| The O'Neill
Family Journal!
Happy NEW year everyone!
Please pray for a cure for Spinal Muscular Atrophy!! This could be THE year!
January 1-June 15, 2004
January 1, 2004!
Yesterday Casey had an appointment at our local
hospital in the Children's Specialty Center to try the "vest". We had to bring
Colin, too, as we had no nurse for him. So, off we go. Gene dropped us at the front and
went to park the van. We were miraculously a bit early, so Nurse Sue wanted to get a drink
in the cafeteria right inside the lobby. I said I'd stay with both boys. Nurse Sue had
really bundled Casey up so I asked him if he was ready to have his mittens off. He
blinked, "yes". So the mittens came off with a dramatic flourish. Then I asked
if he wanted his hat off. More blinks. I whipped off his hat. Then I asked him if he
wanted his "gray thing" off (it's a head master collar we use when he's riding
in the car/bus, but we call it his gray thing). He blinked yes again, so I undid the
Velcro on one side and "voila" ripped it off, along with his trach ties and HIS
TRACH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!! I
freaked! I didn't want to leave them alone, but I had to make a choice. I ran into the
cafeteria and yelled to Sue. Then I started pushing both boys to the Children's Specialty
Center, also right in the lobby. I yelled to the receptionist that we needed a room. I
started right back and she started asking me all these dumb questions. I ran into a room
and started undoing his straps and pulling out his bag with his spare trach and supplies.
Sue was there by this time. We both were doing what we needed to do. Then our
pulmonologist came in and his RT and all sorts of people. Sue was all gloved up and ready
to go when Gene came in. Gene is ALWAYS the trach changer. For some reason, he's the one
who likes to do the trach changes and the g-tube changes. Sue had changed Casey's trach
once about 4 years ago! I was seeing secretions come out of his hole. He was breathing
fine. We put Colin's SAT monitor on him and he was 98% and 140s, which is a high heart
rate for him. Gene got it in within seconds. Of course, I wish we had his cough machine.
We had him all fixed up and calmed down and then we tried the vest. He cried BIG tears at
first and every time I tried to talk to him he'd close his eyes and not respond to me.
After awhile he seemed to like it better. He used it for 10 minutes, stopped and then did
10 more. He was using the smallest "full" vest, I think they called it. We're
going to try it at home for 30 days and see if it's beneficial. The RT didn't think it
really was much "better" than manual CPT, just that it was easier. Anyway,
that's my story of Mean Mommy of the Year!
January 24, 2004:
Casey had a really nice birthday. The only
thing missing (well, that we had planned on) was Grandma O'Neill. She's in the
hospital with a BAD gall bladder. She's having surgery to remove it, but not until
Monday. So, Aunt Peggy is up from White River helping out and visiting Grandma, so
she was able to come for his party. We called having Aunt Peggy here on his birthday
'the booby prize'! (Sense of humor here, Peggy!)
Casey woke up in a happy mood. He definitely
was excited for his special day! Sue and I gave him a shower so he was all fresh and
clean and spiffy. We bundled him up and he and Nurse Sue went off to school.
Gene went over later with the cupcakes I had made. He said one of the boys whispered
"Oh, I think he's got cupcakes in there!" Casey enjoyed making airpopped
popcorn for the kids. And, all the kids enjoyed the cupcakes. There were only
about 8 kids in class today as many were out with the yucky stomach bug. So Casey
gave away some cupcakes to some of the other teachers. He gave one to Sharyn, the
busdriver, and Kim, the bus aide. Sharyn surprised him, on the bus run home, with a
birthday balloon bouquet with purple and blue balloons and a mylar football
balloon!!!
Nancy L. (Colin's nurse and I) decorated the table
area with balloons and streamers and all that kind of stuff. Julie had already done
Casey's room and entryway. Nurse Terry came to visit and drop off a gift for Casey.
She and Colin had a good time playing "bat the balloon"!
Casey came home and relaxed for a while.
Aunt Chris came and then Nurse Nancy R came for Casey. We got Casey up in his chair
and started opening cards. He got lots of cards from Hugs and Hope! Then Aunt Peggy and Grandpa
came with Chicken Charlie's. We pigged out on that and then dug into the gifts and
more cards! Casey really enjoyed himself! He was amazed with all his different
gifts. He got Clue Jr., an electronic football game, LOTS and LOTS of wonderful
books, a swimming dolphin lamp, and a dancing dolphin lamp, a yellow sleeveless jersey, a
TOM BRADY #12 football jersey, Country Bears DVD, Sponge Bob DVD, Baseball Bloopers video,
oh, and SO much more! He was very DELIGHTED!!!!!!!!
