January 3, 2003
through April 4, 2003
Colin had a bad night.
Lots of waking up and screaming! I couldn't get him settled, so Gene did. I'm
going to call DR. D today and see if he can come out and check Colin's ears. I
looked with my otoscope and thought one ear looked a little moist and a little funny.
Casey got off to school but he was
pretty spitty. Colin and I hung out until Jennifer came to play. She brought a
big bag of plastic balls. We put Colin's bouncy chair in the bag and then put him on
it and we bounced him and played with the balls.
DR DiMichele came around 6PM.
Colin heard his voice and started to cry and his heart rate shot up! He examined his
throat and ears quickly and then we put him on bipap. He settled right down.
Well, Colin has an ear infection! I should have guessed it before today. Poor
guy! Casey's ears were fine. (but waxy!) Aunt Chris and I went to Brooks
to pick up the amoxycillan and we had to wait forever. And, I had to pay about $5
because I let the Medicaid lapse. I've got to fill out that stupid paperwork!
So Colin got his medicine and some
Advil right before bed. I drew up some more Advil and some Tylenol to have it handy
for the middle of the night.
Well, Colin slept
well last night. I loaded him up with his amoxycillan, Advil, and lots of water and
snuggled him into bed. He fell asleep very quickly. He didn't wake up crying
at all. I only had to turn him a couple of times. Casey was very sweaty
during the night. Nurse Nancy changed his tops and bottoms 3 times! His heart
rate was higher, too, but SATs were fine. He was awake when I went in around 7:15
this morning and wouldn't go back to sleep. I had to clean him out with the IN/EX a
few times before he stayed clear. I brought him into the living room and got him all
set up on the couch. Gene had brought Colin down and was doing his morning cough
machine. He got up to get a tissue because of all of Colin's spit. When he was
in the kitchen I heard Colin making some weird sounds and then all of a sudden **spewed**.
Ugh, he's not supposed to do that with the Nissen! Gene hurried and vented
his belly and got out tons of gas. Must have been between nightly bipap and the
cough machine and the medicine in his belly, that he blew up! Poor buddy! He
was fine after that.
Colin had a nice bath before nap
today. I got a lot of junk out of his mouth and nose after it. I think the
bath helps to loosen stuff up and I think the antibiotics are working already.
Casey had a shower today. He lay
on his bath chair and Julie had the shower going. He loved it!
Both boys took good, long naps this
afternoon. Now we're hanging out. I finished taking the ornaments of the tree
and Julie took the lights off for me. Gene took the tree out onto the porch. I
vacuumed and moved the furniture back. Christmas is over...Happy Birthday to Aunt
Chris and Casey coming up!
Colin was very restless. He had lots of gas. He fussed and cried.
Ugh. He woke for the day early. Nurse Sue came for Casey. We let him
sleep until 9.
Casey and Daddy played a couple of
games of Candy Land. Then Casey listened to some music on his new CD man. Then
we tried to get him to nap, but he just rested. Colin played and fussed on and off.
Put him on bipap. At nap time he started coughing so I gave him some
Benadryl. He was out for the count! It really helped to dry him up a bit so he
didn't get that post nasal drip and cough. His heart rate got nice and low and his
sats were up to 100% which they weren't over night. He slept for a really long time.
Casey is happy right now watching his Beloved Giants. They are winning!
Colin is playing and then fussing a bit. He does well when he is played with
and distracted. His bottom is all red! The antibiotics are making him poop
Casey did not want to
fall asleep last night, thus he was tired for school today but had a good day. We
rocked in the chair for a while before nap and we looked at some projects he has finished
in school. Proud boy, prouder Mommy! He fell asleep for nap very quickly!
Colin slept really well for the first
part of the night. After that it was sporadic. He pooped 4 times during the
night! Then, when he was fussing and carrying on around 6 AM the power went out!
We groped for the flashlights and I rammed my head into the doorjamb looking for
one! Ouch!! Julie came up and said Casey was still sleeping (thank God we have
a back up on his vent!) The power came on after about 5 minutes before we could even
call the company.
Hi guys, please keep Colin in your prayers. He
really is fine. But I am worried that he may dehydrate--his pooping is that bad. We're
doing some food mixture, some pedialyte and some water, but it all keeps pooping out. His
bummy is definitely yeasty. We've been keeping his bottom as clean and as aired out as we
can. I've started some nystatin powder--I like it better than the cream.
