October 5, 2005
We're going apple picking today with Colin's pre-school class! I
persuaded Gene to go with us, too. So he was our 'driver and
pusher through grass'. Shannon (CF) came to the house and rode
up with us. I think it's really good for her to see Colin
outside of the TV school environment. She was very helpful and
in tune with getting him strapped down in his Kid Kart and watching
his tubes and all.
here to see our Apple Orchard page!
was a picture perfect Indian Summer today. Sunny, warm, breezy
and smelling like fall. The trees are changing color. To
tell you the truth, I haven't been paying much attention to the
foliage or tourists this year, but I know the trees are changing and I
know the tourists are here!
had a super day at school. Nancy H said he would give him a 10
out of 10! He was very appropriate (except for a bit of yelling
during social studies), and got lots accomplished today. He did
his water displacement experiment with his pumpkin, drove his power
chair to Mrs. Gage's class (she's teaching 1st grade this year) and
visited with her class, was perfect during the school assembly that
the 5th graders put on. They presented a $13, 000 check to the
Red Cross today for Katrina relief! Gotta be proud of
that! He also did some math and worked on his DynaVox and had
some fun playing computer, too.
The boys have been
doing really well. Casey has been having really good days
at school. He's been more respectful (not "yelling" as much)
and listening and cooperating
and working on his school work and IEP goals. He comes
home happy and TIRED! Colin has been doing really well, too. He's
been on Miralax every day (instead of
every other) off Reglan, and hasn't thrown
up or been uncomfortable. He's been sleeping pretty well, too. He's
been very into TV school. He has a new
Communications Facilitator (CF) who he
really seems to like. Today we went on a field trip with his
pre-school class. Here's the
link to our trip.
Gene is doing pretty
well, too. He is back in Physical Therapy for his numerous
aches and pains but it really seems to help. He's really proud of
some new technology that he has had a
hand in at work. Something about cameras
I just got a call
today from my mom. My dad has to go in for angioplasty on Friday.
He doesn't like to reveal much, but I guess he has been having pains
for a while and they've been watching him. So he had some lab work
done today and Friday they will do the
cleaning out. They're not sure if they
will have to put a stent in. It stinks that we're all up here and
can't help out. My mom doesn't drive
any more. They have a friend (who is older
than them!) that will drive dad in and mom can stay with. He may not
even have to stay the night. We'll see.
Me, I've been feeling
kind of punky. Kind of depressed. This is not like me
at all. I am getting through the days fine, just not getting much
accomplished and not feeling like doing
much. I haven't felt like talking with
anyone, either. So if I'm absent from here, that's why.
Happy Anniversary to
me and Gene! 15 years! Poor Gene, I was not in a very good
mood today. Just blah. Gene brought me a dozen roses after
work today. Very pretty yellows, and pinks. We didn't do
anything special. We were thinking of going out to dinner but we
would have had to bring Colin (Casey had a nurse). We decided to
Where do I start? So
sorry to hear about yet another two victims of this disease--.
I'm sending prayers to the families of Rhine and Christian.
My dad had angioplasty
this morning. He was worse than they thought. Finally,
my mom found out he will need a quadruple bypass. He's staying in
the hospital until surgery which is
tentative for Monday. He's on two drips,
nitroglycerine and something else. He got up and walked for a while
tonight. He has a retired physician
friend that's helping him through all this.
My mom is pretty fragile. She can't really take care of herself
physically. She doesn't drive anymore.
She has RA pretty badly and can't even
tie her shoes. I can't even go down to FL to help because of the
boys...well, I possibly could some how, but it wouldn't be easy. AND,
I can't even fly because I don't
have a picture ID and DVM is closed for the long
weekend. Aunt Chris will probably go down. I hate to put it all on
her. She's more emotional than I am
(one thing I've learned with SMA is how to
be strong when it's needed most).
Then, I JUST get a
phone call from one of my best friends from High School. I
don't see her much or even talk much anymore but she's always out
there for me. Well, her husband,
our friend, just died. He was 41. He was an alcoholic.
He and Maria had hard, hard times. He just could never give up alcohol
despite lots of help and rehab several times. He was a very fun,
friendly, book-smart guy who would do
anything for you. I'll always remember
how he would drive out to the other end of the island (LI) to come
and get me, and bring me to their house, when
I was down visiting my brother so
we could all get together. Of course, I can't go down there either.
She has lots of support but I
would have liked to have been there.
There's more, but
I'll stop here since I'm depressing my already depressed self.
Stay well prayers,
and get well prayers are being sent from me. Jerika,
so good to hear how well you're doing! Laura,
best wishes for a successful fundraiser! Madison
B, we're sending you special, secret get well kisses, okay??
MJ, I hope you find Wright State as
awesome as you have hoped!
And, everyone, I'm
thinking about you all.
My dad has his
quadruple bypass surgery tomorrow (Monday) at 6 AM. If you have
a prayer list, or a 'get well' list, please put my dad on it. I'm
actually feeling pretty good about his
surgery. He has an excellent doctor, and
he really is in good physical and mental shape. My sister will be down
there later this evening. She'll be a
big help to my mom. Thanks, guys.