Caesy and Colin put out his birthday candles with
the candle snuffer. Casey was very generous and let Colin do a couple!
January 24:
Pretty quiet day today. Casey was up early.
Guess he was still on school time. Nancy H and I brought him out to the
living room before she left at 7:30 AM. We watched his NEW Wiggles video! Got
Colin and Gene up and surprised them by Casey already being in the living room!
Darla came at 10AM for Casey. We gave him a
shower. Then Casey, Colin, Darla and I played Clue Jr. Casey won, of course!
It was Colonel Mustard at 2:00 with Coke. Then they played Mr Potato Head
Yatzee. Casey and Colin loved it! Colin took a nap while I read more of Angels
and Demons (Dan Brown). Gene was at his parents helping out and trying to get the
other car started. Very cold today. Wind Chill Advisory in Effect.
January 28:
Well, Grandma had her surgery laproscopically and
is HOME! Once they decided on doing the surgery, everything went quickly.
Peggy is actually home in White River and working today. She has done an amazing job
of helping out. I feel that I wasn't much help, but being with the boys and being
short of nursing, that's the way it was. Peggy worked her butt off cleaning up Main
Street and making things look nice for Grandma and Grandpa. She went through all
sorts of boxes and cabinets, etc. Julia didn't end up coming because of the weather
and all. Grandma certainly is glad to be home!
Jennifer came for Collie today. We gave him
a tub bath and they played. He even let her "fix" his hair!
Casey is asleep in bed. He is all snuggled in and
humming in his sleep. I hope he has good dreams! I sent Gene up with Colin
tonight because Colin looked like he had a lot of "awake" time left in him and I
didn't want to have to fight with him to go to sleep! Colin had a great sleeping
night last night. He had a HUGE poop before bed and I think that really made the
difference. He didn't have all that gurgling going on in his belly!
January 29:
Busy morning today. Pam came for Colin.
She definitely said his knees and hips are tighter than she's seen them. We
did get him in the stander and had to make it taller. Seems like he's had a growth
spurt. She said that sometimes when you have a growth spurt, the bones grow faster
than the muscles so that may be why Colin is tight right now. So, we're to put his
leg wraps on and put him on his belly two times a day for about 15 to 20 minutes at
a time. Tami came for a co-visit. We didn't get too far with that because we
had to fiddle so much with Colin in the stander. He really needs his bipap when he
is up high and it was hard, to nearly impossible, for him to play with anything on his
tray because he could't see it! Tami (Ms TV hater) even put the TV on for him
because at least he was occupied and distracted while he was standing.
Then, Barb Vezina came and took me out for a bit.
We picked up my photos from Christmas, Aunt Chris's birthday, and Casey's birthday
from Kinney's. Then we went to Rosario's and had a nice relaxing
lunch and chatted. When I came home, I went up to see Colin and Nancy, and then
JULIE dashed up the stairs! WHAT???????? They were supposed to be at
SCHOOL!!! Julie said Casey was a little blah and didn't want to do anything
and they couldn't engage him in ANY task They stopped at the nurses office and
he had a temp of 100.3. She caught Sharyn and got the early bus and they were home
by 2:15. Julie got him in his PJs and snuggled him in bed. I went down and
asked him if he wanted me to get in bed with him and read our Herbie Jones book and he
said "NO"! He fell asleep and would have slept forever, but we woke him
after an hour. He seems fine, no extra secretions, just kind of poopy tired.
COLIN'S WISH WAS APPROVED BY THE Make-A-Wish BOARD LAST NIGHT! Abbey from MAW
just called me and was sooo excited! His wish is to have a room where he can swing all
year round. We have a garage, right off of Casey's room, that we/they will convert! They
approved sheetrock and flooring and heat and two swings of our choice!!!!! We are hoping
that the Vermont Center for Independent Living will help us with a driveway access
activated by their switches!!! . Now we just need GENE TO GET ALL OF HIS JUNK OUT OF THE
GARAGE!!!!!!!!!!!!!!
January 30:
Casey stayed home from school today. He
really is fine, but I don't want to tax him too much so we gave him a break today.
Sue was sick, so Nancy H came in at 9:00. Darla stayed until then. We didn't
do too much. I tried to clean/straighten the bedroom. The boys played some and
Casey read tons of books. Colin was up in his crib for a nap for two hours but never
slept! He's in a fine mood, though!