Okay guys, I'll summarize
here. New Year's Eve Colin started screaming at night with bipap. Duh, I should have
realized then. Finally I called the doc and he came over Friday, after 3 night of
screaming. He found an ear infection that he thought had been festering for a few days. So
we started Friday night on Amoxycillan 500/5cc. The next day he started pooping up a
storm. 10, 15 poops a day. I slowed his feeding and gave him some pedialyte. The next day
I noticed red in his diaper. I assumed it was the red pedialyte. I told the doc and he
said that the dye isn't digestible so that's probably what it was. I hadn't given him any
pedialyte since yesterday afternoon and this afternoon his poops were still red-red. Our
nurse had some little cards in her bag that you can test poop for blood. Sure enough, he
tested positive for blood in his stool!!! My doc is not there. The nurse at the practice
spoke with another doc and he's 99 percent sure it's irritation from the antibiotics and
the pooping. Ugh. What do you all think? He's acting normal. And his sats and heart rate
are great. Oh, AND, this morning we noticed he had a rash all over his trunk and hands!
Then, as I was on the phone with the nurse at our practice, it went away! She told me to
stop the antibiotics. It was probably a reaction. Then it came back and went several
times. WEIRD! The nurse is dropping us off some powdered antibiotic (forgot the name) to
give to him tonight until our doc can see him tomorrow. She did give us the option of
going to the OR tonight. NOT!!!! Help!!
Okay, now I just suctioned his mouth and nose
as he had lots of stuff-- more than normal, and I got blood! Way more than I had ever ever
gotten before. It's hard to see what comes out of him because we use the soft, red,
urethral catheters, but when it got to the "Y" I saw red blood. Ugh. Now what??
Colin had a great night!
We all SLEPT! Colin feels much better today!! His poop this AM was just about normal
in consistency and I didn't see any red blood. He slept sooo sooo well last night! His
bottom looks significantly better, too. The doc just came and was very happy with his
ears. He said they were back to normal. We'll do one more day with this new antibiotic and
then stop. They took some more poop to check for blood again and to culture it. Even if it
comes back positive for something (like c-diff) we may not treat it if he continues to
improve. So, I'm happy today!
Well, Casey came home in tears from school
today. Julie tried everything but he just kind of lost it. At least he was
fine during the "learning" part of the day. I asked him if he was sad
because he needed his Mommy and he blinked YES! We sat in the recliner and I
sang him a bunch of silly songs from a book he borrowed from Mrs. Murtagh. It takes
normal tunes and adds silly words to them. Like "Take Me out of the
Bathtub" to the tune of "Take Me Out to the Ballpark". He perked
Things were good
today. Colin slept well. Casey woke up extra early for school. He's
been a little slow in the pooping department so he better get "moving" or else!
Gene stayed home because Nurse Sue had to leave at 1PM. Colin and I did our
thing while Daddy worked on his computer and the phone. Jennifer came for a school
visit. She brought a new FIT teacher with her to see how things are done.
Colin was very into the activities today. Jennifer brought a really cool stacking
peg game for Colin to do. He loved it! He also did an art project--he loved
playing with the glue! Casey came home and was happy to see his Daddy. Colin
took a nice nap. I talked with Amy, Lily's mom for a long time, which was a nice
break! Casey took a cat nap but then rested in his bed. We all came out in the
living room and Daddy made a fire in the wood stove. It is COLD!
Happy Birthday to my big, handsome, silly,
smart, Casey!!!! You amaze me every day by your strong spirit and love of life! You have
helped me learn so much about love and life and I am so proud of being your MOM. 6 years
ago I did not know that I could feel so much love--thank you for being such an inspiration
to me! I love you, Silly Boy!
Well, this day will go down in our family
history as Casey's 6th birthday, but also a miracle of miracles for Colin! COLIN asked for
his cough machine! Well, not actually in words, but he had been in his Kid Kart and we put
him on bipap because his heart rate was a bit high for him. I could see a booger in his
nose through his mask. After a while we put him down on his mattress in his spot and he
kept moving his eyes and his head to the cough machine! There was nothing else over there
so I asked him if he wanted his machine and he said, "uh huh!" (yes!) We did it
and I got some goobers out and a booger. Immediately his heart rate went down 25 points!
Amazing, huh? My boy has finally gotten used to the cough assist and doesn't cry with it
and works with it so much better this past month or so. Yay!!! Oh, and I got a call from
the Make a Wish people. They are coming to talk to Casey next week. We think he's going to
want to go to Marine Land (near Buffalo on the Canadian side) to touch a whale and maybe
"swim" with some dolphins! Anyone want to join us???? MJ, we're hoping you can
Boy, I wish I had been updating on
here like I promised myself! It's not hard, or time consuming, but somehow I just
don't do it often! There has lots been going on here...mostly good stuff.
Big news: Gene had two surgeries.
