April 5, 2003 through June
: Well, today it is stormy! We can't
seem to get a break with the weather. Aunt Chris isn't even coming! Nancy H.
made it at 4PM and said it was mostly wet, but it keep changing to freezing rain and then
back to rain or snow. Gene is trying HARD to get all the stuff out of the back room
and furnace room for our construction. Yes, it is supposedly FINALLY
happening!!! Tomorrow we are moving to Aunt Chris' for a week or more, who knows!!!!
Our renovations are NOT done yet! I am home now,
thinking that it's going to be at least 2 more weeks before we can get back home. The guys
are doing a great job, but it's a bigger job than I thought! Tons of plumbing work,
electrical work, sheet rocking, taping, and all that kind of stuff. Our whole house is
filled with DUST. I mean BAD!!! We're doing fine at Aunt Chris'. She just got over a
pretty bad cough/cold. Thank God, the boys have not contracted that! Casey was a little
"off" and extra spitty for a day or two, but he's fine right now. Colin is a
little "off", too, but I think that's our Colin wanting to be home in his own
environment! He is teething madly, too. I think four teeth are trying to come in right
now. His gums have bled a little bit and are soooo swollen! The worst thing we are dealing
with right now is Colin's continuing bouts with reflux. Despite his Nissen, he still gets
very uncomfortable and gulps and cries and feels miserable at times throughout the day.
The worst is the morning. Bipap helps, probably because it's easier on his
he's not working so hard and "pulling" on his diaphragm and making the reflux
work. He's been on bipap more these past couple of days than off bipap. I guess that's it.
Hugs to everyone and HAPPY EASTER!!!
Hi Everyone, Lily, Madison, Cole, Kourtney, we've
been thinking about you and praying for you! Please feel better soon! We had a nice day
today. Daddy came to Aunt Chris' before Casey woke up. Colin was all happy and in a
talking mood! We finally got Casey up and hunted for our Easter baskets. Our night nurse,
Terry, told Casey that she must have fallen asleep because she didn't see the Easter Bunny
come but saw that he had been here! Casey was very excited! 6-year-olds are the perfect
age for Easter Bunnies! Casey and Colin are enjoying their loot. Casey's favorites are
some motorcycle pj's and new baseball cards. Colin seems to like a wind-up Eater bunny and
his new "paas" (pacifiers). Casey got to see the new Harry Potter movie on DVD
while Colin took his nap. He was so intent and quiet watching it! We did see it in the
theater, but Harry Potter is such a great production you seem to notice more and more each
time you see one. Grandma and Grandpa O'Neill came over to Aunt Chris' while we were
snapping pictures of the boys. Not sure how they'll come out, but I'll share some as soon
as we get home! It was a picture perfect day here in Vermont. We took advantage of it and
Casey, Colin, Grandma, Grandpa, Daddy, Sasha and I went for a walk around Aunt Chris'
condo development. It's great because there are sidewalks and lots of people and dogs and
birds and pretty sights to see. Casey loved having Grandpa push him! Colin was perfect. I
even turned his Sat monitor off because the sun was affecting the reading. He looked and
looked and cooed and laughed and played with his fingers and smiled! I didn't have to
suction him once! Daddy, Casey and Grandpa went up to the park for a quick kite flying
while the rest of us got supper ready. They had a good time and managed to get the kite up
and enjoyed watching several others with their kites. Supper was yummy. Casey tried
Grandma's orange Jell-O. Colin had a pap break and was making all kind of sounds. Everyone
loved my bunny cake. Now we're all relaxing and winding down. A nice day all around! Take
Hello, Well, here's the update. I am home BY
MYSELF right now. Feels good. The bathroom is tiled and grouted and needs to be cleaned up
and sealed. Then it needs the ceiling painted. Casey's room needs sanding and painting.
The hallway need some more taping and such. Supposedly, a guy is coming here on Monday to
do some finishing for us. Then comes the flooring guy. Then the vinyl guy. Then the
cleaners. Soooooo, still can't say for sure, but we are getting closer! Friday we leave to
visit Karen and family. Saturday is the SMA walk in Hingham Mass. We are all (me, Gene,
Casey, Colin and Nurse Julie) looking forward to it. I haven't gotten pledges like I had
planned, but it's hard being stuck at Aunt Chris'! Casey and Colin are doing well. Right
now they are HOPEFULLY washing our van and Aunt Chris' car. It's beautifully sunny here
but cool. I am walking around in circles, wanting to DO something but can't figure out
where to start! I will find us some more clothes as we only packed for a week and are sick
of our clothes by now!! Guess that's it! Oh, I thought I'd get online again last night but
didn't. I was going to post that we're praying for Taleah and Sky (glad you're both a
little better) and Dr Bach's family and everyone else, too!
