through April 1, 2006
Colin has had another two Ďdipsí today.
The first was this morning.
I usually take him from bed and have him sit with me at the
computer and look at pictures so he can poop sitting up.
I did that this morning, put him down, did the diaper and then
did other stuff.
When Nancy came she did his cough machine, but she didnít do
his mouth first.
I usually do that after I put him down, and I didnít today.
He does usually not need it a lot in the morning, but he has
lately since itís been so dry.
Well, he must have had stuff in the back of his throat that
plugged him, because he desatted to the high 60s.
I was upstairs.
Gene was downstairs so he helped with the suctioning, cough
Iíve now put the adapters for oxygen back on our cough assist
We never usually need the O2 so Iíve long ago decided they
were more a pain in the butt to have on there because they crack
easily and then leak.
now I was on the computer (5 feet away from Colin) and Nancy was
making formula in the kitchen (10 feet away).
She went over to check him and he was at 90% and going down.
We normally have the alarm set at 90% for low sat.
So we suctioned and put on bipap and he was fine.
Lots of thick stuff blew out.
recently cut him back 2 ounces of water in his formula and added an
ounce of juice so he really isnít getting much less water, but a
tiny bit less.
Maybe thatís the culprit.
Itís been awfully, awfully dry here.
and during TV school, he wanted Ďbapí and then he had tons of gas
and seemed like he needed to throw up.
else is different.
So Iím not sure whatís up!
is going to have his blood drawn on Saturday.
There are two little boys and a Vermont State cop in need of a
bone marrow transplant.
Then heíll be on the National Registry.
Iím not sure of the chances of him being a match for anyone
but just wondering about ďifĒ he is ever a match, what it would be
like for him to give marrow.
Heís heard that heíd be sore for about 6 weeks, and when
they take the marrow itís unpleasant, but thatís all Iíve heard
Our buddy, Payton,
passed away. He was 5 and a half years old.
and Rob and all of Payton's Family and Friends: We wish you strength
and peace. Payton has always been one of our little heroes, and he
will continue to be. Love and hugs, Sue, Gene, Casey and Colin O'Neill
The boys had
a "weather" day today. It technically wasn't a snow
day since it was mostly rain we're getting. I guess the back
roads will be a mess for a while. Lots of high winds,
Colin both played the darn old Sponge Bob, The Movie computer game
today (separately). Casey and I read a couple of chapters from
his Bunny Bonanza book for his book report. Colin played with
his doggie play set and his haunted matchbox house with Nancy Lanza.
Casey listened to his idog and hung out with Nancy Hadd.
is our Memorial for Payton taken Monday evening.
I hate to write that this was our last picture taken of our beloved
Timothy. He earned his wings slightly past noon today. He would have
been 5 in April. I hope he and Payton are playing. I am very numb and
tired. A lot of plans to make."
was the first SMA child we had ever met, after MJ. He has always
been VERY special to me. He and Colin were born only a week
apart. A large chunk of my heart is devoted to Timmy and it
always will be. We love you, Timmy!
"Day Before" Birthday to Casey! Casey turns
9-Years-Old tomorrow! Today we celebrated Casey's birthday.
Of course, Aunt Chris was here and Grandma and Grandpa O'Neill came
over in the afternoon. We had some good munchies and we hung out
and had a good time. I went out in the morning and got Casey's
birthday balloon bouquet. It had a SpongeBob Mylar balloon and
SpongeBob colored regular balloons. I picked out a Mickey Mouse
birthday balloon for Colin. I think Colin really wanted a
SpongeBob one! I made a cake for Casey and cupcakes for school
on Monday. He enjoyed his gifts. he got lots of books and
DVDs which he really enjoys.
Casey got his new seating
system for his power chair today! Julie, Casey and I made it to
New England Medical by 10AM. Pam met us there. It was
a really cool process. Of course, I don't remember what it's
called, but it's basically foam that hardens after it's molded to the
shape of the back of the person. Does that make sense???
It's kind of like the foam that you can use for insulation. It
bubbles up, you can mold it, and then it hardens. Nothing ever
touches the body, as it's all contained in a huge plastic bag.
Once you get the position you want you can cut away the excess
foam. It took a couple of hours but I think it will be awesome
for Casey. He also got a new, more adjustable headrest.
He'll still need to use the head strap, but it cradles the base of his
head/neck way better than his other one.