One on his leg where he got the gash from his motorcycle accident that didn't heal
well. The surgeon removed some scar tissue around the tendon and nerve and it went
well. He also has surgery on his privates. We'll keep it at that! He was
home for about a week and a half between the two surgeries. He didn't complain much
at all. Of course, he tried to do more than he should have but he recovered fine.
Casey and Colin enjoyed having him home!
More big news: We adopted a dog!
Her name is Sasha. She is a 5-year-old Rottweiler that we got from a rescue
home on Long Island. Long story, but she had puppies not too long ago and they all
died. She got an infection and the foster home treated her for that and had her
looked at by the Vet and all. I think the family gave her up because they were
losing their house and/or because of the puppies...Not sure, really but she is very gentle
and sweet. She weighs about 76 pounds which is on the small side for a Rottie.
She's been a little nervous and anxious as she's been through a lot of
changes. I think she's going to fit in here fine! She's been dealing with a
little post-partum depression we think. I gave her some rubber toys that she was
treating like her babies. It was very weird! The next day she got spayed and
is acting more and more happy every day. The Vet was glad we did the spaying when we
did because of the infections. She's got some antibiotics to finish and a few days
of pain pills. She also has a "hot spot" that we have some spray for.
Gene and his dad ended up driving to
Long Island last Thursday night after supper. They didn't get to the house until
2:30 AM! There was a snow storm going on and some accidents and they forgot to
bring a map! Gene really wanted to get her ASAP because he had some time off and he
wanted to "bond" and she was starting to get "too comfortable" in her
foster home. So, Gene and his dad had quite the adventure but made it home by 12:30
PM Friday. Casey had just come home from school. Colin was over-tired so we
didn't really let him see her because we wanted him to be in a good mood when he first saw
her. Casey loved her right away!
Sasha's birthday is November 30, 1997
(same birth year as Casey!) and her official adoption day is February 7, 2003.
Let's see. Today was very, very
cold!! I was thinking of keeping Casey home today because of the cold and because of
all the sicknesses going around. Our school had a 10% absenteeism rate which is
high, but not as high as some schools. The kids in the kindergarten wing are
relatively healthy and Casey's class seems healthy, too, so away he went all snuggled
up! He had a good day at school. He and Julie stayed after and did some
projects that the kids did yesterday (Casey's day off).
Tami (SLP) came for Colin. He
did great! He was very attentive and tried very hard to do everything Tami asked him
to. Today she was trying to get him to say "please." He was putting
his lips together and spitting out so we all laughed so now he thinks that's funny to do.
He thinks that's how to say please!
Sasha had a pee accident on the living
room floor this morning. Ugh. Gene had just left for work and Tami had just
come and I was on the phone and there she went! I brought her out about 10 times
today and she didn't go that I saw! I would leave her out for 10 minutes at a time
as it's too cold for her to stay out longer than that! Gene has just GOT to fix the
kennel area for her. We were SUPPOSED to have it all set up BEFORE we got a
dog--that was our deal-- but somehow Gene got away with getting her before it was up!!
More news: Casey went to the
orth clinic again the other day. Casey, Julie and I left the house early and got
x-rays done. Then we made it to the clinic with time to spare. Pam (PT) wasn't
there, but Paul (another PT) was there. Casey's curve is still measuring about 88
degrees, but it's changed its shape. Surgery is definitely needed. DR Aronssen
wants us to see DR Heath (intensivist), DR Lahiri (pulmonoligist), and the pedi
cardiologist and pedi anesthesiologist soon, so we can talk more about risks and
expectations and all. DR Aronssen goes to a conference at Du Pont in March where he
will talk with some other surgeons there. I'm aiming for surgery in
April. This Monday we go to get a "stress" x-ray where Dr A will see how
flexible Casey is and how much correction we can expect.
Tonight Gene surprised me with a dozen
yellow roses which are my favorite! Thank you, honey! He also came home with a
colorful, beautiful bouquet of flowers for Aunt Chris and he also brought one to his mom!
Happy Valentine's Day!
Here is the link to a Valentine's Day
page that I made for everyone! Enjoy!!!
Well, the dog is on my list! She
peed again this morning. We bring her out and try all sorts of things but she won't
go. She did poop for Gene this morning. Then, this afternoon, she started
circling so I grabbed her to go out and she started pooping!! Then, when we were
just getting Casey up she started doing the circling again!! I just threw her
outside. Gene just came home. There is no way I can deal with this.
Gene came upstairs while Colin and I
were settling in for the night and said Casey lost his front top tooth!! He pulled
off his shirt, looked down, and there it was!! Poor kid, he has no top teeth now!!
The Tooth Fairy will come tonight, for sure!
Nancy Racine was supposed
to come for Casey today, but she had a family emergency, so it was just Gene and the boys,
and myself today. Sasha was pretty nervous today. Gene brought her out and
found out that she likes to pee when she's off the leash. She'd run right behind the
shed and "go" and then run back to Gene.
