January 1, 2006 to
March 31, 2006
Colin has had another two ‘dips’ 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 didn’t do
his mouth first.
I usually do that after I put him down, and I didn’t today.
He does usually not need it a lot in the morning, but he has
lately since it’s 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
I’ve now put the adapters for oxygen back on our cough assist
We never usually need the O2 so I’ve 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 isn’t getting much less water, but a
tiny bit less.
Maybe that’s the culprit.
It’s been awfully, awfully dry here.
and during TV school, he wanted ‘bap’ and then he had tons of gas
and seemed like he needed to throw up.
else is different.
So I’m not sure what’s 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 he’ll be on the National Registry.
I’m not sure of the chances of him being a match for anyone
but just wondering about “if” he is ever a match, what it would be
like for him to give marrow.
He’s heard that he’d be sore for about 6 weeks, and when
they take the marrow it’s unpleasant, but that’s all I’ve 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
we’ve 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
didn’t’ fit well.
We had them casted a couple of months ago.
We loved the left one, but the right one didn’t 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 can’t remember anymore.
Anyway, I didn’t 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 don’t 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 wasn’t
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 didn’t fit well.
We asked Colin if it was okay if he could just wear them while
he was standing and he said “okay”.
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 30°"
thing is that it comes with different headrest option!
There is one that is perfect to scoop and hold Colin’s
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.
It’s 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 I’m without a nurse, but Nancy Lanza came by
to visit Colin, so he wouldn’t 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
(he’s 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.
hasn’t had a fever, but his heart rate has been up at times and
he’s 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
Colin’s 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 don’t 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 it’s sometimes
yellowy, and SOMEtimes a bit of dried brownish old blood, but today
he’s had fresh blood. It’s
freaking me out! I’m
sure it’s just dryness (right???)
His humidifier wasn’t turned on from 4PM until 2AM last night
(bad ooops). We just did
some saline nebs and I don’t hear anything in him so I’m not going
to in/ex him until tonight.
noticed a couple of tiny, tiny sties on Casey lower, inner lid.
We haven’t had to deal with them in long time!
We have some erythromycin ointment that we’re supposed to
start when we first see them, so he’s had his first application.
decompressing with computer time…)
had a treat the other night. For
his birthday, Julie wanted to “do something” 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!
(He’s not too crazy about the sermons…)
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 it’s 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 weren’t
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 haven’t 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
tests—blank, blank protein (inflammation going on), and whatever the
other ones were!
So, we are assuming it’s a soft tissue injury that will get
better and better each day.
We’ve elevating it and I’ve been giving him Ibuprofen as
kept Casey home from school today.
It was the day before vacation and he doesn’t always do so
well when things are “different” and today was going to be an odd
day. Nurse Sue was here
for Colin so I got to concentrate on being with my first child!
We had a great day. He
went thru his whole DynaVox repertoire and we changed some buttons and
added some, too. Aunt
Chris is sick, so I programmed a button so he could ask her if she was
feeling better and held it up to the phone.
He played tons of his single switch games.
I am so proud of him! He
got to Level 4 of the Space Invaders game all by himself!
My Casey can do such amazing things just with the movement of
his thumb! We also
got Pix Writer downloaded onto our computer so we played around with
that. It’s a program
where Casey can scan thru and pick out words matched with pictures to
create sentences. You can
add your own pictures and stuff like that.
He’s really good at it!
He also listened to some Cat Stevens with me.
We snuggled in bed and I read a couple of chapters of A Series
of Unfortunate Events to him. We
also worked on his Power Point Presentation for his school project.
He already completed his Poem assignment and presented a Shel
Sivlerstein poem to the class on his Step by Step yesterday.
We have his power chair here, but we didn’t get a chance to
do that today—hopefully tomorrow!
now the boys are chillin’ and watching the new Sponge Bob episode.
my “guys” couldn’t get me Casey’s normal Shiley 5.5 trach this
month. They got us a
Bivona in his same size. It
looks a bit different as it has this flex thingy on the outside.
We change him out in about a week.
else tried these???
our pulmomologist wants us to have Casey’s trach “sized”.
We have an appointment with an ENT.
We went to this guy once about 7 years ago.
He really didn’t have anything to offer us so we’ve never gone
have a clue about how he may “measure” Casey’s trach?
We had a bronch done a year or so ago and he was clean as a
Casey has been low pressuring more and he’s been on the same vent
settings and the same trach size for YEARS.
am going to call and ask about what they will be doing, but of course, I
forgot to do that today.
think Colin’s foot is way better.
Yesterday I put on his AFOs and they fit pretty well and he
tolerated them fine.
Today, I did the same, and it fit even better, so I’d say the
swelling is just about gone.
We’ll never know what happened, but he seems to be better.
and Casey’s sties are just about gone, too.
The erythromycin ointment did the trick!
it was just the boys and Gene and I.
Nurse Sue got married yesterday so she took today off.
She and Carl have been together forever and just did the Justice of
the Peace thing to finally make it legal (second marriage for both).
Gene and I had fun doing things with the boys and doing a little
straightening and cleaning.
Grandma and Grandpa O’Neill came up for a little while.
Grandma had fun wheeling Colin around in his new stroller.
I finally put his battery and power strip on the kart.
We now have the H-belt so that he can be strapped in while in a
NOW, to see if it fits in our van with Casey’s manual chair!
The size 2 Easy S is a pretty big “kart”!
I have two nurses (the boys are on vacation so Casey will be home) so I am
going to take advantage of it and GO OUT!!
I’ll have Nurses Sue and Julie here so the boys will be in very
I’m going to try to get my haircut for the first time since the
beginning of August, YES, AUGUST.