Here is a post from Karen while we were visiting
with them in Massachusetts...
Saturday, May 10: Yes - we are having a
great weekend! (Sorry Amy/Lily, Tracy/Skyler - we hope you can get to visit soon!)
The O'Neills and nurse Julie arrived on Friday
night. Today started the day with the FSMA Walk about an hour from our
house. We had
a really good time as we were able to see GILLY POWELL again - two weekends in a
row! She's such a big girl now and looks fantastic! Of course the minute
you say hi to her she flashes one of her great big smiles - I took Connor out of the car
so we could take a quick picture of Connor and Gilly together - we got the picture but
Connor decided to pull a desat (to the 70's!) so we put him quickly back in the
car. Tine - I'm glad you guys made it home safely!
We were also able to meet many of our SMA family members for the
first time - it was nice to finally meet in person - Laurie Potter and her husband Mark
(along with a few of their family members), Peg Baily (Taylor's best bud),
Silvia Murphy (who organized the walk), Michelle Rollinson (sp?), and the Gaudreaus (we
met Jim, Jenny and Michelle last weekend).
After the walk, while driving home we called the McAdams
from the car and decided to head over there for a visit. Jeff was quickly
running around setting up power cords for all of our various equipment (thanks
Jeff!) We looked like a mini-hospital setup right there on the front lawn!
(How many suction machines did we have??) The weather could not have been better as
we all enjoyed the wonderful smell of the McAdam's Lilac trees.
We are taking lots of pictures with digital and
with the regular camera and video taping...so I will post some pictures soon!
Happy Mothers Day everyone!
Here is a post from Kim, after we visited
with her family...
"I just want to share with everyone that we had a reeeaaally
nice visit today with the O'Neill and Reilly families. The O'Neills are staying with
the Reillys this weekend...and they all participated in the FSMA walk held by the Murphy
family. Skyler has been pretty darn sick this week, so we didn't go. BUT the
O'Neills and Reillys dropped by (with Nurse Julie) after the walk...and it was just GREAT
to see them. Skyler was doing muuuuch better today, so we were able to bring her
outside to hang with all the boys. Casey and Colin are just too darn handsome!
And ALL the Reilly boys are just the cutest kids going! My Casey spent FOREVER
asking Casey O. question after question - trying to get him to say "no" to
her...but Casey O. was a big ol' tease and kept answering "yes" to every
question Casey M. asked! She couldn't trick him...It was tooo funny!!! And
Colin is one strong boy! He was going thru his repertoire of farm animal noises and
smiling up a storm. He is so loud and really a charmer. Oh...and Luke
and Casey O. spent the longest time with Skippy. Skippy cuddled on Casey O's lap and
Luke stood by and helped Casey O. pat him. Skippy and Casey looked very comfortable
together! I told Gene he should have gotten the boys a miniature poodle! Luke
has decided that he wants to train Skippy to work with kids in hospitals - handicapped
kids and kids who are sick. He said that they'll have to do it on weekends, though,
because he goes to school Monday thru Friday. He seems so serious about it...he just
asked me about doing this again about 5 minutes ago!
looks fantastic! He took a good long nap - but I was so glad that he woke in time to
hang out with us a while...he really seemed to like the outdoors - and was taking
everything in around him! And Tim and Owen just crack me up! They are too
adorable! Owen and my Casey make one crazy team, though...they are both so
daring! I can't imagine what they'll be able to get into together when they get
older! Sky Diving, maybe?
Skyler was really happy to be outside (finally) - and
warmed up to Colin and his impish ways (and his shouts of "Whoa!")
by the end of the visit :o) She kept smiiiiiiling at him! But it
was all platonic, of course, because Billy S. is still her man :o)! And Colin has
Lily in his heart!
Okay...gonna run. I'll let the O'Neills and
Reillys fill you in on the walk - and their weekend visit. I am just so happy that
they took the time to drop by! It's been a really whacky, emotional week - and the
happiness - and calm - felt today was really needed!
Have a Happy, Happy Mother's Day everyone!
