The O'Neill Family Journal!

April 2002 through June 12, 2002

April 17:

  Colin weighed in today at 16.08 pounds.  Way to go Colin!  Nurse Nancy L for Colin today.   It was VERY hot today!  I think it got up to 86 degrees!  We're breaking records, for sure.  I love dressing the kids in short and t-shirts.  Colin has a lot of really cute outfits from Casey.  I'm hoping we get to use all the 12 month ones before he gets too big!  The 18 month ones are usually a bit big, and the 12 month ones fit just right but not for much longer!  We had a visit today from the Kindergarten teacher that Casey will have next year, Mrs. Murtaugh.  Casey showed off for her playing on the computer.  We talked a lot about what her class is like.   It sounds like she will have some great ideas to include Casey in all the activities.  She is very willing to accommodate his needs.  She saw Casey's room and read him some books which he really enjoyed. 

April 18: 

 Nurse Nancy L came for Colin today.  Boy, he was a grump!  He fussed and whimpered a lot.   We brought him out on the swing and even that didn't help much.  His SATs were great, but his heart rate was high.  I ended up giving him Tylenol and prune juice!   Casey and Nurse Julie went to school.  Casey was looking pretty good in his short and sporty shirt!  I guess he had a grand ole time, as usual.  We let him swing outside when he came home so he wouldn't be sad because he was home again.  He knows he's on vacation now and seems to think that it's funny.

April 19:  

The kids had an okay day.  I woke up behind the eight ball and felt off all day long.  I learned that one of our SMA babies, Conner, passed during the night.  He passed peacefully which is a blessing.  He reminds me so much of Casey in looks, especially when Casey was younger.  Casey and Conner were about the same strength of type 1.  I've been in touch with Betsey for years always "Keeping up with the Riggs" and she kept up with us.  I know that we could have been in better touch with each other and compared notes more than we did, but life with these kids is so busy!  Both Betsey and I struggled with carving out time for ourselves, and balancing all that life has thrown us. 

So, Colin was a little less grumpy today.  I did give him some prune juice, even though he did have a poop.   He just was in a "needy" boy mood.  We went up to nap early, but then it took him about an hour, until noon, to fall asleep!  I actually fell asleep for a bit, too.  I'm almost sorry I did, because I missed my friend, Linda, who stopped by.  She moved down south and I haven't seen her for months!  Nurse Sue said she came up to see if I was awake, but I was snoring!   Jan (SLP) came for Casey this morning.  She had the little Mac laptop for Casey to borrow and try with his switch.  They used some of the pages we had programmed in a long time ago and picked some things to do.  They played Go Fish and Casey used his switch to operate his oinking pig.  While I was sleeping Jennifer (teacher) came.  She had some Choose Your Own Adventure books that they read and Casey got to pick where to go next.   Then, Colin and I came downstairs and Casey had to take a nap!  He did fall asleep but woke up after about half an hour when the phone rang.  Gene picked up the glider rocker from JC Penney that Mom and Dad got Colin for his birthday.  Next time I'll have to write him a note as Penney's called me to confirm that Gene was my husband and that I knew he was picking up my chair!  They were having a special anniversary promotion and Gene got a $50 gift card!  Aunt Chris came over.  We were all tired so we got take out from Rick's.  Casey was happy watching his news and his Jeopardy and Wheel.  Colin was grumping and fell asleep in the other room with Daddy.   We put him on bipap and he got some good rest.  I don't think he's going to like the heat and humidity this summer.  We're going to have to be careful and give him breaks on bipap and keep him cool.

April 20:  

This morning I was woken by an earthquake--literally!  It was pretty freaky.  My first thought was Casey. how's Casey (Colin and Gene were sleeping with me and they were okay).  I ran downstairs while the house was still shaking and grabbed Casey.  He was fine, didn't even wake up!  Nancy H, said that she wasn't sure what it was- thought it was the generator or some big machine going on in the garage...A few things moved on dressers and in cabinets, but that's about it.  It seemed to be mostly just the shaking and noise.  The noise is eerie, it's what I imagined the end of the world would sound like...Well, it was a 5.1 centered over near Plattsburgh, across the lake.  They had a lot of damage but no one was hurt.  It was much cooler today.  We're all back in long pants and long sleeve shirts.  Casey and Julie took a walk around the block and came back smelling like crisp, fresh air.  Lisa, (Casey's original nurse-case manager) Taya (2 1/2) and Brendan (5 months) stopped by.  Both kids are beautiful and big!  Taya is quite the talker and loves playing with all the little toys we have around here.  It was good to see them again.  We really will get together more often this spring/summer when we can be outdoors and play.

April 21:  

Colin slept really well last night.  I did move his belly around a lot and release gas, and he didn't wake up whimpering at all!   I have him up to 18/2 which is good!   We have not been great about doing the in/ex.  I do it faithfully every morning, but not 3 times a day like I'd like to.  I know it's important, but things seem to get in the way!  And, I'm not even sure how well it expands Colin's chest as I don't always see it rise and fall like I think I should.  I guess sometimes he works with it and sometimes against it.  I know that the more we do it, the more accustomed to it he'll get, so I vow to do better!  Casey woke himself up at 9:00 this morning.  He seems really well rested and ready for the day.  I did give him a bit of prune juice as he's been a little slow in the BM department.  It's about 30 degrees colder today than it has been!  Brr!  I did get some laundry out but I had to bundle up.  Gene is taking a nap with Colin so I am free for a while.   I should have gone shopping with Aunt Chris...Casey is content watching his TV.  Grandma and Grandpa O'Neill came over for supper.  Once again, Colin cried when they first came, but then he warmed up.   Oh, I talked to Liz, Kalair's Mom, for the first time ever on the phone.  We've emailed, of course, but you can get so much more involved than just sending emails back and forth. 

On, a not so happy note, Lily is having a hard time.  She's home, but has been into the hospital by ambulance twice in two days.  She's throwing up and crashing pretty hard, and her SATs aren't great and her heart rate is high.  So, Lily and Amy and Brian are not far from our thoughts...

April 22:  

My boy learned to blow a whistle today!  A couple of months ago Tami (SLP) and I tried Colin with some little, easy whistles, but he didn't understand what to do.  I found them again today when I was straightening his room while he was napping.  When he woke, I put the whistle up to his mouth while he was still on bipap and he made it go "toooot, tooot, toot."  Then, when I took him off, I quickly put it up to his mouth and he did it!  It was soft but it was a toot!  Julie and I made a really big deal out of it so he thinks he is very cool.  Casey had a nice bath today and then he got to hang out in my room on my bed and watch Shrek.  I was trying to clean in there.   Colin was a fusspot.  We finally decided to try him in his crib in his room as he would not nap in the bedroom with all of us.  It worked!  Casey also played on the computer.  Lillian came for their Jin Shin treatments.  She worked on Casey while he was playing on the computer!  I finally gave Colin some Tylenol at 5:30 PM.  Half an hour later he seemed less crabby and less needy.  Maybe it's those teeth???