My dad is out of
surgery and he did well. They ended up doing FIVE bypasses, three from
his leg and two from his mammary
area (?). They now have to wait to make sure he wakeups on his own and
all that kind of stuff. Thanks for the continued thoughts and prayers.
My dad seems to be
doing well. I spoke with him this morning. He said he was
going to audition for Sponge Bob because his voice was so funny after
being extubated! He certainly still has
his sense of humor! He still has lots of tubes but he feels okay. The
docs said his heart was very strong and
healthy, just those darn arteries. Mom and Aunt Chris were going over
today. He slept most of the day and
night yesterday. Thanks for the continued
thoughts and prayers!
From Laura Stants:
SMA Support $1 fundraiser things that came in, I haven't had time to
send to everyone everything, but I had to pass this one on.
$10 came in
from a Ms. Philomena Nardozzi for Casey & Colin. In it,
she wrote this: "Enclosed is $10 for SMA Heroes Casey
& Colin. Although I do not know Casey & Colin &
their parents, I remember their grandparents. Bob Canosa was
the principal in the school where I taught and he earned my respect
and gratitude for his leadership. Philomena"
Well, yesterday Colin
did a "dippy". His sats went down to low 80s. He was fussing
during the shower and when we got him out we suctioned, vented his
belly, in/exed, put on his probe, did
some blow by. He came up fine. He's been
extra, extra spitty, and kind of egg whitey stringy spitty. He sounds
nasally but nothing in his lungs. He is
wanting bipap but is in a fine, silly
mood. Prayers that he gets over this quickly would be welcomed!
6:45 PM Well, I
started with a post nasal drip and sneezes, sneezes, sneezes, watery
eyes, etc. It really feels like a cold,
not a flu, so that is good. Colin
is hanging in there. He's been wanting lots of bipap and his heart
rate still is high with it. He also
actually dripped "snot" out of his mask!
It snuck right out and dripped down. He's never done that before.
We've in/ex'd lots of
times and he's had a shower to keep everything loose. Casey
sounds the tiniest bit funny. I sure hope it doesn't run through the
whole house, including the nurses. So
far it's just Colin and I. Take
This morning MJ sent me an
email from Pingrong, AnMei's mom. MJ sent her a blanket from
B4SMA and it is the one that I made! See it, and see how happy
AnMei looks! She is a cutie, for sure!
Colin is giving us a
run for our money! He is certainly in a good mood (99% of
the time) but he is being very demanding and not sleeping at night a
Let me start over...
Colin had lots of
secretions last week. I declared him having "a cold" on
Saturday. He had woken up early but I
convinced him to go back to sleep, which
is very unusual for him. He had lots of secretions pouring out of his
mouth and nose. Better out than in, we
all say! He needed/wanted bipap a lot.
He'd be okay off for a while, but having higher heart rates. He even
had high heart rates ON bipap. His
oxygen levels were fine. He never was below
96% Okay, so he was when he did his "dippy" on Friday, but
what was because his neck was
crinked and he had too much spit.
We made it through
Saturday fine. He was happy and demanding. Only certain movies
or shows could be watched. Casey was a trouper and mostly let Colin
have his way. Nancy Lanza, Casey, Colin
and I played our new Sponge Bob Life
board game and had a ball. Then, Gene stepped in and played two
boardgames of Shrek 2. Nancy L also played computer with the boys. I
had a nappie. Nancy Hadd came in
the evening and played more computer with the boys.
At about 6 o'clock or
so, I declared myself as officially having a cold. I grabbed
some cold medicine and within 20 minutes I had broken out in hives
on my face and back and arms. I didn't
check to see if it had Tylenol in it.
Duh, I am allergic to Tylenol. I usually only buy Advil/Cold medicine,
but Gene sometimes gets me generic
stuff (gotta love him) and I had put all the
cold medicine in one box in one of my Flylady
fits. I let Gene and Nancy put
the boys to bed. I got into bed and read and fell asleep EARLY.
Colin slept pretty
well. He had one or two fussy periods that I heard, but Terry
handled it fine and got him back to sleep. Wait, actually, I did come
down once and crawl into bed with him
until he fell asleep. Nights just kind
of blend together in my poor sleep deprived brain.
Sunday, Colin was
raring to go, babbling away. He thought he sounded so funny
with his nasally voice! He still needed bipap a lot. I gave him some
cold medicine, Tylenol Day, and he did
fine with it. After a couple of hours,
his eyes were looking funny. I asked him if he wanted a nap, He gave
me his frown and said, "NO".
Well, he fell asleep watching a movie, about half
an hour after that! VERY unusual for him. He slept for about an hour
and a half.
Colin looked better
when he woke up. And, he was happy. Casey used his DynaVox.
Nurse Sue finally got his hand/switch right while he was laying
down. It is so hard and frustrating to
do it! We will find a better way soon,
I hope. When he's at school, he sits up in his chair and we have that
setup down pat. He thought it was cool
to show us the buttons that Priscilla
made telling us what he did each day last week in school.