The fence guy came mid-day to fix the
kennel-like fence so we can open the back porch door and let Sasha out. I
tried to get Colin to take a nap in the living room, since Gene was outside with the guy,
but he didn't want any part of that! He is a creature of habit. Finally, I
brought him upstairs and he settled in for a nap. I did, too! Casey watched TV
and was very content.
Later on we worked on his 100 project
for school. They are celebrating the 100th day of school and they all had to make a
project using poster board and 100 items. Casey and I came up with the idea of
writing his name in stickers and then decorating the rest of the poster board with
stickers to make the 100 mark. It was a lot of fun and a lot of work, too!
Casey was very picky about which stickers he wanted and where they should go!
Nancy H. came at 4PM for Casey.
We decided on a bath, since tomorrow is Disney on Ice and the next day is school!
Casey had a nice tub bath and then stayed in his room and watched TV. He got to
watch Charlie Brown's Valentine's Day and then it was bed time!
Colin has been sleeping
sooo well at night! I love to watch him breath so evenly and see his lungs expand
while he's on his bipap. The Profile Lite and the Reusable Contour masks have been
wonderful! They are a tad big, but I don't have to worry about them inching up and
occluding his nostrils like the baby mask he's been using. Our boy is getting so
Just heard from the Disney on
Ice"ers"! They show was great and Casey loved it! They made it
there is two hours. Casey laid on the bench seat with his E-Z-ON vest. They
were the last ones on the ferry, so they had perfect timing. They saw Pam (PT) in
the parking lot. I'll bet Casey thought that was funny! Gene told me that when
they got to their seats Casey kind of fell apart and cried and all. I think he was
overwhelmed! He did the same thing last summer at the Monster Truck show. Once
the show started he was fine and loved it! Can't wait for them to get home!
But, Colin, Sasha, Sister and I had a nice afternoon here by ourselves. I put Sasha
out several times and finally she peed! Yay!! It's so cold here and she hates
to be out. I guess she finally figured out if she went I'd let her right back in!!!
They're home! Casey looks wiped
out but he says he had a good time! Aunt Chris bought him some kind of swirling
light stick and the big, colorful program about the show. We will bring it to school
tomorrow. Colin got a silly Tarzan hat! Casey fell asleep in record time!
Colin is in his crib room, with Daddy and Sasha, as Darla is coming for him
Colin slept really
well for Darla. He only woke for a second to be turned and then he'd look at her and
go back to sleep! Casey woke up in a good mood! He's bringing the hat AC got
Colin at Disney on Ice to school because it's silly hat day. Nurse Julie brought a
cowboy hat to wear but Casey was not happy about it! I think he was embarrassed!
Colin and I had a quiet day. I
had him in his Kid Kart and strolled him around the house while I picked up. Sasha
was a good girl. She was calm and she even peed in her pen. She does NOT like
to be out in the cold for very long!
I felt kind of achy today. After
Casey came home I brought Colin up for nap and slept on and off for about 3 hours with
him! Gene came home and he and Julie and Casey went to UHC for Casey's x-ray.
They didn't come home until after 4PM. I guess it was a disastrous trip. The
x-rays weren't there and Julie went to the State Building to get them but it was closed
for President's Day. Duh. Why would they send her there??? It took
forever because they were short staffed. Finally, they did the stress x-ray.
Julie told me Gene didn't push as hard as Dr Aronssen wanted him to. Turns out he's
not as flexible as we all thought. He corrected from about 90 degrees to about 70
something. That doesn't mean that's all the correction he'll get, but it will be a
longer, more involved surgery than we had hoped. His upper body is stiffer than the
lower part. I was not expecting this news!! Casey had fun waiting around for
his turn. Gene and he were acting very silly and had some fun time together without
Colin or Sasha intervening!
Pretty quiet day
around here. Casey wore his shirt and pants inside out today for spirit week!
Colin and I took our time getting into the swing of things today. I caught up on a
lot of paperwork and cards this morning. Colin enjoyed himself in his Kid Kart,
playing the bells and watching TV. Both boys took a nap. Casey's eyes
have been goopy for a long time now. Today I pulled down his bottom left lid and saw
a cyst type looking thing. I have a call in to the doctor.
Well, what a day!
Casey got off to school fine. He picked the dolphin shirt that Aunt Chris
gave him for Christmas to wear to school as his "favorite" shirt for spirit
Colin was a little more restless
during the night. This morning he seemed happy and fine. He was watching
Sesame Street and did his cough machine and all that and he started fussing and having a
high heart rate (175). Then he started crying harder and his oxygen levels started
dropping. We slapped on the bipap and he did better but he still cried! We had
to dump out lots of his feeding. We got out lots of air! Then he started
making weird faces and his eyes started kind of rolling and he made gurgley noises and
then ---spew! He spit up! I suctioned out lots of thick mucous and then some
formula. He looked awful! It took a really long time for him to settle down.