After the appointment, Julie
and I were starving, so we got some yummy sandwiches from the Bagel
place. Then we went to Big Lots and spent a lot of time shopping
and looking around. Casey seemed to enjoy his outing!
Shannon was back today for
school. Colin was a little ornery and loud during circle time
and got a time out. He had his bipap on, so we took it off and
he was a lot quieter and more attentive. I think he likes how he
sounds when he yells on bipap so he wasn't paying attention to school!
Barb came and we went and paid
the water bill. We went to Brooks for a bit and then to
Zachary's for lunch. Barb treated!
Dave came to put the Dynaform
harness on Colin's Easy S, but it didn't fit properly. Looks
like we're going to have to get one from the company instead of the
one we wanted. Now we have to wait LONGER to have Colin ride in
the van with his new stroller.
Colin and I had a low-key day
today. Colin had a shower and got all spiffed up and I took some
photos of him in his Easy S. We played a little computer.
Tami came for Speech and did some oral motor stuff. Casey got a
GREEN today! He's been getting some reds and yellows. He
was very happy to play computer with Aunt
WE MAY HAVE A SURPRISE TO TELL
Today is Casey's Colonial
Skit! Terry and I are going over right now!
We had a good time watching
the skits. They sure put a lot of work into them. I'm sure
Mrs. Talley and the kids are all relieved it's over! Casey did
"yell" though the beginning of the skit, but not when it was
his turn to say his lines, of course. The kids pretty much
pressed the DynaVox buttons for him as I think they were probably too
nervous to wait for him to scan it himself. They were all good
and looked GREAT! We also enjoyed the Colonial dance
afterwards. Terry and I took some photos but none are too
great. I'll put some up on our site soon. We gave Terry a
tour of the classroom and pointed out some things for her. I
think she was glad to see Casey in his element at school!
Well, the day started off
okay. I didn't sleep very well but I felt pretty okay in the
morning. Later, I started feeling nauseas and I tried to eat
something, but it didn't help! I vomited once, a little
bit. My stomach felt awful and I spent a lot of time in and out
of the bathroom, if you know what I mean! Poor Colin got a
lot of TV! I actually called Gene and asked him to come
home. He came home around 1o'clock or so, and I went right to
bed and slept for a few hours. I felt a lot better when I got
up, but not 100%. I had a little bit to eat and a lot to drink.
We put the boys right to bed at 7PM. (Oh, Nancy Hadd wasn't here
for the evening since she went to school with Casey because Julie is
on vacation.) They fell asleep really quickly. I had a big
bowl of vanilla ice-cream (I know, I know, but it helps me no matter
HOW I am feeling!) and watched Survivor and CSI in bed.
The phone rang right before
6:30 this morning. Sue had a migraine and hadn't slept so she
wasn't coming in to go to school with Casey. I called the bus
and Meagan right away. Unfortunately, Colin saw me when I went
in to talk to Terry and became WIDE awake. I tried to go back to
sleep, but no go. Terry had brought Colin into the Yellow room
to watch TV. I gave him a quick shower and got him ready for
school. Then Casey woke up and I brought him into his room and
got him ready and up in his chair. Then Shannon came for TV
school. Colin was pretty good. They decorated a bag for their
Valentine's cards. Gene hung out with Casey. Then Meagan
came and she installed a switch activated reading program. We
showed Colin how to do it but he wasn't too impressed. The
beginning is basically just matching pictures. But, it a way for
him to practice scanning as well as show us what he knows. She
also installed cross scanner for us. Casey had been
really successful using it in school. He can do point and click
games/programs, and he's getting good at dragging and dropping,
too. We showed Colin a little bit of the cross scanner but the
game we picked was weird and kind of blacked out where the cross
scanning action was. So, he bawled when we exited the games but
I really wanted to give Casey a turn. I set him up with his
switch arcade games. He did that for a while and then he wanted
to show me how he can cross scan. Of course, couldn't get
it to work right, so we got frustrated and I put in some living books
for him instead. I set up his DynaVox for him, too, and he told
us the date and said hi to all of us, etc. It was kind of funny
because the first thing he said was, "Hi, nurses!" and of
course there ARE NO nurses here so he was showing us his sense of
brought the boys to see Curious George this morning. An online
Autism support group organized a special showing to include all
special needs kids. Colin has been loving the previews, so he
was excited! Casey kept telling us he didn't want to go,
but I insisted that he go and told him he'd end up liking it.