Both boys were in bed
early last night. Gene read three stories to us while I
lay sort of in-between both boys. Colin was sleeping well. I went to
bed slept, too. At about 11:00,
Colin was crying and fussing and having a fit. I
heard Gene in with Terry talking to him and trying to settle him down.
He wasn't settling, so I went
down. I got into bed with Colin. I heard water in
the bipap tubing so I tried to lift the tube and get the water to go
back into the chamber. Terry and
Gene had tried to do the same, but there was no water
in it. I thought maybe there was water in the sensitivity tubing (we
have the Knightstar 330) so we switched
it out. I turned it off, and when we
turned it on again, NOTHING! All we heard was a little pfft, pfft. All
the while Colin is bawling and his sats
are dipping. I had Gene get the S/T and
we put him on that, and he calmed right down and slept well.
I was just on the phone with our DME.
They will bring us a loaner bipap (hopefully
a RESMED VPAP). Since we (insurance) JUST had the Knightstar repaired,
to the tune of over $500, they have to check to see if the repair
is under warranty. Of course, at this
point, I don't even WANT this darn old
bipap, so I'm going to pursue getting a RESMED. Sigh. If we didn't
have the S/T (our DME GAVE it to us,
but insurance doesn't know we have it) we
would have had to make a 911 call. Colin
was up in the middle of the night talking and wanting to play. It was
funny listening to him and Terry
"go at it." She tell him, "I have to go and
get Casey's food, I'll be right back." As soon as her foot left
the room, he'd cry! As soon as
her foot entered the room, he'd stop!! Finally at
5 something this morning, she put on some Pooh Halloween movies for
He's been up since
then. He's in TV School right now, on bipap.
I'll update on my dad
later...I have two school meetings to go to this morning.
I've been washing
clothes, and spit cloths, catheters and blankets, bipap masks
and cough assist masks and trach adapters for the cough assist. I've
been spraying Lysol. I've been taking
vitamins and Airborne, making sure the
boys have extra, extra water. We're all sick! Poor Casey was
"declared sick" by me
last evening. He has lots and lots of secretions, some colored yellow.
His numbers are fine. Terry did do a coughing set with him last
night in the middle of the night. Colin
is still sick, but, I think, on the mend.
He must have the biggest sinus cavities in a four-year-old. His sats
were 100% and his heart rate in the
one-teens when I coughed him this morning.
He had tons, and tons, and tons of secretions. Some were a bit tinged
red. His numbers didn't waiver!
Casey had an
appointment for a hair cut today, and we decided to keep it.
And, he's had a little eczema-like rash
on his wrist so I called the doctor and
he said to come over. Gene was STILL home because he felt cruddy, so
he decided to go with Julie and
Casey. Casey was prescribed some cortisone cream
for his wrist. Dr. DiMichele decided to give him a flu shot right
then. Since he didn't have a fever, he
said it was okay. I thought this was
weird since earlier in the week I was talking with his nurse, and she
said Dr. D wanted to wait until more
towards the end of October since the "split"
vaccine that's given to kids doesn't last as long and he wanted his
patients to be covered as long into the
flu season as they could. (does that
make sense how I wrote that?). Anyway, he's done--complete with
Spiderman band aid. Dr. D. listened to
his lungs and said he sounded great.
I'm really glad that
Gene decided to go with Julie and Casey. Sometimes Julie
takes Casey out on her own, mostly in Milton, but they have gone out
of town. Well, Gene pulled into the
parking lot of the hair place and the van
was on fire! Right underneath the drivers seat, smoke started and then
flames!!! Julie asked Gene if we had a
fire extinguisher (which we do, but it
was way in the back). Julie managed to put the fire out and get Casey
out of his tie downs at the same time
while Gene came around to the doors. Pretty
scary! Julie said I would have been screaming! As best as Gene can
figure, some wire must have gotten worn
down and then shorted out by one of the
tie down straps. They made it home (after the haircut) and Gene
unhooked everything electrical and will
deal with it later.
My dad is STILL in
the hospital. Long story short, he had an IV that infiltrated.
They didn't treat it right away, so it stayed puffy and then they
finally did something about it. He had been complaining that his leg
was VERY painful where they took the
veins out. Well, it was infected! He's
been on more antibiotics, as well as those leg wrap things and elevating
it and they finally are starting to work. He's still walking like
he should but getting up is a
"10" for pain he says. He's in now until Monday.
Aunt Chris is still coming home on Saturday. Mom will go to their
friends house and stay with them until
dad comes home. They have VNA nursing
for him for 2 weeks. They also have a service set up that will do
anything they need, like cook meals,
shop, bring mom to appointments, etc.
Oh, the boys are off
today and Friday, for teachers convention, so Casey isn't
missing any school. We have to work on a book report and a current
events presentation this weekend.
Here's a photo today of Casey and Julie
taken today. Casey doesn't look
too sick, does he! It was Julie's birthday today so I made her
"Sour Cream Fruit
Salad". Sounds weird but it's delicious and it's what she requested.
Happy Birthday, Julie
and Happy Birthday, too, to Aunt Peggy (Gene's little sister).