Oh, and thru all this his teacher, Jennifer, and his SLP, Tami, were here trying to
do a fun co-visit! They got as far as making play dough out of flour, salt, oil and
cream of tartar when he started acting so sick! They were so worried about him!
Later on, Nancy L said,
"oh, Colin has another tooth!" I didn't even know! I had been
looking at his molars that looked like they wanted to come through, and this one is to the
left of his two middle, bottom teeth! Go Colin!!
While the boys were napping I brought
Sasha to the vet to have her sutures removed. She was perfect!! She didn't
want to lay down on the table but she stood up on it and didn't make a peep! The Vet
went on and on about how good she looked and how gentle she was. She really is
getting more confident and fitting in better every day. I still do want to her and
Gene to go to obedience lessons.
DR. DiMichele just came to check out
Casey. He thought that he has a form of conjunctivitis. He said that sometimes
it can affect the lining of the eye. So, he will call in antibiotics tomorrow
morning. His ears looked good, just a bit waxy!
Colin had a FIT when Dr D came.
I had him on bipap, as a pick me up, and as soon as he saw him he cried and cried and was
all bent out of shape! It almost seemed like he was going to throw up again.
I'm almost wondering if it a behavior thing and not a stomach bug/upset thing???
Casey is the
handsomest boy in the whole world! Today was dress up day. He wore his tuxedo
that Peggy bought him when he was her ring bearer. He looked great! He did
well in school. There was a substitute as Nora had a meeting, but the kids did fine.
Colin and I hung out and I sewed some stuff, went through papers, wrote out some
cards and thank yous. Casey napped. Colin and I napped. Sue had to wake
me at 3PM when she had to go! I was pretty woozy for a while. Casey, Colin and
Sasha and I hung out and watched TV. Aunt Chris came. She and I went to Brooks
to get Casey's eye drops and Robinul. Of course, the Robinul was NOT done!
This has happened way to many times!!
We all got lots
done today! I had a long list for Gene and he crossed off more than I had hoped for!
Casey and Colin hung out in their pjs this morning. After Nurse Julie came we
gave Casey a nice tub bath. Then he played on the computer for hours, some
switch games and some with Julie. Colin took a nice nap. I got a lot of stuff
done in the bedroom and in the computer room. Gene mailed out a bunch of stuff for
me this morning. Sasha was a pretty good girl today. She was a little confused
about Gene being home all day. She was used to our routine during the week days!
She was glad to have Gene here. They were outside a lot today and she got to
go for several rides in the car and in the truck. Casey's been a good boy with his
eye drops. They don't seem to bother him at all. Colin had a tub bath this
evening. I got him on his belly and he swam, swam, swam! He looked sooo cute!
I took a few photos. After bath I put his leg immobilizers on for about half
an hour. He seems to be getting used to them. Aunt Chris called from Florida.
With the fog and all, she missed her connecting flight in Cincinnati
but got on the
next one. It was about 80 degrees in Sarasota! Her luggage is supposed to
arrive by 9PM. That's all, good night!
So far the weather
isn't too bad. We were supposed to get a messy mix of rain, snow and ice.
Casey and Colin were both in good moods this morning. Not too much fighting over the
TV!! I worked on getting my photos organized. Ugh. It's been almost a
year since I put any in my photo albums. I have to go through and make sure I have
all the pictures. Sometimes people snag them and then I lose track of what ones I
have to get reprinted. Then I have to figure out dates and write on the back of
them, then put them into the albums, etc. It's a big task. I've taken over the
dining room table for a few days.
Colin went up for nap at noon and DID
NOT nap!! Gene tried, I tried, but no go. He hasn't done that for a long
time!!! Casey, Gene and Nurse Sue left for Jane's birthday party at about 1
o'clock. The weather was just starting to get bad. Colin and I came down at
3PM and played some, but he really wanted to watch the Wiggles. Sasha was a good
girl while they were gone. I let her out back to pee. She doesn't like the
snow so she took as few steps as she could, peed and turned right around!
They made it home from the party!
It was pretty bad out. They couldn't make it up the hill in Burlington
so they had to go around through Winooski. They almost hit some guy, too. I
can't believe how much snow we got on top of the slush in a short period of time!
Glad we're all snuggled in at home!
Casey had a good time at Jane's party.
