The O'Neill Family Journal!

January 3, 2003 through April 4, 2003

January 3:

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.

January 4:  

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!

January 5:  

Long night.  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 lots. 

January 7:  

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.

January 8:  

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??

January 9:  

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 right up!

January 10:  

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!

January 23:

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 come!

February 13:

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.  Busy!

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!

February 14:

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!

February 15:

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!                          

February 16:

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 big!

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 tonight.

February 17:  

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!

February 18:  

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.

February 20:  

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 week.  

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???   Don't know!

February 21:  

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!! 

February 22:  

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!

February 23:  

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!!

February 24:  

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!

       February 25:  

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.

Sad news 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 over us.

February 28: 

 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.

March 8:   

Well, I did it again!   Got way behind on my posting. 

March 25:

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!

April 2:  

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.

April 3:  

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!

April 4:  

Happy Birthday, Big Two-Year-Old Colin!!

Here's a birthday page I made for here!

Here are some birthday messages from our friends:


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!

Laura Marie

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!

From Kenya

HAPPY, HAPPY BIRTHDAY COLIN!!!!  Hope you have a fun, fun day!   Can't wait to see you and your family.

Tine and Gilly



lotsa love...Stacey, Mia, and Dylan


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


HAPPY 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




  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!!!



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