Okay, so now our portable suction went up in
smoke! We just brought the boys into their sleeping room. Gene plugged
the cordy thing into the DeVilbis suction unit and a few seconds
later, I swear, the two lights started going on
and off and then puff, and an electrical
smell. Gene quickly unplugged it. Not sure what is up with that!
Maybe someone dropped it, or got water on it?? Luckily, we have two
plugs so we are fine, but what else can blow up
doctor was just here to check out Casey.
I had asked him if he would have the on-call doc call in a
script for us this weekend, if need be.
He had just seen him yesterday, but he wanted to see him again.
Casey has had lots of secretions and some yellowish stuff, too.
So he came out and said his lungs really sounded fine (at this
second, anyway) but I told him we were using the cough machine every
20 minutes or so this morning. He
checked out his ears and saw a significant change from yesterday.
Yesterday he had his normal fluid, but today he had more fluid
than his norm and it was a pool of yellow, he said.
So, he’s called in Zithromax for us.
He said it would help his ears as well as any respiratory stuff
that may be brewing.
checked out Colin, too. He
felt Colin was doing well, and looked great!
His lungs were perfect and his sats and hear rate were perfect.
Usually, when Dr. D comes, Colin stresses out and high heart
rates! I guess he’s
growing up! His ears were
that’s where we are this evening.
I’ve got Colin tonight.
Julie will have Casey, so Casey will get special attention from
boys are doing well. Casey
seems to be on the upswing. He
was probably at his worst Friday evening.
He’s been on Zithromax, which really seems to be working.
Colin is just about back to normal.
Chris came back from Florida on Saturday.
The boys were excited to see her.
She brought them back some goodies, of course.
She brought them the DVDs Robots and Sesame Street Halloween.
Casey also got a navy blue T-shirt with whales on it and Colin
got Spiderman boxers (his first pair!).
She also brought them a Mr. Potato Head pumpkin kit. There are plastic face pieces that you just stick in the
pumpkin instead of carving it. We
certainly have enough pumpkins to experiment with!
She brought me a pretty Halloween frame.
Julia, from Ohio, sent some goodies to Grandma’s house.
We got them today. Aunt
Chris and I each got a cloth, hand sewn little purse.
Aunt Chris’s had four cute little hand made kittens in hers!
We also each got a “turkey butt” magnet she made from
plastic canvas. The boys
each got a cute, cute, cute, knitted camouflage hat! Colin’s has earflaps and ties under his chin.
They look adorable! They
also got some cute (yes, bats can be cute) felt bats that Julia made.
Gene got a dishcloth and a matching bag for plastic bags (he
loves that stuff).
night I stayed up until Terry came at midnight.
I had taken a nap so I let Gene go to bed early.
We are usually opposite, but he felt pretty cruddy.
Both boys fell asleep early.
I just put away clothes and straightened up and watched some
Colin got up EARLY. I brought him out into the yellow room at
about 6:45 and tried to go back to sleep, but no go. Casey slept
in to about 9 and then just relaxed and had his Teddy Ruxpin for a
while. I ended up taking an early nap myself while Gene
entertained Colin and Sue was with Casey.
anyone have an SMA Angel that has some connection to monkeys??
Actually, it doesn’t have to be an SMA Angel, it could be any
angel at all, when I think about it.
Colin has been a little ‘distracted’ lately.
Whether he’s in school, or watching TV, or reading book,
whatever, once in a while he’ll look up and away from everyone and
make his monkey noises and ‘talk’ to someone.
He’s not anxious or anything—he’s happy when he’s doing
just have a sense that he’s really ‘seeing’ someone or sensing
Of course, I thought of an SMA Angel.
I know Nathan loved Tigger and sometimes sends signs as butterflies,
and Jacob sends signs as rabbits and of course he was called “baby
Anyone have/know anyone associated with monkeys???
for all your replies to my "weirdest question in the
world". I’ll certainly be having a chat with Colin to see
if I can find out if it’s Andrea’s friend or Nathan M. here with
I just got a phone call from our hospital.
A newly diagnosed family is on the peds floor with a four month
old type 1 baby.
I’m going to see them on Friday.
I think the baby is having surgery on Thursday, I imagine a
They want to talk, and find out “how I do it.”
What do you say to a question like that?
Of course, I’ll mention SMA Support (and give them a
brochure) and the different organizations and bipap/trach/palliative
But I have a sense they need some emotional “how do you do
I will bring photos of my guys and some of other kids that I
I have a Believe in Miracles bracelet I will give them.
And, I’ll give them MJ’s B4SMA card, and a Cole’s Quilt
I know they live in upstate NY, somewhere in the boonies and
are having trouble getting services.
I’ll find out if they have a computer.
I’m meeting, briefly, with the social worker at the hospital
that we know before we meet.
Can you think of anything I can say/do??
Okay, so I've been neglecting
my updates again! I really hate when I do that. I will
miss remembering what has happened these past couple of
is in Florida helping out my parents.
Long story, but he took a flight out yesterday afternoon.