Jane is Gene's office mates daughter. She turned 5. Casey and a little
boy, Ben, were the only boys there!! Jane loves Hello Kitty so Casey got her a Hello
Kitty necklace and ring from Avon. Very cute! The party was at a ceramics
place downtown. They were going to have the party at a gymnastics place but they
found out it wasn't accessible. Jane wanted Casey and Ben to be able to come so they
changed the party theme. Ben is a little boy with CP. I've spoken with his mom
on the phone a couple of times. Ben got a g-tube right around when Colin did so we
talked a lot about that and feeding issues. Ben is a client of VNA, too.
Anyway, they all got to design and paint tiles. Casey and Gene picked out a dolphin
stamp and painted the ocean and the sun. Can't wait to see it! We'll get it
next week. Gene said Casey was very particular about what he wanted on his tile and
what colors to use. He is sooo smart!!
Colin fell asleep
last night in about 3 minutes! It was nice as I was able to finish the book I was
reading! I woke up in the middle of the night and couldn't get back to sleep.
Ugh. Must have been the ice-cream I had before bed!
Quiet day today. Nancy had came
during the day instead of the evening. Technically she was with Colin from 8-3 and
then Casey from 3-5. We both kind of did both boys. The boys watched a lot of
Wiggles today. Nancy read both boys lots of books. When Collie took his nap I
read a bunch to Casey. He could have read more and more and more! I worked on
my photos again today. Finally got through all the packs and put them in order and
labeled them and figured out what ones I need to get reprints of to make my complete sets.
Did lots of laundry and stuff like that. Colin wore his leg immobilizers for
a while. That's about it!
This evening Gene called our friend
Megan in Long Island and we talked for a while. Good to catch up! Megan, if
you're reading this, don't forget to sign the guest book!
We had an awful night! Colin fell asleep fine. He fussed to be
turned at around 10PM. I think I flipped him once or twice more. He woke up around
midnight and would not go back to sleep! He had lots of gas from his tube and from
his "bummy", too. We tried everything! I changed bipap masks, tried
no bipap, Gene tried snuggling with him, I did, Tylenol, Motrin, and still he was
awake! Sometimes he'd cry and sometimes he'd be laughing! Finally, I brought
him downstairs at 4 something so Gene could get some sleep. He was mostly fine, with
bipap, as long as the TV was on. Every time I tried to turn off the TV and have him
face me to sleep, he'd cry!!! So he watched Wiggles videos and Noggin all
night long. I dozed a bit. Once, I saw his eyes fluttering, but he struggled
and kept them open! Nurse Nancy H came for him at 8AM. We decided to keep him
up until close to nap time, give him a bath, and put him down for a nap! He was
mostly in a good mood. He and Casey watched TV and read some books. We brought
Colin up for a nice tub bath. He was really starting to lose it! He was in his
crib about 2 minutes before he fell asleep! I went in and took a nap myself.
Nurse Sue and Casey hung out. He slept mostly well, until about 3:30.
today. Ryan Nolan - SMA type 1 (5yrs, 5mos), passed away.
I've been in touch with Regina on and off for years as our boys were close in age.
I've always felt a connection to Ryan as he reminded me so much of Casey. He will be
so missed by all of his family. The SMA community now has another angel to watch
Before I forget, here is a
page I made for Jane
of her Hello
Kitty birthday party.
Nurse Sue came today but felt awful. So
when Nurse Kim came for Colin, she went home. Casey and I got ready for the
day. I talked with DR. DiMichele about Casey's goopy eyes. He thinks maybe
it's allergies, since the antibiotic drops didn't clear them up. We have a new
script for them. Colin was pretty good this morning for Kim. He did get
stepped on by Sasha right in the middle of his chest! Casey hung out on the couch
and watched TV with Colin. Lots of Wiggles! When Colin went up for nap, Casey
and I read some books. I had saved a book about Keiko for a boring day, so I brought
that out and he and I had fun reading about the real "Free Willy." Colin
didn't sleep very long. Kim and Colin rocked upstairs for a while and read
books. Nancy R came at 4PM. She brought me some coffee. I had it in a
mug and set it on the bricks near the woodstove. Along comes Sasha and laps up my
coffee! When Colin came down, he was all grumpy and fussy and had a high heart
rate. So, we did Motrin, bipap, and games. He and Casey played Nutty Elephant
and Don't Break the Ice. After Kim left, Nancy and the boys read lots of
books. Colin's heart rate came down some, but not to normal.
Here's a cute page I made for Colin.
Well, I did it again!
Got way behind on my posting.
The O'Neills went on another adventure
today! Casey had an appointment at our hospital's Children's Center to discuss scoliosis
surgery. (I HAVE to get out more!) We decided to bring Colin and his nurse as well because
we didn't feel comfortable leaving them home alone. (We like to have two people here at
all times, with the exception of either me or Gene being home alone with him). So, we
loaded up two nurses, two boys and two parents. Sasha had to stay home :( Gene and I went
in with Casey while the two nurses strolled Colin around. Colin was having sooo much fun!