January 31:
Casey went bowling today! Nurse Julie, Gene and Casey met Peggy and Joseph at the bowling alley. They had a
great time! They played a full game and Casey was winning the whole way through
until the last frame when Daddy tied him and then Julie beat him! They
played part of a second game, but then Casey's battery started beeping for low
power. On the way home Gene tried to use the cigarette lighter plug but it didn't
work. They made it home fine. Colin had a tub bath and we enjoyed some quiet
time and a nap while they were out.
April 24 & 25:
Well, what a weekend! It was sooo windy!
We really wanted to get some stuff done around the house and outside...but we had
no nurse during the day so we were limited in what we could do. Gene ended up going
out and doing errands and picked up Aunt Chris' bistro table from Home Depot. Then,
he came home and Aunt Peggy came over. They worked and worked on putting up the
temporary "shed". They had a rough time following the directions and
fighting the wind, but I really think they actually had a good time spending the afternoon
together! Nancy Hadd came at 4PM so it gave me a little more leeway so I could get
out and work outside. I raked some and cleaned up around the blueberry bushes so we
can mulch them and I dragged some branches to the brush pile.
Aunt Peggy was thinking about sleeping over, but
in the end she stayed at Grandma and Grandpa's. Casey wasn't too disappointed.
Sunday morning Grandpa, Aunt Peggy, RJ and Tyler
came over early and worked their butts off moving stuff from the big shed to the temporary
one. The boys did a really good job. We also had time to move some wood and
get rid of some of Gene's junk wood pile.
April 27:
We had pulmonology appointments today for both
boys at the Children's Specialty Center. I just got up from a nap because I am exhausted!
Actually, it wasn't even stressful. I was thinking about last time we went when I pulled
Casey's trach out while we were in the lobby! No mishaps this time!
Dr Lahiri said Colin looked wonderful! He was sooo
pleased with his movement and his color and everything. He said his lungs were crystal
clear with amazing air movement throughout. He said Casey was a true wonder boy! He said
he sounded perfect and was happy he had such a illness-free winter despite going to school
and being around germy kids and being tired out every day from his long school days. We
made plans for Casey to go back in June to evaluate his trach size and all. They will take
an x-ray and look at placement and then they will do a flexible bronch through his trach
tube. Dr Lahiri and our favorite PICU doc, Dr Heath, will do it in Ambulatory.
Dr Heath came down to visit us and was so pleased
to see Casey sitting so straight. He was the main doc during Casey's scoliosis surgery
stay. We did decide to get some bloodwork done at my suggestion. I quickly called Karen
this AM to ask what I should get! I've never had their amino acid profiles done before.
This is what I had saved on my computer from other families so I asked for these:
**fasting quantitative plasma amino acids, basic metabolic panels, mg, zinc, phos,
creatine ) **metabolic acidosis **Complete Metabolic Profile and an amino acid screen I'm
sure some of those are overlapping and/or other ways to say the same thing, but he seemed
to know what I was after. So they sent an IV nurse down and she was amazing!! She was
nervous, as I had told her what hard sticks they are, but she took her time and searched
and searched and did each boy on the FIRST stick!! They seemed pleased to have the same
type of bandages as Daddy comes home with after he has donated blood. Poor Colin's
heartrate (on bipap) shot up to 190 for about two minutes, but his SATs stayed at 99-100%.
His little arm does have those little petechiae all over but he's fine.
Hmm, that's about it. Casey came home and wanted
to play Operation on the (hand over hand) on the computer. He says he wants to be a doctor
when he grows up. Colin took a nappy and I took a nappy (by myself).
April 30:
What a beautiful day! Spring is finally here
in Vermont!
May 23:
Well, I think spinach is a "no go" for
the boys. I've given it to Casey a couple of times and every time he had to poop he'd cry
for a bit before hand, during and after. Then he'd be fine. And, once when I was giving
him some free water, I had the 60cc syringe on his extension and when I opened it, POP!!
Casey NEVER has gas, unlike Colin who always does. Then, this morning, Colin just finished
his first feeding of the day. I put him on bipap because he's been a little slow in the
poop department and I thought it might help him poop. Gene and I went up in the attic and
Nurse Sue was with the boys. She was getting Colin washed up (so he was off his bipap) and
she yelled "Colin's throwing up!!" I ran down (leaving Gene stranded in the
attic) and Sue was suctioning him, I popped opened his tube and got tons of air
out--probably from the bipap and spinach. He was totally fine once he threw up, laughing
at Toy Story 2. He did it one more time and seems fine now. Gene ended up giving him a
Fleet Baby Lax as I think being a bit stopped up contributed to his throwing up. And YES,
Colin does have a nissen fundiplication which is supposed to prevent reflux!! (But,
then again, the nissen shouldn't be too tight so that he would blow up in such
circumstances!)