He got to their house in Sarasota at 1AM. Today
he brought Dad to some doctor’s appointments.
His infection in his leg is FINALLY almost cleared up.
He should be able to drive but Gene drove today.
I think Gene will bring him on a ‘trial’ run somewhere.
He also brought them to their ‘hair dresser’ and to the
He helped Dad make dinner.
I think it will be good for them to have him there.
Of course, he’s helpful, but they will still try to entertain
and treat him like a guest, so it may help get them out of their funk
and back into the groove again.
Gene will enjoy himself, also.
It’s going to be in the 80s all week!
He was in the spa and the pool today.
did something to my neck/back/arm.
I think it was from raking over the weekend.
I’m going to go to my chiropractor tomorrow.
It’s been tough carrying Casey and Colin, but you got to do
what you have to do!
really think our ‘angel’ is a prankster.
The other night I was doing Colin’s cough machine in his bed
in the wish room.
I put some saline drops in his nose, did a round, suction, etc.
I went to grab the saline vial and it was missing!
Colin laughed and laughed while I looked for it.
I checked under his pillows, his spit cloths, in his pjs, on
the floor, the cracks of the bed, etc.
It was GONE!
I didn’t even move a step and it was nowhere to be found!
Gene looked and looked too.
I know I used it because I had the top of the vial…Then, Gene
noticed that the suction wasn’t sounding very strong.
He noticed it wasn’t plugged in (I really thought I HAD
plugged it in but that’s not the weird part).
He plugged the end into the suction and the lights didn’t
He checked all the connections.
He plugged it into the wall instead of the strip.
And, this is the one that just went up in smoke on us and was
replaced, so it’s new!
He went into the living room to get the other charger and when
he came back—the suction lights were on and it was charging!!
had a sub for school the other day.
We’ve known her for a while and she worked with Colin in the
beginning of the year before we had Shannon, and she also works with
Casey, so she knows us well.
I was listening to them the other day during class.
Colin was doing his monkey noises.
She said to Colin, “what are you looking at?
What’s so funny!
Do you see a monkey??”
She had no idea that we’ve been suspecting that we’ve had a
heavenly angel with us.
night, Colin woke up at 3:30 AM.
Nurse Terry was doing something to Casey and Colin woke up and
gave her a hard time.
He was awake the whole rest of the night, laughing, talking and
making monkey noises!
I heard Terry ask him what he was looking at, too, and I
hadn’t said a word to her, either!
spent a couple of hours yesterday at the Bake Sale for Casey’s team.
It was a lot of fun.
The kids come and help, too.
Casey came for about half an hour.
He had a button on his DynaVox that said, “Everything is 25
It was cool.
we also had a meeting at school with the nurses and Casey’s CF and
Meagan (his case manager and special educator).
It was a great meeting.
We are going to try to cut back on some of the verbal cueing
and stimulation that Casey gets at school.
We think it may be too much for him, which is why he yells so
Priscilla (CF) will point to his DynaVox and have him tell her
what he wants instead of trying to reason with him and ask him to be
quiet, and asking him if he has something to say.
And, the classroom teachers will now give him a verbal warning
and show him a card as a warning.
Then, if he still continues with the same behavior, he will get
a yellow card and have to ‘color a yellow’ for the day.
If he comes home with a yellow, he only gets ˝ hour of
A GREEN gets him unlimited time.
A RED gets him NONE.
see the newly diagnosed baby until next week.
The peds nurse called and left me a message telling me that the
baby was discharged as he was doing well, and was coming back for
g-tube surgery next week. The
family has friends coming in from out of town to meet the baby and
didn’t want to stay in the hospital any longer.
I hope to see them next week.
I am going to try to find out if he is getting a nissen as
well, and give my two cents on the whole reflux thing.
Not sure if I’ll get to do that but I’ll see.
looking forward to hosting Mr. Bear.
I hope he’ll have a chance to go to school with Casey as well
as spend Thanksgiving with us.
and prayers going out to everyone!
out prayers for everyone, especially the sick ones, Ethan, Erinne,
Olivia, MJ, and Annah.
threw up twice this afternoon/evening. The first time was quite a bit
of food and secretions.
The second time was mostly yucky secretions.
I’ve been trying a different diet with him and I don’t
think he likes it!
I probably should have started it slowly but I went full force
and changed a lot at once.
And, he ended up getting orange/tangerine juice because
that’s what we had…He’s had it before and done okay, but I
wonder if that was bugging him.
Plus, he’s getting some Safflower oil and I started him with
a teaspoon right away instead of working up to it.
So, I think we’ll go back to what we were doing before, get
settled again, and maybe start SLOWER with the new diet.
He’s also been having higher heart rates these past few days,
lots of bipap air, and needing more bipap, too.
So back to what we know works!
went to see the new Harry Potter movie this afternoon.
He went via the SSTA, (special services transportation) with a
nurse. It’s only a
dollar each way, which is even cheaper than gas for the van!
Anyway, the van is not inspected and we’re having lift
issues, so this worked out well.
They met Nurse Terry there.
Aunt Chris was able to meet them, too.