Amy called this morning from the hospital in Louisville.  Lily threw up again, but didn't crash badly because they had the in/ex ready and hooked up to oxygen.  They are going to stay overnight and get her stable and then med flight to New Jersey and have Dr Bach and his team care for her.   She will probably see Timmy Weber there as he is there fighting a pneumonia they caught in it's early stages.  It just so happens that today is Timmy's FIRST BIRTHDAY!   Happy Birthday, Timothy!

April 23:  

Well, finally heard from Amy around noon today.  Lily is still in the hospital in Louisville.   After speaking with Dr Bach and Dr Bethyl they've concluded that Lily has severe reflux.  That's why she's been vomiting and desatting.  So, she needs a Nissen (Casey has one) to prevent the food from coming up.  They're hoping to med flight her to NJ to have Dr Bethyl do the surgery and be under Dr Bach's care. 

Quiet day for us.  I did some cleaning upstairs in the bedroom.  Then Colin took a nap so I cleaned some more.   Then Amy called and told me about Lily.  Then the TV guy came with the parts he cleaned and fixed.  The picture looks so much better!  Casey hung out and watched his shows.  He was probably so bored that he took a nap pretty easily.   That's about it!  Colin was much less needy today.  He was actually kind of independent.  He helped me make formula and he tried some chocolate pudding.   Colin had a bath this evening.  He had lots of fun.  He loves his wind up toys.  Casey is hanging out yelling at the sports on our news!

April 24:  

I went into town for a bit this morning.  Nothing thrilling.  Casey had another 'hanging out and watching TV ' day.  Gene picked up Colin's Kid Kart and brought it home at Noon.   It's not all fitted for him yet, but we did plunk him down in it and he seemed to like it.  We whirled around the kitchen a lot.  We swapped our bipap machine today.  The RT remembered that they had the machine at the local branch that is set up to be Colin's backup.  She brought that and we checked it out and it's way newer and just as nice as the one we've been using.  They will clean and service our old machine and that one will become the backup bipap at the branch. 

April 25:  

Another quiet day.  But, I guess that is good!  Colin didn't sleep as well last night as he has been, but did okay.  Nancy L was here for him today.  I found some light musical shakers, a horn, and drums with sticks, at the Dollar Store this morning.   Colin was happy with them!  He could make the horn blow a little bit.   He's very proud of his new found talent of blowing whistles and horns.  Casey hung out in his room this morning.  He was being kind of funny about his wants today.   Then he got ready to go to the movies on the SSTA bus with Julie.  Aunt Chris met them there.  They saw The Rookie.  Colin napped and I finished a marathon cleaning of our bedroom.  I even took up Colin's bed frame and vacuumed and wiped and dusted.   Oh, we hooked up Colin's amplifier again this morning.  He really "gets it" and makes lots of sounds with his voice and blows on his whistle a lot so he can hear himself loudly!  Well, I think Casey enjoyed the movie.   Sometimes he says "yes", and sometimes he says, "no".   Both AC and Julie cried at the ending.  Maybe he was embarrassed!  He took a nap afterwards, so it must have tired him out.  Colin had a "dip" into the low 80s today.  Sometimes he gets mad and then just gets choked up. 

April 26:  

Lily made it through surgery and did great.  She was still intubated this morning, but they will extubate her slowly as soon as they can.  I'm waiting for Amy to call with an update. 

May 7:  

No excuses for not writing.

May 8:  Both boys got their hair cut this evening.  Gene asked someone he knew from high school, Laurie, to come up.  She works at a barbers so she's cut lots of hair!  Of course, Colin was in his stranger anxiety mood.  He cried and held his breath a few times.  Casey went first.  Gene held him in a chair.  It worked out pretty well.  Colin cried and fussed through most of his FIRST haircut, but at the very end he was happy and blew kisses.

May 8:

 Had an appointment at Milton Family Practice for my allergies.  What a waste of time!  I waited 3 times longer than the nurse or doctor spent with me.  The doc gave me some samples for the new stuff, Clarinex. 

May 9:

  I got my hair cut this morning at Headlines in Milton.  Terry Pecor cut my hair and waxed my eyebrows.   She did a pretty good job.

May 11:  

Julie came at 7:30 this morning so I didn't have to get up and be with Casey!  (Not that I don't like getting up to be with Casey, but it was a nice break!)  I hinted strongly to Gene that I'd like breakfast in bed and that it would be a good time because we had coverage for Casey.  I kind of thought that I might be ALONE in bed, but no, Gene left Colin with me while he made breakfast.  And, Colin had peed through his diaper so I had a naked Colin with me!  Then, Julie and Casey came up to see me.  She insisted that Casey woke up on his own and that I had said that I wanted Casey to deliver my breakfast!  So, He helped carry the plate when Gene brought it up.   Gene made me a fruit plate with strawberries, red grapes, granny smith apple and oranges.   I also had my coffee.  Then he made bacon and eggs and toast.  It was pretty nice.  Later in the morning we worked on getting the van ready for a ride.   Colin and I put out laundry while Julie, Gene and Casey worked on the van.   Finally, we got Casey strapped in and then Colin strapped down in his Kid Kart.    We only drove around Milton, but things were good.  Casey loved it.   Colin fell asleep and was very relaxed.  Colin took a long time to fall back to sleep once we were home again and in bed.  He did sleep, and so did I!  Then Nurse Nancy R came.  Gene was out shopping so we had the boys to ourselves.  We got them both in their chairs and outside in the fresh, sunny day.  I moved some firewood back to the pile, and some brush to the swamp.  Colin didn't like that so we ended up on the swing.  He was really happy!  Nancy and Casey took a walk around the block and threw rocks into the pond. 

May 12:  

Happy Mother's Day to me!  Casey gave me a card that he made in school with his picture in it.  He also made a plaster imprint of his hand that he also decorated.  Very pretty!   Colin gave me a wonderful gift, also.  He got his first TOOTH!  It's barely perceptible, but it's definitely there.  Maybe that can account for some of his fussiness and spittiness.  Poor Grandma O'Neill has a stomach bug.  So Gene picked up some food from them and we sent down some fresh cranberry sauce that I made and we had our supper with us, and Aunt Chris and Nurse Darla.