Our garage is coming along very well. They
poured the cement on May 12th, took the next day to let it set, and then while we were on
our way to Massachusetts to go to the Reilly's they started construction. Aunt Peggy
and Grandma and Grandpa O'Neill came up and they had all four walls framed already!
Our entire trip to Massachusetts was wonderful!
We did get ourselves lost a bit, but not as bad as last year. We left at
about 11:00 AM on Friday which was only an hour past our hoped for departure time.
Gene always forgets how long a drive it is to the kennel and back. And, of course,
he is not crazy about leaving Sasha in the first place so he waits until the last second
to bring her over. On the way down we stopped at the VA and met Peggy. She
and one of her friends came out to visit with us while we had our adult Happy Meals from
McDonald's. Peggy insisted she needed the "step-o-meters" that came in our
meals. (She and a friend walk at lunch time).
We arrived at the Reilly's around 5:30 or so.
So good to see Karen and Bill and Tim and Owen and Connor with his trach!
They've rearranged the family room so it's nice and roomy for Connor so we had plenty of
room for all of us.
June 1:
...Casey is driving, for really,
real-real! He got his Power Chair to KEEP today! I hadn't made a big deal
about it with him since we've had lots of setbacks. STILL, we don't have the
"basket" for his vent to hang on but we put it on the battery compartment and
just didn't have his suction on it. He had a blast! It's still going to take
time, but I think he's going to fly with it! We went outside and Tom (whellchair
guy) practiced with him. Casey was very excited and thought pretty "big"
about himself that he had control over his cruising! For the record, he has a
Permobil Entra with a Mini Flex seating system. He has a "loaner" custom
Whitmeyer headrest that I think will be the answer to all of our head/neck issues.
He is using a proximity switch that is mounted under his lap tray that he uses with his
thumb...up for go and off for stop. He has to watch a light display to see and wait
for the direction that he wants to go in. It's a bit cumbersome, but hey, he is
driving a power chair with a SINGLE Switch!! His chair also has the tilt/recline
features and up/down feature but it's not hooked up to his scanning light device--it can
be hooked up in the future. The scanning device and the proximity switch are made by
ASL. They are made to work together. We tried using the IST round switch that
he was used to, but it didn't mesh right with this scanning device. I wish they made
this switch to use for toys and the computer! It is really sturdy and easy to
position, etc. Our IST switch is in the shop AGAIN. It's under
warranty so hopefully we just had a "bum" one and the new one will be fine.
The chair also has a "kill" switch that we can hang onto when he's
practicing, in case he gets in a precariojus position! And, it has an external
control that we can access to help him with turns, etc. Very Cool. Tom is
coming back tonight to teach Gene, Aunt Chris, the nurse and I everything about the chair,
so I will add more later if anything extra cool comes up. For $29,000 I would hope
it will be an tool to make my big boy more independent and open his world even more!
June 5:
We went to the Essex
Junction Balloon fest this afternoon! It was weird leaving the house at 4:30!
I kept telling the boys that we were going to be leaving when it was almost bed
time! We wanted to see the balloon launching which is why we went later in the day.
We walked around a lot and checked out all the rides and exhibits and fun stuff.
We went in the petting zoo (not as fun as yours since the animals were in fences).
We got to walk/roll through a balloon on its side. Very cool! The boys
were great! The weather was perfect! I did keep Colin on his bipap when we
were in the fields with the balloons because it was soooo dusty, yuck. We all
enjoyed ourselves (Gene, myself, Nurse Nancy and Aunt Chris and the boys). We got to
eat yummy food that's bad for you. I had fried dough with maple syrup and sugar.
We saw lots of people we know. Lisa
LeProvost was there but Taya and Brendan wouldn't come over to see us as they were too
busy eating! We saw Sheila, her mom and baby Sam. Colin did his baby
immitation for him. Trina, mom to Angel-baby Kassidy, and Grandma Sue were there.
They were very excited to see the boys out and about.
Colin is still awake--no nap today, and very
happy. Casey just had a shower and is giggling in his room. A good day for us
all around!
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