She works close by and finished her parent/teacher conferences
early. He really enjoyed
it. I hope he doesn’t
get nightmares from it. It’s
PG-13 so I was a little nervous sending him.
He did hear the book on CD.
Anyway, they had a blast!
getting some nasty winter weather here.
Aunt Chris brought her PJs with her and is staying the night.
We’re all hunkered down for a nice winter evening.
Mr. Bear should arrive tomorrow!
next several entries will be by Mr. Bear!! Click
here for ALL of Mr. Bear's adventures and pictures of him with
I was hoping for a nice rest while I traveled up north, (James is a
BUSY guy) but those UPS workers sent me on a perilous trip! I made it
arrived at the O'Neills in Milton Vermont around noon time. OHHHH,
it's cold up here! There's snow on the ground, too. The boys were home
since it was school break time.
was very happy to see me! Colin was a little unsure at first but then
he warmed up to me. We mostly just hung around and got to know each
and Gene are the parents and Casey and Colin are brothers who are 8
and 4. They also have a dog named Sasha and a cat named Sister. Gene
warned me to stay away from Sasha because she has been known to love
to snack on stuffed bears.
is Thanksgiving! We got to watch the famous Macy's Thanksgiving Day
parade in our pajamas!
Casey lent me his friend Teddy Ruxpin's pajamas while I am here. We
loved watching all the floats. We especially loved Sponge Bob, Big
Bird, and Chicken Little. SANTA CLAUS was on a float at the end of the
parade!! Aunt Chris came over early because the weather was supposed
to be stormy and she wanted to make sure she could get here. After we
got dressed for the day, we played some board games.
played Candy Land and the Disney version of Sorry. Gene went and
picked up Grandma and Grandpa O'Neill. The house smelled sooo good!
Lots of cooking going on!
got to sit at the table with everyone and we all talked and talked and
laughed. It's nice to be part of such a cool family. Casey and Colin
each made a project telling what they were thankful for. They both
included me, Mr. Bear, on their list of things to be thankful for!
also watched Madagascar. This was the second time I got to see it
because I got to watch it with James in South Carolina!! Sue and Gene
let us stay up until 8:30 so we could watch A Charlie Brown
one wanted to fall asleep because we had such a good day and didn't
want it to end!
had a pretty quiet day today. I got to play computer with the boys and
Nurse Nancy Lanza. Casey and Colin love to play computer games and now
I do, too!
highlight was going to the movie theater to see Chicken Little! It was
funny! We all laughed and laughed! I think EVERYone should go see this
is a quiet day around here. Casey likes to sleep in. When he got up we
listened to Teddy Ruxpin. Then we watched Madagascar in bed! Sue went
out shopping so I stayed home with the boys and Gene. Sundays everyone
has to get things ready for school. I had to get ready, too, as I am
going to 3rd grade with Casey tomorrow!
was so excited he wouldn't go to sleep. Colin conked out pretty
quickly but Casey just kept talking and talking. I had to work my
magic with him and I finally snuggled him to sleep! Oh, Sue
picked up some treasures for me. I have a special Vermont Key
Chain, Vermont pencil and some pretty picture postcards so I will
always remember my time with the O'Neills.
grade is terrific! Priscilla (Casey's communication
facilitator) programmed a button on Casey's DynaVox so he could tell
the class all about me. The kids are all very nice and
interested in me. They learn a lot of stuff in 3rd grade!
really enjoyed hanging out with Casey and seeing him talk on his
DynaVox. I also liked driving through the halls in his power
doesn't go too fast so I wasn't so scared. There's
always something going on in Casey's class and lots of kids to talk
to. Riding the school bus was an experience, too!
we got home from school we got to relax and watch TV. Casey has
to go to bed early during the school week and I understand why!
had to say good-bye to Casey this morning. I hugged him and then
watched him get on the bus while waving to him from the kitchen
window. I watched a little bit of Sesame Street with Colin and
then I had to hug him and say good-bye. It was sad, but I look
forward to meeting another cool family!! Tomorrow I start my
journey to the Pruitts in Kentucky! It was nice visiting Vermont
and meeting the O'Neills but I know I will enjoy myself with the
all have very sad hearts today. Here is an email from Morgan's
(SMA type 2, 3-years-old) mom. We were privileged to meet Morgan
and her family at the SMA Gathering in VA Beach this past
Dear Friends and
It is with four
very heavy hearts that we are telling you that Morgan earned her
angel wings last night.
She was the
happiest, smartest, and most vibrant little girl we have
ever known. The PICU doctors at CHKD did everything they could to
keep her alive.
Thank each and
everyone of you for your support and prayers.
All of our
Zeke & Clayton
SMASupport has a
guestbook where so many people that were touched by Morgan have left
messages and posted pictures of her ~ please visit this beautiful
tribute to Morgan http://www.smasupport.com/guestbook/
I forgot. Colin got his new
stroller the other day. It's not fitted to him
yet, but here he is in it for the first time! And,
the other morning we stuck him in Casey's wheel chair. It's so weird
to see him sitting up without his bipap. Usually, he can't do it
but first thing in the morning he can sit up
without choking. We usually sit together
in the morning so he can enjoy being upright without
This is the second year we've
brought the boys to the St. Mike's Christmas
Party for Alumni. Both Gene and I graduated from there. Anyway,
we had a good time. Don't cringe when you see Colin on Santa's lap--we
threw all caution to the wind! The boys enjoyed the Christmas skit,
the crafts and, of course, SANTA!!