May 13:

  Yucky, rainy day today.  I didn't feel like doing much.  Colin was very gassy and fussy last night so we didn't sleep that great.  Casey was into his morning TV routine.   Colin snuggled with Sue and his extension tube came off and made a mess so he got washed up twice today.  Colin took an hour nap which I felt was too short!  Jan came for Casey and they used the scanning cheap talk to choose activities to do.  He seems to like playing Go Fish, but doesn't always tell her whether his cards match or not.   Sometimes he is right on the money, though!  Colin just watched one of the Baby Einstein movies all by himself!  I was even way away in the kitchen and he didn't fuss!  Of course, I had lots of little toys for him to hold and touch.   He really did seem to be involved.  Now he's watching The Best of Elmo and only making a fuss noise or so once in a while.

May 14:  

Colin was not a good sleeper last night.  It's that stupid bipap!  It just does not seem to be very comfortable for him.  He is all off with the breaths.  I hope someone can help us at the conference with settings and such.  I was so tired I did NOT want to get up.  Went into Casey's room for the morning.  I worked at my desk.   Casey watched his shows and then got ready for school.  Colin fell asleep so I brought him upstairs and got him all set and on bipap.  I went into his room to pick out his clothes and he woke up crying.  He would not go to sleep.  On bipap, off, on off.  Finally, we got up and he played in the kitchen while I cleaned up.   Then he got sleepy again around 2PM so up we went.  This time he did sleep.   I upped his EPAP to 3 and his IPAPmax to 2.8.  It seemed to be better.   Who knows.  Tom came and brought back Colin's Kart with the extra tray on it.   It looks like it should work.  Colin woke up when I was downstairs talking to Tom.  He hates to be alone!  We came down and Casey came home from school.   He brought two marigolds that he grew from seeds.  He rested but didn't nap.   Darla watched Colin because my stomach felt yucky.  Aunt Chris came.   Daddy brought us Burger King.  I should be packing for New Jersey but I am not motivated.  I'm going to write a note for Julie to pick out Casey's clothes and stuff tonight.  I did get some of Colin's out.  Well, time to pack.

May 15:

  Colin slept pretty well last night, so that means we did, too.  I got up early to try to get some stuff done.  I organized a little bit.  Got ready myself, and then started Colin's care early.  Then Nancy L came for Colin.  He was trying to be fussy for a while--I couldn't leave him.  After a while he was fine.  After I woke Casey up I went to Brook's and picked up medicines and some incidentals.  Shopped at Hannaford's for some lunch and snacks for the road.  Ran into Josh, Tina's nephew.   He looked good.  Showed him pictures of the boys.  Then Pam came.   Colin was getting fussy.  Then Kim came to fix Casey's chair and Colin lost it.  He was crying and dipping and very spitty.  Pam didn't get to work with Colin at all.  We talked, but he didn't want to be messed with.  We brought him upstairs and put him on bipap, gave him Tylenol and he finally fell asleep.  I think it was partly stranger anxiety and partly his teeth and partly that he was tired.   Kim did some adjustments on Casey's chair and he says it feels a lot better.   Then Marie and Barb came and worked on Casey's cart for Kindergarten next year.   Casey listened to his music for a while and helped Nurse Sue make brownies for our road trip tomorrow.  It's tomorrow, yeah!

May 18: 2002  

Had a consult with DR. Swabbarhal, orthopedic surgeon,  at DR Bach's conference in NJ.  We brought down his x-rays so he could check them out.  DR S is the one who did MJ's surgery and we know he's got a great reputation.  I was hoping that DR Bach would be in with us but he was in the conference that was still going on during the consults.  He looked at the x-rays and quickly took a look at Casey's back.  He said that it was a significant curve, but we should wait for him to get older and grow.  He suggested an underarm brace like the Boston Brace to use to help support him and hope to delay the progression a bit.  He said that in Duchenne's Muscular Dystrophy bracing doesn't help, but it may with SMA.   I thought for sure that he'd say to get the surgery since he is at 83 degrees.   He did suggest going from the pelvis up to the top instead of just doing the top part. 

 

May 22:  

We're back from the conference.  Actually, today is Wednesday and we've been back since Sunday.   Been busy trying to get things back to base line.

Well, where to start?  The conference was good.  Some of the information was new to us, but a lot was repeat stuff, which is fine!  The best part was seeing everyone, especially the amazing kids.  The hotel was nice.  Lots of elevators and fountains and lots of room for the kids to cruise around.  The rooms were fine.  I wish they had been better about cleaning them.  We had ask several times for the room to be cleaned each day.   All we wanted was the garbage taken away and some clean towels!

Traveling was great; way better than I expected.  It was so nice to have the new lift and tie downs.  It's a tight fit, but we're getting good at fitting them in and getting them all set.  Colin rode in his Kid Kart all the way down to NJ.  We left at 11:20 AM and arrived about 5:30 PM.  We took him out once or twice to change diapers and move him around, but he was very happy in his seat.  He played with some toys, but mostly he relaxed and played with his hands.  He was cute!  He took two one-hour naps.  Casey rode in his chair most of the way.  He watched Free Willy and part of Rugrats, the Movie.  Then he did lay down on the bench seat with me and listened to his headphones. 

We found the hotel really easily as it was right off the interstate. 

May 23:  

Overall a good day for all of us.  Colin woke up happy, but when he saw Nurse Nancy, he cried.  He likes me in the morning!  I did sneak out and go to the post office to send Laura pictures of the conference.  Gene was holding him when I got back.  Tami (SLP) was here.  She was writing up something for the I-team tomorrow.  Colin will be evaluated by Ginny and Mark from the I-Team at University of Vermont.  She wants to make sure that we don't focus too much on using devices for communication, because we are SURE he will talk!  She's all for switches and devices for toys and such.  Now that the winter is over and Colin is healthy and happier and accepting bipap, Tami really hopes to focus on speech more.  She got to see Colin blow on some of his whistles and bang on his piano.  Casey woke up early.  Julie rolled him over and roughed him up!  I think she missed him and wanted him to wake up!  He hung out and watched TV in his bean bag.  Then he and Julie played Candy Land on the computer.    Joseph (her nephew) lent it to Casey.  He won, fair and square.   Then he was off to school.  Oh, Colin, Nancy and I went outside this morning and hung laundry out.  So nice to have the Kid Kart.  We had the monitor, suction and oxygen with us.  He didn't need any of it as he is so good outside!   Then he and Nancy swang outside until nap time.  Colin took a nice, long nap.   Later on, when it was almost time for bed for Colin and me, Gene brought over Bob's little ShitSu, Jordan.   Casey loves him, but Colin cried!  We went up to bed and left Daddy and Casey to play.