He loves being on the move! We had to wait for quite a while in the exam room so Gene
amused Casey by acting silly and playing with the table going up and down and up and down
and sending his sneaker out of the room in a toy truck! Casey loved having him Mommy and
Daddy as a captive audience. He was "talking" and laughing! So, finally our
intensivist, DR Heath (whom we've know for years since Casey was first in the hospital)
and our pulmonolgist, DR Lahiri, who's relatively new, but we like him, came in. They
thought Casey looked great and we please with his health over the last 6 months. We talked
about surgery risks. Of course, there is a mortality rate but they think it's low enough
that this will improve his quality of life enough to make it a good risk to take. It's a
pretty rugged surgery. The two days post op are NOT PRETTY. Loss of blood is great. He can
lose up to 3 times the blood in his body (did I hear that right? HMM). We plan on banking
some blood for him if we are matches. Believe it or not, I don't know any of our types! I
guess that factor is pretty critical. Also, fluid exchange afterwards is a biggie, too.
Pain control is big, too. They said we could have some of our shift care nurses with him
as well as PICU nurses. That would be really good for Casey to have nurses that are
familiar to him. They think that this is a good window of time to do it. We've waited
about as long as we can without having his respiratory function compromised. They really
don't think that it's going to make much of a difference in his respiratory function but he
may have a little more lung growth if he has some more room. He will be on a hospital vent
but they will mimic our settings. They will carefully follow his blood gases/CO2 as they
want him to stay the way he is used to. Meaning, if his CO2 is normally a little bit
different than "a normal" person, they won't try to "fix" it as that
is what Casey is used to. We will also do some blood work and get a fasting metabolic
profile and prealbumin and such. We also go in for an echocardiogram just to make sure his
heart is okay. Hmm, what else? Oh, Casey is 33 pounds. We have a hard time weighing him at
home so the last we had was about 36 or 37 pounds. Tomorrow we will weigh him here and see
how our scales compare. They were happy with his weight and said it was fine where he is.
At the end of the visit we brought Colin in and they were impressed (well, after he
stopped crying at them, they were impressed! They thought he looked GREAT!! I told Dr
Lahiri about Colin's feeding issues. Colin is still having a high heart rate and fussiness
with his feedings, especially in the morning. So he said, "well, let's try some
meds." Huh, why didn't anyone else suggest this before??? I mean, we had Colin in for
an upper GI this fall to see if his Nissen was still working. Dr Heath was there for that.
I mean, that's pretty big wondering if SURGERY was working, so I don't get that, but we
will try it now. We will start with Zantac and if that doesn't work, try Prilosec. So, say
a few prayers that Zantac solves Colin's uncomfortable-ness (is that a word??) There is my
novel for the week!!
PS KIM, Colin wore his new outfit from MACY'S
today and looked adorable, thank you!! I didn't let him open the other outfit or the
stuffed animal yet!!! Thank YOU!
Today we all went to our
hospital. Casey and Nurse Sue and I went and had Casey's echocardiogram done. It was easy.
They had tons of movies to choose from. They had the TV on an arm so we could move it just
where Casey wanted it. Their selection of movies was about as good as ours at home!! Casey
had to have 3 leads on. Then the tech used the wand thingy to make a video of Casey's
heart. Of course they don't tell you much. She did say that Casey's heart is in a
different place than "normal". Nothing that we didn't suspect ourselves. She had
the camera hooked up to the pedi-cardiologists office at the same time so they were
viewing it at the same time. We were in and out of there in less than an hour. The tech
was very nice and did a nice job explaining everything to Casey.
Colin, Daddy and Nurse Kim went and got x-rays
of Colin's spine and hips for ortho clinic next week. He was a good boy. I guess when Gene
got him back in his kid kart he got mad and held his breath, but Gene slapped the bipap on
him and he was fine.
Then we all went to Mr. G's. It's a warehouse
type place that has all sorts of stuff, food and some clothes, toys, etc that are
overstocks and such. It's Gene-the-pack-rat favorite place. Casey picked out a toy for
Colin's birthday. It used to be a supermarket so it's nice and big with lots of space for
the boys to go in their chairs. So, it was a successful day. Next Thursday we go to ortho
clinic with both boys. Hope we'll be able to set a date for Casey's surgery.
THIS is MAJOR!!! I'm almost
afraid to jinx us, but here goes. As of this Monday, we are going to have some major
construction done!!!! This is something we've been wanting to do for 4 years. We had a
fundraiser for FSMA and for construction. We had a therapy tub donated. Then we were stuck
because we needed to do some septic stuff and electricity stuff. We were still stuck
because we didn't have anyone to run the project and didn't really know what to do next.