Colin was SUPPOSED to
help me make cookies, but he was NOT
interested. I guess I really can't blame him! Anyway, I did take
pictures of him posing by the tree. He has a Santa hat on, but I just
realized it looks like he just has a white fur hat on! Anyway, they're
kind of cute. I'll post them on the site
Mom and Dad arrived
today! Aunt Chris picked them up late in the afternoon and they
came right over. I had made meatloaf, mashed potatoes, peas,
carrots and home-made wheat bread for dinner. Dad looks good,
but skinny. It's weird seeing him that way! I also made
some rice pudding with raisins for dessert, in hopes of putting some
"good stuff" in him! Gene didn't go to work
today. We shopped for a bit at Hannaford's together. I am
always amazed at what a pain in the butt he is to shop with! We
wanted some peppermint stick ice-cream so we asked the person stocking
if they had some. YUM, they did! I also punched in some
photos to be printed at Kinney's of Colin and Casey with the reindeer
and sleigh from Gramps. Gene picked them up for me later
We tried to have both boys sit
with us at dinner but Colin was a grump! As soon as we put him
in his new Easy S stroller, he had a fit! Gene ended up sitting
with him by the TV while we all sat at the table and talked and had
We had a hectic evening.
Mom and Dad were still here, Colin was a grump, Casey had tons of
secretions and it was time for bed. Colin went through 3 sets of
pajamas. The port on his tube kept opening up and soaking
him! Casey was breathing REALLY fast and had tons of stuff in
his chest. I ended up using 3 saline bullets and a saline neb to
try to break it up. I got out some little round, yellowy plugs
which is unusual for him. It's probably because he was on his
"nose" since early in the morning. We didn't put him
back on the heated humidifier when he got home since he wanted to stay
in his chair and play computer and then hang out with Grandma and
Grandpa. Anyway, I thought the PEEP valve was malfunctioning so
Gene changed it. It ended up being that one of the sensor
tubings was loose so the vent was auto-cycling. Julie was on for
the night shift, so Colin was with us. He wouldn't go to sleep
for us, so Daddy had to go up and lay with him. Casey was up and
"yelling" until 9:45! Don't know what was up with
him. He should have felt much better after I got all that junk
out of him.
Happy Birthday to my dad! I wonder if he'll be mad if I say
that today he will be 80-years-old!
Nancy Hadd got a huge,
yellowy, plug out of Casey this morning. It must have been
lingering in there for a while. He was in a good mood, and had
slept well, so I think he's fine. Julie checked his ears and
they looked fine, too.
I made Dad a birthday cake
this morning. I made a yellow cake and split the layers so that
I could put a layer of raspberry jam inside. Then I frosted it
with French Vanilla frosting. It should be good! I'm
waiting for mom and dad to come over now. I'm a little
bored. I didn't want to take my nap since I wasn't sure when
they were coming over. Gene went to his parents to pick up Avon
and give his mom a check. He ended up getting a physical therapy
treatment for his shoulder as he dropped off a check for Sylvia and
she had a cancellation. It's snowing pretty good right
now. It's pretty, but the visibility looks like it might be
getting a little poor. The squalls are supposed to end
shortly. Oh, Gene brought over a tin of my raspberry all-spice
cookies, milk chocolate and white chocolate covered pretzels and some
fancy mints to Bill Lambert across the way. I also sent a tin of
goodies with Julie for Gramps, as a thank you for giving the boys the
Both boys were out like lights
tonight! They were both asleep by 7:50 PM! I got some more
yucky stuff out of Casey with the IN/EX. Hopefully, that's the
last of it. Colin has had a high heart rate most of the
day. His sats have been perfect. Gene checked his balloon
on his G-tube and found that it only had 2cc of water instead of 5cc
so he re-did the balloon.
We've had a wonderful couple
of days! Christmas Eve day, both boys had their hair cut
here. Kris came over to do the cuts. They were both pretty
funny. Colin wanted her to stay and do more! Then, I gave
Casey a shower and then Nancy L gave Colin one. Aunt Chris was
over for a bit and brought us lunch. Yum. Then we had to
hurry and get dressed and set the table and get straightened up for
Grandma and Grandpa O'Neill's visit.
had a nice, nice Christmas-time.
It wasn’t too crazy, which is always a bonus!
Mom and Dad spent a lot of time with us, and the boys, at our
We also went out to lunch a bunch of times and did some
I have to say, my dad is a much more fun shopper than Gene.
Gene ‘dogs’ my heels and makes it not very fun to browse
Dad bought me a pair of corduroy pants and a velour
‘hoodie’ that HE spotted in Filene’s.
Okay, so Gene is a good shopper when I’m not around.