Mommy of Lucas, Casey and Skyler (SMA Type I, 4/12/01)
Please Help Us Fight Spinal Muscular Atrophy
Friday, May 16, 2003
UGH! I don't think we will ever be home! I'm here
right now and things are still a mess. Now we need more cement poured to even out some
flooring, AFTER the entryway has already been painted! And, they are putting in the carpet
in Casey's "old" room tonight and we haven't painted that! At least Gene and I
were able to pack up everything and get it out for the guys tonight... All I will say
about the conference is I AM JEALOUS! And I wish you all a wonderful time and a safe trip!
LAURA, why don't you scoot up to Vermont after DC?? Didn't you say that Vermont is one of
the few states you haven't visited yet???? We'd love to have you!! Don't forget that we
are home to BEN and JERRY'S! .... Colin's SLP always talks about "waking up the
palate" so that the child can get a "feel" for his mouth. I've found that
good old, POP ROCKS sure wake up the palate!! Colin and Casey love them. Colin really goes
to town making faces and moving his mouth, tongue and jaw all around. What better therapy
is there???? LOL!! Amy has tried them with Lily and she's done fine with them, too!!! Time
to head back to Aunt Chris'. I miss everyone on chat. I hope to be a regular again soon!!!
...Forgot to say that the boys are doing great!
Casey's kindergarten is winding down. We have his 1st grade teacher picked and are looking
at the classroom, etc. He loves being at Aunt Chris's condo but definitely misses the
computer. We've been getting him out and about a lot because we are much nearer the mall
and stores where AC lives that at home. Surgery will FINALLY be scheduled soon. I will let
you all know. Colin loves Aunt Chris's, too! He sleeps well and we have a good routine. He
doesn't have to worry about Sasha stepping on him because AC won't let her in the condo!
He is growing like a weed and is about 36 inches long and 19 pounds 4 ounces. He is making
lots of sound and some new words are trying to come out. We've really been working on his
leg stretches. I am determined to get him limbered up and ready for the stander when we
get home. That's it! I'll write about our Reilly visit when I have our photos up to
Friday, May 23, 2003
Quick one. We are home for the minute. We are
having the kitchen and the living room and some other areas professionally cleaned soon,
so we have to get out of here!! We hope to move in this weekend, even though we are not
quite ready!!!! Today was Casey's Kindergarten program. A boy from "pre-first"
who was in Mrs. Murtagh's class last year helped Casey do the hand movements for the
patriotic songs that the 5 Kindergarten classes sang. Very precious!!! Then, Casey and
Tyler got to be the flag wavers at the end of the show. I managed to take digital
pictures, 35 mm pictures and video, all by myself!! I didn't trust anyone else to do it!
Gene held Colin. Colin was very good and enjoyed all the commotion (can you believe he is
finally getting over his stranger anxiety????). Casey was very excited and looked sooo
handsome!! Afterwards there were tons of snacks and a plant sale. Lots of fun!! We finally
have Casey's surgery scheduled. It will be on Wednesday, June 18th. I am very scared, but
we KNOW that we have to do it for his quality of life and comfort. I do trust our surgeon
and I LOVE our PICU staff, so we'll do okay. Believe it or not, we will move back to Aunt
Chris's while he is in the hospital, because it's only about 5 minutes from the
Help. Colin just "spewed" again. FYI,
Colin will be 26 months old tomorrow, has type 1, has a g-tube and a nissen. We had the
nissen tested a while ago, as he was still seeming to reflux. It showed that it was
working fine. We now give him prilosec for reflux which seems to help some. He is on a
vivonex, baby food, juice diet that I haven't changed lately. He's been making small gains
in his weight. The last couple of days his bowels have been "slow." I gave him
some Miralax, which he's used before, and he's had several poops, one volatile. His belly
has been EXTREMELY distended with air lately, obviously more when on bipap. It just makes
the air burst out, as we've been keeping his tube vented a lot. He seemed fine this
morning, so at the time he threw up he wasn't vented. I just don't know what to do!! I
know bipap is part of the culprit. Maybe I need to work on his diet. Maybe he's not
digesting his food fast enough. Maybe I need to have him on continuous feeds, which I do
NOT want to do. Maybe he has a bug. Maybe he has something going on internally. What do I
Hi everyone, Please keep Colin in your prayers. He
threw up again yesterday...and had a rough start to the day. He's much better now.