May 24:  

Busy morning.   Big Colin meeting for communication stuff.  Lori, OT, came, I-team members Mark Woods and Ginny Iverson and Marie McLoed, and  Jennifer (EEE) all came.   Colin bawled when he saw Lori, who happened just to be the first one here.  I held him for a while and he got used to everyone.  I put him on the couch and set him up with his Fisher Price musical piano and he banged away at it.  Everyone clapped and cheered him on, which made him smile soooo proudly!  I showed him off with his favorite toys.  He even used some of his whistles, too.  Casey got up while everybody was arriving.  Then he watched TV for a few minutes.  Then Jennifer came and played a matching game with him.  Then Lori worked on trying to fix his resting hand splints so that they will fit better.  Then he helped Nurse Sue make a pound cake to celebrate her birthday.  Finally, he got to lay down and watch his beloved MR. Rogers!  Then he watched Angels in the End Zone.  He bawled when it was over so we told him he could watch Angels in the Outfield, but I couldn't find it so he settled for E.T.  Daddy came home early (2:30 ) because he brought his friend Kevin home after his farewell lunch.  I know Gene will miss him a lot.  He's leaving IBM and going to Texas Instruments, I think.  Gene played with the boys some and then mowed the lawn.  We talked about going to the Memorial Day Parade in Essex tomorrow, but it starts at 9AM so we'd have a hard time getting up and out and settled so we aren't going.  So we all hung out and Gene made a good beef stir-fry for supper.   Casey was happy with his TV.  Colin managed to stay awake until 7:45.  We got him upstairs and he woke up but went back to sleep pretty easily.

May 25: 

What a great day we all had!  Colin slept really well on bipap.  He was on all night LONG!  So that means Gene and I slept well so we woke up ready for action.  Did our morning routine.  Got Colin ready, Casey 1/2 ready.  I let him watch TV from bed and waited for Darla to come to do the rest.  Colin and I put out 3 loads of laundry.   We bumped, bumped all around the yard.  After Darla got Casey ready, they went outside and took a walk.  Then they bumped, bumped around the yard.  Then Casey and Darla sat on the swing for hours!  Casey had his headphones.  Colin and I went in for a nap.  He slept really well.  Talked to Amy for a while.   Straighted up and did what ever I could upstairs while Colin napped.  After nap we tackled the back porch.  I convinced Gene that we needed it to be done today.   We moved the kindling to the shed.  We swept.  Washed the table, etc.   Then Gene took the hose and attached some siding cleaner to it and did the porch siding.  I did the windows.  So, it was a productive day!  Aunt Chris came and hung out with Casey outside.  Nurse Judy came.  We haven't seen her in ages!   Alec sounds like he's been quite the 2-year-old and keeping her busy.  Oh, and the weather was perfect.  Actually, maybe a tad cold, but we all do better with the cooler, less humid days, so we were happy.  We all came in late in the afternoon.   Colin watched two videos while on bipap.  Casey came in and watched some hockey.  Colin got a tub bath which he loved.  He was amazing, wiggling and kicking and grabbing toys.  He almost pulled the mirror off the side of the tub was on with suction cups. 

May 29:  

Great all around day.  Colin was perfect.  Perfect Sats. heart rate and disposition.  He was even nice when Nurse Nancy came.  And, he was nice when Jamie came for a couple of hours to shadow his care.  Colin went outside and helped Nancy thin out some of my vegetable rows.  And they walked around and enjoyed the weather.  Casey was happy, too.  Pam, PT, came and we talked about the conference and Dr Swabarhal's recommendation to brace Casey and wait on surgery.  We made a tentative appointment for casting the brace.  We talked about what it would take to get Casey mobile in his wheelchair.  She showed me some stretches for Colin's legs.  She said he was good.  She said his ankles were very flexible and that he had no need for DAFOs at this time.  She said she would check into the stander again.  What else did we do?  It was a very relaxed good day.  Daddy gave Colin a tub bath with minimal help from me!  It was nice to be with Casey and let Gene get Colin ready for bed.   Colin was very tired and fell asleep exactly at 8 PM!  Love those evening naps!  I got to read for a long time.  Casey and Gene watched their guy stuff.   No evening nurse as Darla is in Montreal because Dieter was there for work.

May 30:  

Happy Birthday, Lily!  Colin's girlfriend is now ONE!   And she's cute and loved and happy and we wish we could be there to celebrate.   I finally got out for a bit this morning and mailed Lily's birthday present and MJ's graduation gift and did some grocery shopping, and picked up a few things from the drug store.  I guess Colin was tired, from NOT SLEEPING WELL LAST night and fell asleep on his BELLY while I was out.  So Nurse Nancy and Julie brought him up for nap.  Of course he then woke up!  He did go back to sleep.  Casey and I played Candy Land on the computer this morning (not an adapted game but he loves it.) and I won!  Casey was NOT happy.  He and Julie went out early and waited for the bus.  Colin was not comfortable napping.  He was out of sync with his bipap.   He woke up one time when I went to check on him.  We vented his tube and no air came out.  Don't know.  He had fun playing this afternoon.  Bongos and shakers and books and Elmocizing.  Casey had a good day at school.  They went to the music room with the 1st graders.  I guess he really enjoyed it.  He played another game of computer Candy Land with me after school and then rested on his bed.   Colin fell asleep while I was talking to Aunt Peggy on the phone.  One minute he was on bipap (our regular afternoon time) and playing and the next minute he was asleep!  Casey got up in time to watch his beloved Friends and Raymond and the news.

May 31:  

Pretty quiet morning/afternoon.   Casey did his thing and Colin did his.  Colin took a 2 hour and 45 minute nap!  I even slept for a bit.  Nurse Sue left at 3P so Colin and I hung out and I checked on Casey while he was sleeping.  Daddy got home pretty soon after, so that was good.  Oh, one for the book--Gene was up and showered and dressed before Colin and me!  I didn't even hear him at all.  He was out of the house really early!  We got a call from Grandma O'Neill that Uncle Bill and his son were on their way to their house.  They live in Texas and came out this way to do some visiting.  They spent some time at the O'Neill's, and then came up here to see us.  Casey was chatty (not happy about having us turn off the hockey game, but he was sociable) and silly.  Colin was pretty good at first, but he got spitty and chokey and we had to suction him and give him some O2 a couple of times.  Then, we knew he was going to do a doozy, and it was 8PM so we brought him up to bed.  He was down in the 60s for a bit and did not look good.  We put his bipap on with some O2 for a bit and suctioned him and tried to get him calmed down.  He finally stabilized and then got happy and smiled and was fine.  Aunt Chris came up and watched him for a bit while I said good-bye to everyone.  That was the first time that I had ever met Uncle Bill (Grandpa O'Neill's half brother) or his son, Guy.   Wish they could have stayed a lot longer.  It would have been fun to be able to hear more about their lives.  Gene loved hearing some of the stories that Uncle Bill and Grandpa were sharing about the "old" days.    Guy and his wife have a son that they adopted from the Soviet Union.  They just went over again to meet their new daughter, but won't be able to bring her home for a couple of more weeks.  Pretty exciting!  I never really thought about it, but they are Casey and Colin's 2nd cousins, I think. 

