through October 4, 2005
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
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!
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
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
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,
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
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!
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.
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!
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.
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
Not sure what
day this was:
sister, Dad, and I had an adventure today.
Dad chartered a 15-foot in
my People magazine to read.
were watching the sky. We
heard some thunder but it seemed far off.
Whaler today, with a 50 horse engine.
Actually, Gene and Dad brought
out this morning for fishing. Then,
they met us at an access and Gene
to work while Dad, Chris and I went out for some swimming.
It was a
rough in Lake Champlain. It's
a rather large lake. Very
we only saw about 3 or four other boats the whole time.
We had fun
around. We went for miles and
miles. I had to hold on
because some of the waves were pretty big.
We found a nice place to
and swim. (Dad had been there
before). We anchored pretty
Had a nice lunch. We jumped in and swam and walked around.
and I had our noodles so it was fun to float around. I even brought
we packed up and started to the marina.
We finished one tank of
We switched over, but could NOT get the engine going.
So now it
more. Then we see lightning.
More lightning. More thunder. No
Then it rains. We call the Marina. She
tells us to try waiting 3
and then start it up.
starts to hail. BIG hail.
We still can't start the engine.
We call back and the woman on call
she'd come and get us. We sit
in the rain, hail, thunder and
We see her coming around the point and then we get it going!
back to the marina with hail pelting us.
I had my back to the hail.
Chris had a towel over her head. Poor
Dad had to bear the brunt of the
navigating back. Well, we
home here and having a good, old fashioned thunderstorm.
has dropped about 15 degrees. So,
that's our adventure!
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
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
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!
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.
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!
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!
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
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
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
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.
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!
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!!
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.
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!
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!
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
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.
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
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
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.
Chris didn't come over tonight because she's got so much schoolwork to
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!
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!
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
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.
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
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.
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!
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!
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.
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
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
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
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!
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
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!
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*.
FAMILY JOURNAL 12
|Apr. 17-Jun.12, 2002
||June 17-Dec 2, 2002
|Jan. 3, 2003- April 4,
||April 5, 2003-June 23,
|June 28, 2003-Dec 2003
||Jan. 2004-June 16, 2004
|January 05-March 31 2005
||April 2005-June 2005
2005-October 4, 2005
|| October 5,
2005-Dec 31, 2005
|Jan. 1, 2006 to
April 17, 2006