003, I believe, and it was working fine. He wants us to stay on the 2 ml of zantac twice a day. He doesn't think he has more acid than normal, but it will protect his esophagus if/when he does experience a bout of reflux or throwing up. He said he really shouldn't need the reglan, so we're going to stop it and see how he does.

He even took the time to look at pictures of Casey's belly and tube placement. Casey has had his g-tube for almost 8 years. He's had scoliosis surgery and grown soooo much. It kind of is near his rib and I've been a bit worried about it--especially after hearing about Kaelan Henry having his redone. Our guy said it's not usual to need to have it changed, but with SMA and neuromuscular stuff, and scoliosis, it is a possibility. He thinks Casey's looks fine for now but he'd be happy to see him if we are concerned.  He's originally from upstate, NY. Actually, just a couple of towns over from MJ! He said he has seen some type one kids when he was at Columbia.  Not many, but some. He said none of them were doing as well as Colin or looked as good! Yay!

So that's where we are.

September 28:

We were going to bring Colin to pre-school today, but we chickened out.  Since we have Open House tonight, we didn't want to bring him to school twice in one day and expose him to two different sets of germs!

September 29:

We enjoyed Casey's Open House last evening!  Colin was very chatty and happy.  The bank people gave him stickers.  Casey enjoyed showing us his desk and his work folders and his progress notebook.  Mrs. Talley showed me the pictures she took of Casey on Johnny Appleseed day.  They were still on her camera...hopefully she'll email me them soon.  Both boys fell asleep VERY quickly once we had them tucked in!

September 30:  

We have a new member of our family!  Cousin Tiffaney had her baby today!  His name is Benjamin!  He is my mom's- brother's- daughter's baby!   I don't know much but I'll post pictures when I get them.

October 1:

Happy Birthday to Gene!  Nancy Lanza didn't come today as Rosie (her bulldog) had a seizure and she was worried and nervous and wanted to stay home to watch her.  So that kind of changed our plans for the day.  We just did stuff around the house and Gene went to Price Chopper to get a turkey.  Grandma and Grandpa O'Neill, Peggy, Steve, Tyler and Aunt Chris were all here for dinner.  We had a Thanksgiving-type dinner complete with Gene's 15 cent can of cranberry sauce from Mr. G's!  I made a German Chocolate Cake with the yummy chocolately, coconuty, pecany frosting.  We also had Breyer's Natual vanilla ice-cream which is my FAVORITE.   The boys helped Gene put out his candles with the candle snuffer.  Tyler played lots and lots of computer games with the boys.  Casey got up in his chair for a while so Colin had Tyler's complete attention for a while, which he ate up.  Nancy Hadd still gave Casey his tub bath, so both boys ended up going to be late!

October 2:

Colin slept so hard last night that he didn't PEE all night!!  He was totally dry when he woke up around 8AM.  Of course then he flooded his diaper and his bed...but that's okay!

Peggy came over pretty early.  Steve dropped her off on his way to the VA event that he was attending.  Peggy made us eggs with lots of cheese and veggies.  Gene "broke out" a bottle of sparkling grape juice.  Peggy put her glass on the floor, by the couch, and Sasha drank it up!  Peggy was sooo mad!  

Gene left for his motorcycle outing.  It was the perfect day for a ride and probably one of the last days that he'll ride this year.  

We woke Casey at 10!  He had an extra good nights sleep.  He came out and hung out with us for a while, but then he wanted to go back to bed and listen to Teddy Ruxpin.  Colin and Peggy played "Happy Family" for a long time.  Oh, first they played 'baby'.  I brought out Colin's twins Nancy and Greg and the doctors kit.  Colin had Peggy in stitches over how he plays with the dolls!  He was saying "ah", and coughing, and wanting to look in their ears and nose and wanting to feed them and burp them!  So, Peggy brought up her Happy Family house.  I guess she has lots of extra rooms but she didn't bring EVERYthing.  It's really cool.  There are batteries in it and things all over the house make sounds or talk.  The radio sings and does the weather, the phone rings and leaves messages, the doorbell rings and people answer, the microwave and the toilet and shower all make sounds!!  She has lots of little kids, a dog and a baby.  She also has a mom that has a removable pregnant belly!  Colin and Peggy enjoyed themselves for a LONG time!

Casey came out around 2PM to watch the game.  Aunt Chris came, around then, too.  Oh, Steve left the event early as there wasn't much going on, so he was here, too.  We had a long discussion about schools and special education and such.  

The Red Sox WON!!  So, they are the Wild Card for their division!  Aunt Chris thinks that the Yankees secretly wanted the Red Sox to win!

Casey has to bring in a fruit or a vegetable tomorrow for an experiment on water displacement.  We decided on a pumpkin that we grew.  I printed out a fact sheet for him to bring to school that says a pumpkin is a fruit, just in case Mrs. Talley asks him which one a pumpkin is!

October 3:

Colin had a good day at TV school.  He really seems to like his new communication facilitator, Shannon.  He was very silly and 'laughy'!  Jennifer came and we did a little bit more 'formal, unformal' testing of Colin.  She tested his color and shape recognition, and things like that.  He did well.  He's right where he should be which is something like 'emerging skills, getting ready to learn to read and write' or something like that!

Casey came home with a yellow.   I think he was testing to see how far he could go and still get a green, well, I guess he found out!

October 4:

It was a beautiful Indian Summer day today.  Colin went outside on the swing with Nancy.  They blew bubbles and hung out.  I had a nap!  Pam was here earlier and made ONE AFO for Colin, but one of the kits was bad so she has to come back again.  She said she sent the paperwork to Terry at CSHN yesterday for Casey's seating for his power chair and for Colin's Easy S!  YAY!  Both of Colin's hips are screwy.  The one that was out is still out and the other seems like it's partially out.  She really wants an x-ray to see what's going on before we stand him.  But, the good thing is that his hips do not seem to be giving him any pain. 

Casey got a 'green' today.  The kids are doing NECAP testing so he spent a lot of time working on his IEP goals, the DynaVox and the computer.  He didn't want to watch the game this afternoon, so he watched a DVD with Colin, but he kept peeking at the game.  A HUGE loss for the Red Sox.  This did not set a good tone for the rest of this series.  *sigh*.





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