June 1:  

Colin slept pretty well last night.  Casey didn't go to sleep until almost midnight!  Nurse Nancy and the new Nurse Mary, who was shadowing again,  were talking and that's why he couldn't sleep...that's what he blinked for this morning, anyway.  I got a lot of laundry out.  Gene brought some garage sale stuff down to his parents.  We gave Casey a nice, long blueberry bubble bath this morning.  Then Casey and Nurse Julie played on the computer and swung on my swing and then watched Rookie of the Year.   Colin and I took a nap.  It took him a while to fall asleep, but he did, and he did well on bipap.  He woke once or twice when I was trying to tidy up the bedroom and once when Gene came in, so I gave up and read my book and fell asleep.  Ahhh.   Later, we all hung out and watched some TV.  Colin played his piano for us.   Gene mowed some of the very needy lawn.  I gave Colin a tub bath this evening.   He is all fresh and ready to snuggle tonight!  No evening nurse for Casey.   Darla comes at 10PM. 

June 2:  

Let's see.   Darla stayed until 10AM this morning so it was a treat not to have to rush down to Casey...And, she got him all washed up and dressed!  He thought it was funny that she was still here in the morning.  Colin was pretty good, but a little needy this morning.  I was in the mood to clean...so Sue and I started the living room, dusting and such.  I thought it might be nice for Gene to have a nap today so he was the one who got to snuggle with Colin for his nap.  They were both snoring away when I checked on them.  Sue and I got most of the living room done.  What a job!   I was pooped.  When Gene and Colin got up, Gene got motivated and went to Wal-Mart for a bit.  Grandma and Grandpa O'Neill came over.  Colin sat with Grandma and "beat" her with a feather.  She thought it was so funny!   I got some of it on video. 

June 3:  

Happy Birthday to Skylar Saranchuck!  Happy 2nd Birthday big girl!  You go, girl!  You've had a tough go at it, but you are a fighter and you persevere!  Have a happy, happy day.  Wish we could be there for you party this weekend; we'll be there in spirit, for sure.

Well, Quite the morning today.   Casey woke up early and not necessarily in the best mood.  He was kind of sensitive and moody.  He wanted me to brush his teeth.  That went fine.   Then, he wouldn't tell Julie what he wanted to do, so I tried.  I started listing a few of the things that I know he likes, watching TV in the living room (which is what we normally do after getting washed up and dressed), laying on his mattress and watching TV in his room, playing on the computer, bumping up and down in the driveway in his wheelchair, swinging on the swing, and all he would do is cry and not open his eyes.   I told him I was leaving and that I'd come back in 3 minutes.  I could hear him "talking" to himself and sounding happy, but when I went in he'd shut his eyes and cry.  That went on a couple of times before I got out of him that he wanted to play Candy Land on the computer.  Geez!  All this was happening while Colin was not very happy.  He numbers were fine, at first, anyway, but he was not happy and he was kind of grunting.  I gave him some Advil at 9:30, thinking it was his teeth.   He started fussing really badly and I knew we had to get him to bed.  Julie and I got him upstairs, but not before he desatted a bit and had a high heart rate (180s).   Got bipap on but he was crying so hard he desatted again so I had to take it off.   Got him calmed a bit and got it back on and showed him his favorite book (Elmo's Valentine) and he started smiling.  We played for a bit and then he fell asleep at 10:45 AM.  that is way early for him!  He slept, and I slept some until Kismet came in and sat on me and started pawing my magazines on the floor.  Colin's SATs went up to 100% while sleeping.  That was nice to see.  I haven't seen 100% for days and days.  He woke up in a good mood.  We went outside and joined Casey and Julie on the swing.  I puttered a bit and hung laundry, put out the bird bath and filled in with water, watered my fuchsia, etc.  Julie and I decided to get some lunch (late) at the  diner.  She and Casey walked over it and got it.  It was very cool out, but sunny.  Colin and I stayed out and snuggled and rocked and played while Casey and Julie went in and Casey took a nap.  Finally, Colin and I went in and made formula and watched Rosie.  Then AC came.  Casey got up and we watched Oprah.  Colin started to get fussy/tired so I put him on AC and he fell right to sleep.  I snuck his bipap on.  Aunt Chris fell asleep, too!

June 5: 

 Colin weighed 16 pounds, 14 1/2 ounces this morning.  It's been hard getting his "normal" calories into him, let alone extra calories.  He's been on continuous feeds for a couple of weeks now.  He is off for an hour or so at the end of the night feeding and then off for an hour or so before he starts again at night!  It's quite a pain toting around the pump and having to worry about his feeding tube getting pulled or the connection popping off and making a mess.  Jan, (SLP) came this morning to show me some of the goals she has for Casey's IEP today.  She also dropped a bomb--that she may not be back in the fall.  GRRR.  We need her! 

June 12:  

Colin weighed in this morning at 17.025 ounces today--however much that is!

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The O'Neill Family Journal!

June 19, 2002 through December 2, 2002

Hi everyone, Boy, I can't wait for us to get home and get back to normal.  Well, Colin is doing well, even better. After the failed extubation, I got some info from DR Bach that I shared with the PICU team and they changed Colin's mode from SIMV to AC. So much better. He is breathing normal (for him) and his respirations are down and his heart rate better and his sats are up. He had a great night. He did spike a little temp at one point and they did sputum culture, urine sample, x-ray, blood work, etc. His white count is up so they put him on antibiotics. His x-ray looked even better than the day before, so atelectasis isn't the problem. He just had a reflux study. Of course he was fine the first 3 times they did it. Then Gene had them take him off the vent and try it. Sure enough, right up it went! He has a cuffed ET tube so he couldn't aspirate it. So it's like I knew all along, the reflux is due to increased respiratory effort. When he's comfy and/or on bipap, the reflux wasn't as bad. It's due to his effort and "pulling" when he breathes. So, not sure where that leaves us. We haven't come up with a consensus as to whether we should do the surgery while he is intubated or wait for him to recover. He is certainly a hard patient to intubate and I hate for him to be intubated, so we are still not sure. I think we will try extubation tomorrow with the LTV vent. I will not do it until our favorite PICU doc speaks with DR Bach and goes over extubation steps, and settings and such. Casey is doing well. He's pretty much on the tail end of his cold. He really misses his brother. I can tell he is very concerned, poor buddy. I'm sure he has lots of questions that he wishes he could ask. I can use the hospital computer to check my email so I'll be in touch.  Prayers to Gilly and Sky and my little Collie.