Today Casey had an appointment in neurology. He
had a test done called an SSEP. It was some kind of test with leads on his head and legs
to get a base line on his nerve conduction. I guess it doesn't *hurt* but it definitely
was uncomfortable. Nurse Julie and I read books and magazines to him. Afterwards, we went
to the PICU to show him where he'll be to recover from his back surgery. Actually, we just
got the approval that he can be admitted Tuesday afternoon so we can get settled and have
the nurses and respiratory be familiar with him BEFORE surgery. Yay!!! Tomorrow morning
we'll move to Aunt Chris's as she is very close to the hospital. Gene or I will be with
Casey at all times (except when we have to "swap" places, but either one of our
nurses or Aunt Chris would be with him). Colin has been approved for more nursing this
week, but I don't know if we have nurses to staff more hours! Anyway, please send up
prayers for Casey and his nurses and doctors.
This evening Casey had his pre-op physical at Dr
DiMichele's office. Gene and Aunt Chris stayed with Colin. He's been having a
high hear rate and been fussy for a couple of days. Casey thought the outing to the
doctor's was an adventure! He's never been to the office before, as Dr D has always
done home visits! Nurse Peggy measured him at 45 inches tall. At the
appointment today, we got 46 inches. It's really difficult to measure him because of
his leg contractures. He will be taller after his surgery, that's for sure! Dr
D said he looks great! He was very pleased with his lung sounds and his air
movement. That's the most important thing, for sure! Casey did have lots of
ear wax sot he had his nurse Peggy irrigate them. He wanted him cleaned out in case
he got a fever and they needed to rule out ear infection. I guess we need Nurse
Darla back to crack the whip and keep us doing Casey's mineral oil ear regimen!
When we got home, we put Casey in his tub. He loves it soo much! He really was
moving his right arm a lot. Aunt Chris was holding the mirror so he could see
himself go at it!
Oh, we talked a bit about Colin and his apparent
reflux. He talked with Dr Lahiri (pulmonologist) and he was surprised that we've
actually seen formula come out of Colin. They will talk with Dr Vane who did Colin's
surgery and also Dr Colletti, the GI doc. He did say I could up his Prilosec to 2
times a day. I have to call to double check the dosage. It seems like Colin is
on way less than what Dr D said he could be on.
I'll continue to keep everyone posted!~~~
June 17: PM Mary-Ellen posted this for us:
Hi all, I just spoke to Gene O'Neill at Aunt
Chris's condo. Sue and Casey are at the hospital and Colin is with Gene. Casey is in good
spirits. His surgery is scheduled for first thing in the morning, and Gene thinks it's
going to be about 10 hours long! Yikes! I had no idea it would be that long, and can't
imagine what that wait is going to be like for Sue & Gene. I know you will all keep
Casey in your thoughts tomorrow. Sue will post us when she can. ME-ME
June 18: 9:15 AM
Hi everyone! Well, Casey has been in surgery for
about an hour now. We are in his room, which is nice. I didn't relish waiting for news
from the OR in front of a bunch of people. We got here about 3:30 Tuesday. Some of our
familiar nurse/respiratory were on, so that was good. They all know Colin from last
summer, and a few even remember Casey from way back in '99 when he got his trach! He has
not been overnight in the hospital since then. We didn't do a whole lot yesterday last
evening. They did do some labs. They finally found a good vein in the back of one of his
hands. His labs came back PERFECT!! They said it meant his breathing was awesome and his
nutrition was great!! YAY! Nurse Nancy and Aunt Chris stayed with us until about 5PM. Then
they had to go pick up Colin's medicine and pick up a few more things from the house and
feed Sister-Cat. Sasha is at Doggie Day/Night Care at Grandma and Grandpa O'Neills house.
She's quite happy there! Casey and I talked with the nurses and read some Hugs and Hope
cards. He also had me read MJ's note to him about 50 times!! If it's okay with you, MJ, I
will put it on our website later. Casey got to wear his new Sponge Bob T-shirt and boxers
to bed. Thank you Grandma O! We read some stories. We wanted to sleep early, but the FOOD
PUMP kept occluding!! The nurse finally ended up bolusing him every hour. The bed wasn't
too comfy so Casey woke up a lot wanting to be moved. Usually he is fine for several hours
and the nurse turn him while he is still sleeping. I ended up in bed with him and slept
there with him so I could move him around as needed. We both liked that! This morning they
didn't bug us until after 7AM! Amazing, isn't it! We had the same nurse from the test the
other day come in and put the leads on his head and legs for the conduction monitoring.
Then lots of people came in: anesthesia, nurses, DR Aronssen, etc. Gene came just in the
nick of time. He is the one who always goes in with the boys when they are getting their
"sleepy" meds. He suited up and was able to be with Casey until he was out.