Well, he sure got me! He was good while we waited and he was
good for the previews, but then he was "yelling" some (which
really wasn't a problem because one of the conditions of the showing
was a "tolerant audience", along with lower volume, and dim
lights) but we tried to get him to be patient and respectful.
Well, finally, he just started bawling! Nancy R took him out and
tried to console him, but it didn't work too well. He said he
wanted to come back in, but he still cried. I went out with him and he
calmed down some and finally watched the end of the movie. I
guess he just knew he didn't want to see it and he knew he normally
gets to sleep in on Saturdays, so I guess he was pissed off at us.
Colin really had a good time! Anyway, Casey is happy now
listening to the latest Harry Potter book on CD. Colin is
snuggling with Daddy.
on the heart to visit our Valentine's Day web page that I created for
weíve had a whirlwind of a day!
Started off fine.
We had our PT, Pam here, as well as our wheelchair guy and a
representative from a company that distributes a bunch of stuff (I
think he may be part of snug seat).
Anyway, they brought out a Gazelle stander to try for Colin.
While they were measuring him, I showed Pam how his new AFO
didnítí fit well.
We had them casted a couple of months ago.
We loved the left one, but the right one didnít seem right.
We sent back the right one and Pam asked for some changes.
Got it back, and I THINK I tried it on and it fit okay.
I canít remember anymore.
Anyway, I didnít think he needed to wear them because the
range in his ankles is really good and he moves his feet around a lot
and I donít want to hinder that.
He was going to wear the AFOs for standing purposes.
Anyway, the other day I thought it felt like his range wasnít
good in one of his ankles, so I was freaking out.
I decided to have him start wearing the AFOs.
The left fit like a glove.
I could barely fit his foot into the right one and there was no
way I could leave it on him.
I knew Pam was
coming so I decided to show her then.
she saw how they didnít fit well.
We asked Colin if it was okay if he could just wear them while
he was standing and he said ďokayĒ.
We got him in the stander and I LIKE IT VERY MUCH!!
So much nicer than the Tumbleforms Tristander that he had
A Prone, Supine and
Upright stander for children from 1 to 14 years of age. This 3-way
stander is a great choice for children whose final standing position
has not been determined. Available in three sizes, the Gazelle P/S
comes standard with reversible footrests and knee supports that
convert the unit from Prone to Upright to Supine.
innovations found only on the Gazelle P/S are the leg abduction
feature and our lower leg adjustment brackets. The independent leg
abduction system allows the femoral head to be angled towards the
acetabulum (essential for children under age 7). The optional lower
leg adjustment brackets allow the unit to be used for children with
knee contractures up to 30į"
thing is that it comes with different headrest option!
There is one that is perfect to scoop and hold Colinís
got him looking good (will send photo later) but he was BAWLING!!
He was on bipap but his heart rate went up to the 190s, at one
point, because he was so pissed, and/or maybe in pain.
Pam really looked and looked at his foot.
Itís about 2 times the size of the other foot and warm.
She also saw the decreased range of motion in the right one.
She wanted me to show DR. DiMichelle.
Long story, but Iím without a nurse, but Nancy Lanza came by
to visit Colin, so he wouldnít forget her, so she was able to help
me throw Colin in the van and bring him over to the doc.
He had only been doing well baby checks and physicals, so no
real sickies have been there since yesterday so we had to chance it
(heís going to Guatamala tomorrow to do a missionary thing for the
next 3 weeks).
Dr DiMichelle was concerned and wants BLOODWORK and X-rays.
He wants the bloodwork to rule out osteomyelitis, which is:
is infection of the bone, usually by a pus-forming bacteria. All
bacterial osteomyelitis starts as acute infection. If untreated or
unsuccessfully treated after 6 weeks, by definition, it becomes
is caused by bacteria, which enters the bone by injury (as by a sharp
object or open fracture) or by the blood stream ( which is the more
common mode of entry in children). In the discussion that follows, we
will confine ourselves to infection from the blood stream - the
responsible bacteria differs in different age groups. In the neonate,
the bacteria is usually Hemophilus
influenzae. In older infants and children, it is often
Staphylococcus aureus. The site of infection could be anywhere in the
body, but most commonly in the metaphysis of long bones. The
metaphysis of the long bone is that part of the body next to the
growth area (or the epiphysis at either end of the long bone). So
osteomyelitis tends to occur near the joints of the limbs.
are the symptoms?
child presents with acute pain near a major joint of the limb ,
associated with high fever. The typical patient looks sick. Blood
tests often show elevated white blood cell count as well as high
sedimentation rate and C-reactive protein. The high sedimentation rate
and C-reactive protein indicates the body response to acute
inflammation, and follow-up tests are good indicators of the
progression of the disease and response to treatment. Blood culture is
done to identify the responsible bacteria. Local aspiration of the
site is also sometimes useful to identify the bacteria involved.