Thursday, June 20

Okay, just to retell Colin's story. Last Thursday, he crashed. Was intubated and found both upper lobes collapsed. Things looked better, tried to extubate on Monday (?) and he didn't do well on our bipap. Tried hospital bipap, but he was needing lots of oxygen and he was not aerating well and very uncomfortable, so he was reintubated after a couple of hours and put back on hospital vent.

Friday, June 21, 2002

Hello! He did it! Love the LTV. I'll explain all the settings later; just wanted to let you know he's extubated and happy! He's not making noises yet, but he must be sore! Hi sats are great and his heartrate is wonderful. We have him at a high breath rate right now, but we will lower that as needed. So, thanks for the support and prayers. We'll keep you updated and let you know when we're out of here.

Monday, June 24, 2002

Well, I'm feeling much better about Colin' situation than I did Saturday evening and yesterday morning...that's why I didn't write. I finally was scared. I mean, of course all this was very scary, intense and unpredictable, but I really felt all would be okay. After he was extubated he seemed to do so well and was his happy self. But Saturday evening he started having low sats and tons of secretions and was agitated and not happy. When I got to the hospital yesterday morning (Gene had been there over night) he had done several desats and bradied (sp) on bipap, without warning. I was not happy. Then the RT and I did a couple of in/ex treatments and suctioning and got him some rest and things perked up. One main problem is his feeding. He's been spitting up so they tried to insert a j-tube thru his g-tube but his opening was so narrow the tube they tried to use wouldn't pass thru. They did four tries and 4 x-rays. Grr. Today they may do it thru fluoroscopy (SP). For the remainder of the afternoon and evening and last night, Colin did great! His sats are wonderful and his heart rate and respirations are too! He must have had some plugs and/or goopy secretions that we got out. For 24 hours he was on the LTV WITHOUT any humidity, so that probably contributed to it. So, where are we today??? I guess the j-tube procedure will be first. Then Gene and I want to try to take him off the bipap for ONE minute, in a non-stressful situation and see how it goes. Two days ago I thought we'd be home today, but I guess we won't until we can feed him without spitting up. I am on my way to the hospital soon. Please send us lots of prayers. I can't wait to have my family together again. We MAY try to sneak Casey in to the PICU! He misses his brother! Glad to hear Gilly is on the mend. Whew! Keep it up, Gilly! We all send hugs to everyone! Sue

Wednesday, June 26, 2002

Hi all, Well, Monday was a wasted day at the hospital. Nothing new at all. He did well, but they couldn't get him into fluoroscopy for his j-tube so we just hung out. He did fine. He did start his fussing whenever he saw someone come in, so he's on Atavan and Tylenol around the clock for now. Oh, and they did do an EKG on him in the morning because his heart rate was slow and it jumps a little. I think his heart rate is slow because he is so comfortable with this bipap, but they wanted to be sure. Does anyone else experience that with their sat machines?? That at one second their kid will be at say, 108 and then jump to 112, or something like that?? Amy, I think you said Lily does that. Tuesday, we finally got in to do the gastric emptying study. He was fine during the whole thing. He was sandwiched between this machine and he was perfect, didn't mind at all. But, right after the test and we got back upstairs, he started fussing and having a higher heart rate than he had been having ( I know, first we worry about it being low...) and he was fussy. He was really tired but wouldn't go to sleep. He only had one nap all day. Aunt Chris finally got him to sleep. I left feeling pretty good about his day. Gene just called me this morning and said he didn't have the best night. I guess his heart rate was higher all night. They bumped up his breath rate. He was up down to 26. And they are doing a chest x-ray right now. My gut is that the x-ray will be fine. Not sure what is bugging him. His butt is very red and raw and he's only been on nutrition through IV so maybe that is bugging him. Well, off to the hospital. We may bring Casey over later. He has an appointment to get a Boston brace type deal this afternoon kind of near the hospital. They said they would waive the age limit for him!

Thursday, July 11, 2002

I'm trying to catch up! I can check my email while I am at the hospital, but can't really tie their computer up to reply like I've wanted to. Colin is doing much better. Very well, actually. For a while, he was not doing well and I was in a very dark place. I was so angry and scared and felt so powerless. I've been dealing with this disease for over 5 years, but this time it really got me. I know someone mentioned that we all sound upbeat when talking to everyone...and I always try to be that way too, and I just couldn't. I know all of you go through hard times, we wouldn't be human if we didn't. Maybe we should share some of that at times. I hate to bring anyone down, especially if they are feeling good, but I think if I had "talked" about my feelings I would have gotten over them more quickly. Anyway, Colin is still in. We are on day number 29, I believe. He is so ready to be home. He is still on bipap 24 hours, but we had him off for 5 minutes, two times yesterday and his numbers stayed fine. He was more emotional about it than needing it. Allyson, sounds like Timmy awhile ago, huh? They pulled his femoral line as they assume that was what was giving him an infection. Wait, I will backtrack a bit. He was almost ready to go home when he got c-diff, the poopy thing. It was awful diarrhea (sp?). They were treating him for that but his electrolytes and potassium were screwed up. He looked awful at this point. Then they started getting that under control and I noticed that they were throwing out the stuff they were venting thru his j-tube. Oh yeah, he got a g-jtube. I'm sure throwing out the stomach juices and bile was NOT good. So now we are venting it with a 60 cc syringe like normal. Then, he started dropping sats, increasing heart rate and spiking temp. Tracy told me that's what Sky did when her line was infected. Well, it is scary, so scary. Then when they heard that Gene has some heart arrhythmia they wanted to test Colin with this short-life drug that tries to stop racing hearts. Of course, I was alone with Colin at the time and had to give my permission for it...It didn't work, which means it was a "normal" rhythm. They did do an ultrasound of his heart to make sure it was opening and closing normally. It is. So then they were convince it was the line (in there for 21 days). They treated it with the normal course of IV antibiotics. They finally pulled it when they heard what type of bug it was. Very resilient. He is on the poopy bug antibiotic and now cipro for the infection. Yesterday he was PERFECT! So good to see him smiling again and playing and talking and kissing and flirting and looking so bright- eyed. So what is the hold up you say??? The D*** vents! They were supposed to ship one to replace the one that blew up. Oh yeah, our LTV-950s blew up before the 4th. So he's been on the hospital bipap. They won't let us out until we have 2 of them. YES, insurance is paying for 2 LTVs! Our PICU doc said they would keep him in the ICU until he could go home with a back up. Well, it seems like the LTVs are in short supply but they are getting more in today but have to inventory them and stuff. We hope to get them by Friday. But, they don't discharge on Friday, Sat, Sun or Monday, so we may be stuck until Tuesday! Can you believe it??? And we still have to come back for a Nissen!!