Cowie is with Casey which is comforting to all of us! I guess that's it for the update. We
have a room phone now. We will be on the computer a lot (Gene does work stuff on his
laptop) so the phone may be busy if you call. Here's our room phone: 802 847-9366 We'll
also have our cell phone: 802 598-0357 Please know that you are in our prayers. We so much
appreciate all emails and prayers from you all. We'll keep you updated!
Lisa S updated here:
Just talked to Sue and at about 1:30 they started putting
the rods in....still got a ways to go. Lots of prayers going your way guys.
One rod in...the other one started about 3:30ish.
He's done! Everything went well. He did get some
blood. They even used some of his own blood that they "cleaned" up. I am
prepared for him to be really, really, puffy. He'll be on his belly for a day or two. I
hope he'll be able to see the TV from that position when he wakes up! I'm hoping that he
sleeps for 24 hours. He has an epidural in so they can control the pain. Oh, he has a
cuffed trach in right now. He's COMING!!
Casey is in his room and doing great! He will have
the cuffed trach for a day or so because they want to really be able to control his vent
settings. Casey is used to a leak so he can use his voice, so this won't make him happy.
We will have to judge his pain by his eye blinks and monitors. He has an epidural in which
we hope will stay put and work well. He really looks good! I was expecting a sicker,
puffier version of my boy. The surgeon was very impressed with his heart and lungs and his
tolerance through the procedure. He is fused from T2 to the sacrum. He may only have grown
an inch or so because he was soooo stiff in his upper back region. Aunt Chris is coming to
pick me up and take a peek at him. Colin has been doing great! He's been happy to have
complete control of the nurse, Aunt Chris and the video, book and play toys selection. I'm
sure when I go home and he sees me he'll cry! I'll sleep at AC's with Colin tonight and
Gene will be with Casey. Take care, Thanks for the prayers, Our prayers go out to all of
you, especially the sick kids and the travelers!
Thursday, June 19: 11AM
Well, the boy is good! He has slowed his peeing
down, which is not good. He is holding onto about 3 liters of fluid so we're working on
that. I just got back to the hospital and Casey was awake and seemed calm. He has on a
hospital johnny (we call it a "dressy") and he has his own trach back in and is
on his own vent with his own settings! He's sleeping now, making his little humming
noises. They're starting feeds SLOWLY because he has just gotten bowel sounds back and
because of the peeing thing. He is a bit puffier than yesterday but he still looks good to
me! Gene has been on the computer most of the time so our phone has been busy. I have the
cell phone on now, too, but I think I missed some calls. Glad to read that part of the
crew has made it to WA safely. I'll be watching for more updates!
Friday, June 20: 10AM
Casey is doing well. We still want him to pee
more. I just got here so I haven't heard about his gases or his lytes, but he had a good
night. He looks the tiniest less puffy today. His sats are great and his heart rate is
great. I think they may try to let him be more awake today and see how he feels. I'm still
nervous about moving him, of course, but I don't want him to get stiff and for his lungs
to lay still for too long. More prayers going out to the travelers and sick kids and
Friday, June 20: 3:30 PM
Casey is still doing really well. I just got to
hold him for about an hour. It took a while for him to get comfy, but once we did, it was
great! He is still getting some heavy duty pain meds and he still has his epidural block
in. We're HOPING to go home on Monday.
Saturday, 2PM June 21:
I'm back at the hospital. Casey was with Nurse
Nancy R for two hours with no Mommy or Daddy! He is great! They've disconnected some of
his leads. He's had some Miralax and then a suppository. And, drum roll, he's pooped
twice! He is WAY less puffy and he is very alert and looking great. He is happy. We're
going to get him up in his chair in a little bit. I want to be here a whole day without
the epidural in to see how the pain is before we go. It's still in, may come out today.
Monday, around 1PM June 23:
Nurse Sue, Colin and I are home. In a while Sue
will go and get Gene and Casey and bring them home!! Yay!
Well, we are HOME! Casey seems glad to be home and
he zonked out and took a nap in his OWN bed. Ahhhhh. He does seem a little clammy so I
worry about his pain. The weather here is very hot and humid. Gene put A/C in his room and
it is strong enough to go to the "yellow" hang out room.
Colin is glad to have his brother home. .
Glad to hear everyone has been arriving home and
SAFELY! It's great to hear everyone's anecdotes about the conference. Of course, I'm
looking forward to hearing about research and also curious about the scoliosis talks and
Time to start Family
|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