X-rays are usually normal in the first 5 to 7days, until the
periosteum (covering of the bone) is elevated by
swelling or pus formation, when X-ray changes occur.
hasnít had a fever, but his heart rate has been up at times and
heís been grumpy at times, too.
will be going tomorrow for the blood draw and X-rays.
Gene will have to take work off to go with me.
us good luck!
More O'Neill News:
news is that our nutritionist is happy (thus Dr. D., too) with
Colinís diet which includes 1 pack Vivonex and 1 pack Tolerex.
I have, in my hands, a script for Tolerex!!
Yay!! Thank you to
everyone who has sent me Tolerex in the past!!
I was hoping to help others out with the Tolerex, but for now,
I just have a pack a day script.
has had blood coming out of his trach.
(Nurse Julie had to suction his trach at school once
today-sometimes we donít even do it once, but in the winters we do.
Otherwise we NEVER have to put a catheter down him because it
comes up with saline and some in/exing.)
This is SO not normal for him.
He has had more pluggy stuff coming out, and itís sometimes
yellowy, and SOMEtimes a bit of dried brownish old blood, but today
heís had fresh blood. Itís
freaking me out! Iím
sure itís just dryness (right???)
His humidifier wasnít turned on from 4PM until 2AM last night
(bad ooops). We just did
some saline nebs and I donít hear anything in him so Iím not going
to in/ex him until tonight.
noticed a couple of tiny, tiny sties on Casey lower, inner lid.
We havenít had to deal with them in long time!
We have some erythromycin ointment that weíre supposed to
start when we first see them, so heís had his first application.
decompressing with computer timeÖ)
had a treat the other night. For
his birthday, Julie wanted to ďdo somethingĒ with him.
We heard about a GospelFest in Burlington, so she got tickets
for Casey, herself and Aunt Chris!
Casey loves gospel music!
When we put on the Black history channel, or The Sunday Gospel
hour, and he sings away! He
loves when they dance and sway and sing!
(Heís not too crazy about the sermonsÖ)
They only stayed for half the program since it was 3 hours long
and there was school the next day.
They all had a good time and are already planning on going next
Colin's tests went
well today. First we did
the X-rays. They were
very nice and efficient. The
lab is in the new part of our hospital and itís way easier to get to
and the lay out is very well thought out.
Then we went to the lab, also in the new part of the hospital.
We told them what a tough stick he was, so they called down an
IV nurse and put us in a room. They
warmed up his arms and feet. She
took a lot of time getting prepared but it was worth the wait!
She got him on one stick!
called the docs office this afternoon, and of course, they werenít
aware that they should be looking for his info (our doc is away).
I got thru to a different docs office and the nurse was going
to leave a note for the doc (he was coming in this evening) and of
course, I havenít heard yet.
pursue it in the morning. His
foot seems okay, still puffy and very little range.
from Dr D's office had the info sent up to St. Alban's. Dr.
Holmes will be in later and read the results and call. For now,
was restless early on in the night. I came down and snuggled and
had Terry give him Ibuprofen. He slept well after
is Casey's last day of school before break. We decided not to
send him tomorrow, for several different reasons. He's bringing
his power chair and DynaVox home today. He's off now until March
Chris goes to Florida on Saturday. And last night was Terry's
last night until mid-March! It's going to be a busy 3
weeks! Chris just called. She didn't go to school.
She is nauseous and feels awful. She's slept all morning.
I hope she's better when she boards the airplane at 6:30 Saturday
doc from St. Alban's called. Everything
The x-rays showed no abnormalities (aside from not bearing much
They noted some swelling, but all is well with the bones.
The blood work was fine, too.
White blood cell count was normal, as well as the other
testsóblank, blank protein (inflammation going on), and whatever the
other ones were!
So, we are assuming itís a soft tissue injury that will get
better and better each day.
Weíve elevating it and Iíve been giving him Ibuprofen as
|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