Tuesday July 30, 2002

Well, Collie is in surgery right this minute. I'm keeping busy with emailing, and praying! I don't know what else to say. I'm really nervous, but I have a good feeling about everything.

Friday, August 30, 2002

Hi all, Colin is doing well. Last time I think I said he was going to get the PPN thru his regular IV line. Our docs wanted it but then the surgeons vetoed it. Grr. Dr Heath finally just said let's let it go. Colin was extubated the other day and has been mostly on bipap but he's tolerated being off just fine. I just don't want to stress him. He's not been crazy about people coming in the room. He has been pitching fits when the nurses come in. He was okay with me yesterday. I think he's feeling better and he's a little bored and not happy with being at the hospital. And, I think he was hungry! He finally got some food yesterday around 5 PM. He seemed to be amazed to have something in his stomach again! He tolerated it fine. So he'll be getting some every 3 hours for now. I think they want to build him up so he can tolerate a moderate bolus. I'm not sure how much. It will be so weird for us not to have to have him on the pump all the time!! Today the epidural will be removed. Hopefully, just Tylenol will be enough. Then we should be able to hold him! I miss snuggling my boy! Well, we do get to lay in bed with him, but having him in my lap will be better! At night Gene has mostly slept in bed with him because if he stirs and finds him not there, he yells! So that is where we stand.

 

August 20, 2002

Wow, it's been a long time!   I will start from here and not attempt to try to catch up too much!

We had a nice day today.   The weather was beautiful!  So much nicer than the record-breaking heat wave of last week.  It was nice to sleep with the window open and the fan on.  I even shut the fan off in the middle of the night!  I even threw a light blanket over Colin's sheet.  He is such a hot boy he doesn't need much at night, even with the air conditioning on!  This morning both boys went out on the swing in the morning.   Casey didn't even get washed up first!  He had a nice time swinging and listening to his head phones.  Colin swung and swing and played with toys and babbled away.  He looked like he was going to fall asleep so we brought him up for a nap in his crib (Nurse Nancy H was here for him today).  He took a long time to fall asleep, but he was very happy.  Casey came in and watched some TV. 

August 23, 2002:

Big event today was getting immunizations for both boys.  Peggy from Mousetrap came out and Colin got two shots and Casey got three!  We were a little behind on both boys.  Mostly a quiet, hang out day.  Nurse Sue and Casey watched some sports.  Colin took a nap while I chatted on the phone. 

September 1, 2002

I am not kidding!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! COLIN GOT HIS 3RD TOOTH!!!!!!!!!!!!!!!!!!!!!!!!!!!1 We were pretty convinced that all that's been going on was related to teething, but now we know for sure! He got his top front tooth on his right!! Woweee! I can totally feel it and if you get in there with a flashlight you can see the tiny, tiny white little bumps! (Sorry Sky S.!)

We're painting today.   Peggy is here!

September 23, 2002

Well, I thought I had better give an update on the boys. A good one, some happy news for everyone! Both boys have been doing great! Casey is going to Kindergarten three days. He will start going 4 days in the middle of October. We have two nurses that go with him. They both know him very well and have been caring for him for years. We handpicked our teacher. She is wonderful! She has a very wonderful class of kids. There are 15 kids altogether. Casey has his girlfriend, Harley, in his class. We were able to arrange that. Mrs Murtagh has each child use a wipe before coming into class each day. She started doing that when she had a class that had a child with peanut allergy. She said her absenteeism was very low that year and the kids were very healthy, so she's doing it again this year. We had lots of meetings and assigning roles, etc. starting way back in the middle of last year. Unfortunately, our SLP left and we have to start with a new one. They hired a communication specialist to take that position so it may be okay. We also have a new case manager this year. We LOVE our old one. She is still with us. She is doing Colin's EEE services. She has stayed involved and is helping out with showing the new teachers how we adapt Casey's work, and to help them learn how Casey communicates with us. They are going to do a whole circle time around getting the kids to use "yes" and "no" questions with Casey. For instance, he wore a Harry Potter t-shirt one day and the kids asked things like "who is your favorite character?" He couldn't answer that one but if they changed it to, "is Harry your favorite character" he could blink lots of times for yes, or close his eyes for no. Casey is going to get a loaner power chair to use at school. One day he will be staying after to practice. We're hoping he won't miss too much class time to do it. They have a swing set up for him for before school and before busses come at the end of school. What else? Casey's scoliosis is pretty bad. We finally have a TLSO that we're using. He looks great in it! He doesn't mind it at all. We only use it when he sits up. I know doing it this way won't stop progression, but I think we're past that. He'll go to ortho clinic in October and we will reassess out plan then. Tomorrow both boys go to the pulmonologist. I have lots of questions for him. Well, I'm running out of steam! Can you believe it?? I will write a Colin update another day. Quickly, he is doing great. Since that tooth came in On September 1st, he has had no desats below 86. He went to 86 the other day when the doctor came to check his ears. He was doing okay until he realized who he was and then he held his breath!

 

Been a long time, again!

October 3, 2002

Casey went to the pumpkin patch with school today.  It was kind of cold and dreary out.  He and Nurse Sue managed to have fun and picked a beautiful, huge pumpkin! 

October 4, 2002

Colin is 18 months today.   Our boy is so smart and handsome and happy!  He's had some rough times this past hear, but he's come through all of these challenges and showed us his inherent strength to live and be a strong little boy.  I still hate this disease but our boy has showed us a love that puts those feelings aside so we can live every day with feelings of happiness!  Happy half birthday, little man!

Casey had school pictures taken today.  He looked a little sleepy when he went to school today--hope he perked up!