For some reason, he had it in his head that I needed/wanted a
black pearl necklace.
He looked and looked and couldn’t find one, but he did find a
beautiful necklace with pearls
and black onyx and gold beads.
He’s NEVER bombed out in shopping for jewelry—go figure!
Mom and Dad keep saying that we’re going to pare back at
Christmas but they went overboard once again.
I can’t wait to try my new printer/scanner/fax/copier!
I haven’t had a working scanner in ages…And, we love our
new coffee brew station and my sleek, bread box.
The boys got a new portable DVD player.
We had one that lasted two years but finally is breaking down;
the volume is poor and we have to duct tape the cover down to play
That DVD player went on many trips, from Vermont to Florida and
back, Massachusetts many times, and to Virginia Beach!
Mom loves her calendar that I created for her from Kodak
Gallery and Dad loves his sweater that Gene picked out, and the Renee
Flemming, Sacred Songs CD.
Chris is at Bobby (our brother) and Brenda’s house in Virginia.
Caitlin (niece) celebrated her 18th birthday on the
Aunt Chris has not missed one of her birthdays except for the
day she was born when we all visited a couple of days after her birth.
Mom and Dad didn’t go down this year.
Dad is still recovering from his heart surgery and Mom’s
arthritis makes it hard for her to travel.
And, they did both turn 80-years-old this December!
had a bad crash.
Wednesday, I was out with Mom and Dad and Gene was out doing
his own thing.
The boys were home with Nancy L and Nancy R.
Nancy R and Casey were in the “yellow” room-playing
Nancy L and Colin were in the living room hanging out.
She said Colin sounded like he needed to be suctioned, so she
did, but didn’t get anything out.
Then, his SATs started to drop.
She yelled for Nancy.
Between the two of them they suctioned, in/exed, vented his
tubing, delivered oxygen (which we haven’t had to do in over a year)
and got him back up.
His heart rate started going down when he was at his lowest O2
saturation of 32%.
Thank God, he started coming back up.
He started crying, and that’s when they knew he’d be okay.
He was scared for a bit, and rested on bipap.
They called Gene to let him know and he talked to Colin and he
I didn’t find out until I called home from Aunt Chris’s
Mom, Dad and I went home shortly after.
He really is fine, but I’ll be monitoring him for a while to
make sure he didn’t aspirate.
to Christmas…Christmas Eve we had Grandma and Grandpa O’Neill over
for a roast beef and trimmings dinner.
We cooked and ate and chatted and opened gifts.
Grandma and Grandpa LOVED the candles that Casey hand dipped in
Nancy H came at 8 AM to help get the boys ready.
We came out and opened Santa gifts and both boys were VERY
As a joint gift they got a 4 foot high Official Lionel Train
crossing tube bank that makes train noises with lights that flash when
a coin is put into it.
Well, Santa must have had an issue with it, because the lights
We will write him a letter to let him know.
Casey got a super, super fun Arcade-style switch accessible
He played it today (Thursday) for about 3 hours straight!
He can navigate through all the games without ANY help.
There are maze games and racing games and space invader games.
They have different levels and also have a Hall of Fame that
shows his scores!
Colin got a game that he played in Pre-school, Coconut Drop.
It’s a lot like Kerplunk but it’s with a palm tree and
fronds with a monkey on top.
Santa also gave them a bunch of cool computer games like Jimmy
Neutron and Buzz Lightyear that we will play hand over hand with them.
could go on and on about their gifts!
I guess Casey’s favorite is his idog from Aunt Chris.
It’s a little dog that you plug into any headphones jack and
it hears the music and lights up and moves his ears and other cool
He listened for about 12 hours straight on Christmas.
He’d let us turn the music down and he’d converse with us,
but WANTED his DOG ON!
Colin loves his Coconut game and some Disney cars that he got.
AND, he loves his Charlie and the Chocolate Factory DVD and the
Disney Three Musketeers.
on Christmas evening, Peggy (Gene’s little sister) came over.
We did the gift thing and played with the boys and then put
them to bed.
We hung out and talked for a little bit, and then everyone was
Peggy stayed over in our “guest” room for her first time.
In the morning she made us breakfast.
We convinced Gene to go out and get us basket style coffee
filters so we could use the new brew station.
We had OJ, ham, cheese, onion and green pepper omelets, home
fries and toast.
We played with the boys for a while and then she had to go, as
the weather was looking crappy.
more, but this has gotten long enough!
Wondering what anyone has used for breakdown under trach ties,
or any breakdown, I guess.
He had a patch a couple of weeks ago, but I thought it had gone
Now it is red, flakey, wet and dry all at the same time.
He’s having a tubby now, so I’ll look at it better after he
I’ve used Aquaphor and Lanolin and different baby creams for
butt break down and bipap bites, but not sure what to do for this.
nurse was telling us about a girl she takes care of that has toes that
cross and she gets similar patches.
They use a tea tree oil ointment.
I know many of you use the tea tree oil with a mix of water.
Have any of you seen the ointment???
NEW YEAR everyone!
We’re going to try to stay awake tonight.
|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