Most places are closed on Mondays so we’ll see.
may peruse some toy stores and the Christmas Tree shop and who knows where
and Kevin visited us this afternoon! Jessi (20 years old, lives and goes
to college in Ohio) and Kevin had some time off and Jessi wanted to show Kevin
Vermont and to meet some of her family.
received our SMA Chat Valentine's today. They were late this year, for
several reasons, but no one has seemed to mind! It's always fun getting
mail! Lots of creative Valentine cards this year, and lots of pictures of
the kids! Check out the following link to see some of the kids with their
I should wait until I take a picture, but I love my messenger bag that Nurse
Julie picked up when she was in NY this weekend.
It was a whole $3.
I was looking at some from Land’s End and LL Bean that were $60 plus!
I am going out today and will be on the lookout for “O” rings and
some carabineers and then I’ll take a picture.
It will be perfect to hang from Colin's Easy S stroller!
had 3 bad things happen to me today, so I think it’s safe to write about them.
morning, Nurse Nancy L. is back caring for Colin.
She’s been out for about 7 weeks or so with an injury.
She knows Colin really well, so I trust her 90%.
Colin had been up early. The
night nurse and I got him up and changed and we had him in his pooping position,
which is in our laps, sitting up. He
was ‘done’ so I had him on his mattress on the floor like normal.
When Nancy came she got right into everything like normal.
We decided to bring him in to Casey’s room (not where they sleep) to
use his cough assist there. She
brought him in and was coughing him. We
didn’t’ have his pulse ox in there as it was just a quick cough session.
I was getting some stuff ready, just getting ready to go in and hover
like usual, and I hear her yell for me. She
said, “he’s looking funny!” He
was pretty blue. I’m yelling,
“do something”! I always yell
that when I’m running around during critical times.
I grabbed the oxygen, started more suctioning, coughing, etc.
At first he was looking at me and trying to make noises but then his eyes
started getting that far away look. I
told Nancy to run for Gene. (He was
still in bed). He came down,
quickly assessed and gave him a couple of big breaths with his mouth and I heard
a noise that I can’t quite describe…something like a “pop”, shlop, I
can’t quite say, but the plug moved and he made noises and his color started
creeping back in. I grabbed the
cough assist stuff and did him again and a slimy plug came out.
Then, like nothing had happened at all, he started babbling and smiling.
Oh, at some point, someone got a pulse ox and probe, but by that time his
sats were fine and his heart rate was okay, but a bit low.
He spent some time on bipap after that and has been fine since.
on, I went into our cupboard to get a bowl and SMASH—one of our juice glasses
crashed onto the counter and floor!
I put some tuna noodle casserole (from Grandma O) into the microwave.
I took it out and went to stir it and “POP”!
The sauce flew out and I had blobs of it all over my shirt.
If it had reached my face, it would have burned.
So, if bad things really come in 3s, I think the rest of the day will be okay.
having Grandma and Grandpa over for our St. Patty’s Day dinner tonight
we had a good visit with Dr. Hubbel.
We hadn’t seen him for 7 years so I guess it was time!
He didn’t even end up measuring Casey’s trach.
He said since we’ve been having good results with the Shiley to keep it
as it is. His
assistant had spoken with Shiley and they ARE still making the trachs.
They have a lot of backorders but they ARE filling the orders.
He looked at his stoma but that’s about it!
He ended up giving me an extra trach!
We did talk about going up sizes but he said then you have to worry about
the tissue and all that and he seems fine as he is.
That’s all we talked about relating to the trach!
did ask him that since we were there, could he look at Casey’s ears.
Casey has always had chronic fluid and his hearing could never really be
evaluated since he always has a flat tympanogram (sp).
His fluid isn’t infected but it’s consistently there.
He had one of his guys “take a picture” of his inside ear, which was
much to see, but Casey thought it was neat.
(They had some high tech equipment there!).
Then they wanted him to do a hearing test in a booth where he had to
answer when he heard a sound.
Of course, my Casey has NEVER liked to be in a testing situation….But,
he did okay. Sometimes
he would blink his yes’es’ and sometimes he wouldn’t but she could tell by
the way he reacted that he heard.
They do think it is impacting his hearing, though, to a point.
Dr. Hubbel suggested tubes.
He did say that maybe the muscles to the ear canals (I think) may not be
working as well so they’re letting the fluid in.
any of your SMA kids had hearing/fluid issues??? Tubes?
I’m going to post on SMA Support and FSMA, also.
It really would be any easy procedure, with Casey, because of his trach/vent.
They just have to put him out for a bit.
I’ve always wondered about fluid with Colin.
He has chronic fluid, too, but not as extreme as Casey from what I
remember our pediatrician saying.
I’ve always wondered if tubes would help with his speech.
Of course, tube wouldn’t be as easy with Colin, being he’s a bipap
explained it to Dr. Hubbel (he’s never met Colin) and he said it would be
fine, that the RT would “bag” him while the procedure was being done.
I don’t know if I like that idea.
I’d like to think he’d be fine on bipap with a “bag” near by, as
well as a crash cart!!
I’d be grateful to hear any thoughts/ideas/experiences.
Colin lost his first tooth!
We will be taking part in a
fundraising walk in Massachusetts to raise money for Families of Spinal
is the largest international organization dedicated solely to:
Eradicating spinal muscular
atrophy (SMA) by promoting and supporting research
Helping families cope with
SMA through informational programs and support
Educating the public and
professional community about SMA
Please visit the link below
to sponsor our family! It is VERY MUCH APPRECIATED!!!
Sue, Gene, Casey and Colin
|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