Gene spoke with our plumber guy last week. He couldn't believe we didn't get it done. He
said that we need to do it now!! He came this morning and said we need to clear everything
out and a crew is coming Monday to start work. Gene asked him what about "this"
and what about "that" and he said "Don't worry about it, we'll take care of
it!" So, we need to clear out the back room (NO easy task with my PACK RAT husband!)
and then we'll need to move out and stay with my sister for a while. Then we have to
figure out how to get Casey to school, etc, since she's in another town!! Please send
special "good construction vibes" our way. Oh and if ( I mean WHEN) this
happens, I won't have daily access to a computer, UGH!! I'll keep you updated!
Happy Birthday, Big Two-Year-Old
Here's a birthday page I made for Colin...click here!
Here are some birthday messages from our
HAPPY BIRTHDAY COLIN!!!!!!!!!!
I hope your birthday is absolutely wonderful !!
happy birthday sweet Colin!!
I hope you are having a super day! I will have tim
and owen give you kisses from me, when you see them next month!
To Colin: Happy happy birthday from me Collie!
Seems like just yesterday you were sitting on my shoulder! Huggles to you, Lily's
man!!!!!!!! Love, MJ
Happy birthday to Colin!
HAPPY, HAPPY BIRTHDAY COLIN!!!! Hope you
have a fun, fun day! Can't wait to see you and your family.
Tine and Gilly
HAPPY 2ND BIRTHDAY, COLIN O'NEILL!!!! WE HOPE
YOU HAVE A FUN, FUN, FUN, FUN DAY!!! WE LOVE YOU AND CAN'T WAIT TO SEE YOU NEXT
MONTH!!! NO BOPPING CASEY ON THE HEAD TODAY, OKAY??!! Kim
HAPPY BIRTHDAY YOU BIG 2 YEAR OLD GUY!!
YOU ARE TOOOOO COOL!!
love...Stacey, Mia, and Dylan
AN HOUR EARLY
BUT... HAPPY 2ND BIRTHDAY COLIN!!!! HAPPY BIRTHDAY TO YOU..HAPPY BIRTHDAY TO YOU.. HAPPY
BIRTHDAY DEAR COLIN.. HAPPY BIRTHDAY TO YOU!!
Tracy and Skylar
HAPPY BIRTHDAY TO YOU, HAPPY BIRTHDAY
TO YOU, HAPPY BIRTHDAY DEAREST COLIN...HAPPY BIRTHDAY TO YOU! AND OF COURSE MANY MANY
MORE!!!! We love you Colin and we hope you have a GREAT day of being spoiled rotten (not
that your NOT already...he he). Have a GREAT 2nd Birthday!!!!
Amy and Lily
HAPPY 2ND BIRTHDAY, COLIN
O'NEILL!!!! WE HOPE YOU HAVE A FUN, FUN, FUN, FUN DAY!!! WE LOVE YOU AND CAN'T WAIT TO SEE
YOU NEXT MONTH!!! NO BOPPING CASEY ON THE HEAD TODAY, OKAY??!!! AND Happy Birthday to
Tracy Murray!!! You are a fantastic mom and friend! I'm so glad you're in our lives!! We
can't wait to see you and Sky in May, too!!! Have fun, guys!!!
The McAdams Family
HAPPY BIRTHDAY COLIN
O'NEILL!! From Debbie, Payton's mom
2ND BIRTHDAY COLIN!!!!!! Wow, little Collie is 2 already...where does the time go? We hope
you're having a fantastic day, and Kalair says she hopes you get to eat some cake. We love
you and we'll miss seeing you in May. :( But maybe Kalair and I will make it up your way
some day. Tell your mommy and daddy to give you hugs and kisses from us, and go ahead and
bop Casey once or twice, that's what two year olds like to do! (Sorry Casey, you know we
love you!)......Liz and Kalair
Hi Sue, I just wanted
to wish Colin a Happy Birthday! I hope he has a wonderful day! Please give him
a big hug for me! :o) Lots of Love, Kelli
BIRTHDAY COLIN....WE HOPE YOU HAD A WONDERFUL, HAPPY DAY!
LOTS OF LOVE, HUGS AND KISSES
JIM & REGINA NOLAN
Thank you to everybody
from Hugs & Hope! Colin (and Casey)
received many birthday cards and e-cards and gifts from so many Hugs and Hopers!!
Thank you! It's so heart warming to read each card we receive from people who have
found a place in their heart for our family!
This seems to be an appropriate place
to start Family Journal 4!!!
|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