October 5, 2002

Quiet day again.  Aunt Chris is still not feeling well.  She's hardly even come near us except to bring over Gene's birthday cake and to stay for a minute that day.  I wasn't feeling great myself, so I went into bed and read and slept for a while and left Gene with both boys.   The whole shortage of covered nursing shifts has really gotten to me.   Hopefully, by the middle of this coming week things will be back to normal.   Nurse Darla and Nurse Nancy Hadd will be back from physical therapy and surgery.   Grandma and Grandpa O'Neill came over later and saved the day by bringing us dinner--pot roast and rolls and Jell-O and baked apples for dessert.  Yum.  She also folded tons of laundry and did the dishes while I got Colin ready for bed. 

October 6, 2002

Happy 12th Anniversary to us, Happy 12th Anniversary to us!  Another quiet day.  It was beautiful out; a true fall day.  I got two loads of laundry out.  Casey got a tub bath this morning which he loved.  Then we all went outside and swung for a while and enjoyed the fresh air.  Colin and I went up for a nap which he was not interested in.  He made me so frustrated with his whining that I had Nurse Sue go up and lay with him while I sat with Casey.  She listened to his fussing until he fell asleep!  I got to do a little straightening up and equipment cleaning while he slept.  I can't wait for our nursing to get back to normal so things can get back into semi shape around here!   Aunt Chris came over long enough to bring Gene and I lobsters and baked potatoes for dinner!  She didn't stay as she's still sick.  Grandma and Grandpa O'Neill came over and we all ate together and had confetti cake and ice-cream.   Grandpa rocked Casey and sang him songs.  I think they both enjoyed themselves!

October 7, 2002

Gene had to stay home from work today as we had no nurse for Casey or Colin.  we love having Daddy around all day!   He worked on his computer and made some phone calls.  I tried to straighten up and clean in-between caring for the boys.  Gene got Colin to take a nap on bipap on the floor in the living room!  Casey and I read a few books, but mostly he just watched TV.  I felt badly but I don't have a lot of energy to do anything too involved or too exciting!  Grandma and Grandpa O'Neill came over again today.   Grandpa helped Gene take out the air conditioner in Casey's room and put the big storm window back up.  It's really feeling like fall around here.  Not many swinging days left!

October 8, 2002

Nurse Nancy H. is back from her carpal tunnel surgery!  She came today for Colin.  He was very good and happy today.  Great numbers!  He was very silly and didn't want to nap!  Once he fell asleep though, he slept for almost 3 hours!  His sats were 100% and his heart rate was in the 90s and 80s so we know he got a good rest!  Casey and Nurse Sue went to school.  He was very excited when he came home.  we have some more homework to do!  I had all weekend to do homework with Casey and I just spaced it out.   Oh well.  Nurse Darla came this afternoon for Casey.  She is not doing well.  Lots of pain from her shoulder.  I don't think she's going to be able to work.  She has to consult with her docs tomorrow.

October 9, 2002

What a night!  Colin was very "airy" and restless.  No of us got much sleep, except for Casey, of course!  Nurse Julie is back from Italy and did the night shift.  I think Casey peeked at her once or twice.  She brought the boys back some great tee shirts and some coffee for Gene and I.  Good day.  Nurse Nancy L was here for Colin.   He weighed in today at 17 pounds 11.5 ounces which is an all time record!   Gene thinks he needs to weigh more, but I think he looks fine, except for his skinny chest, but that's the SMA.

October 10, 2002

Yeah!  Colin had a great night!  He tolerated sleeping on both sides and he stayed on bipap all night!   He had some gas, but not tons.  We did an experiment by taking off the whisper swivel exhalation valve off of his bipap.  Every night that we did this he had tons of gas.  Last night we put the valve back and he did great!  This morning he became really fussy and had a high heart rate during his feeding.  He also had more secretions and desatted a bit.  I think it's because he needs to poop.  It almost seems like he's refluxing again--he's making those same awful faces and the other symptoms are also a sign of reflux!  This is not supposed to happen!  That's why he had surgery!!!

Casey woke up very happy this morning.  He's off to school looking very handsome!  Well, got a call this AM from Nurse Julie.  Casey was crying and she couldn't get him to stop!  He had been working with the Special Educator and did one activity fine.  Then he just started crying!  Julie brought him into the changing room and got him out of the chair and changed him but he was still upset.  Jennifer came in, and Marie came in, but no one could seem to get him to calm down.  The more anyone asked him questions the more he cried1  I tried talking to him on the phone, but it didn't help.  I left Nurse Nancy with Colin (on bipap) and picked them up from school.  He seemed okay.  We stopped at Brooks and he helped me pick out some witch hazel (for his oily skin) and some mouth wash for him.  He was very happy and silly in the store.   When we got home, he started bawling in the driveway!  He was fine once we got inside.  No clue! 

I actually took a walk today.   We've been eating really poorly.  I've not taken the time to eat fruit or salads as I've been so busy and tired!  So I was inspired to walk today because the afternoon turned out so crisp and fresh.  Casey got to swing outside this afternoon with Julie.  Colin and I watched Halloween videos.  Aunt Chris came for the first time in a while.  Her voice still sounds awful and scratchy, but she feels better.  Casey got a tub bath and we changed his trach.

October 11, 2002

Jennifer had her school visit with Colin today.  He was very cooperative and happy!  He loved all the activities.  She had the book, tape and felt props for The Itsy Bitsy Spider.  I didn't know that it had so many verses!  Then they played with plastic "nuts and bolts."  She held the bolt and Colin screwed on the nut!  He did great!   They also fished and played with graduated cups.  Jennifer helped me download some pictures from my digital.  I really will figure it out one of these days!

I was a little worried about Casey at school today but he did fine!  I didn't hear a lot of details, but all was okay!  He came home with a lot of finished projects and lots of smiley faces and stars on his homework!  He let Colin have his egg carton caterpillar that he made and painted.

Colin and Casey both took nice naps.  We got both boys settled in the living room after naps.  Sue left at 3PM and then I was alone until Nurse Nancy R came at 4PM.  Aunt Chris came.  She's really feeling better but didn't play with the boys yet.  I actually made supper--chicken breasts that Sue invented with balsamic vinegar a little olive oil, and Nature's Seasoning baked in the oven, mashed potatoes and broccoli and cheese.  Then Gene, yes, Gene, my non-sweet husband, had a craving for dessert so we made a boxed cake with Halloween frosting.

November 9:  

We brought the boys to see Santa today!  I know, I know, it's early!  He was at a church Christmas bazaar that we go to each year at Julie's Mom's church.  This year we went early so we could see Santa.  Casey was very excited and "yelled" and "yelled" and blinked and blinked!  Santa was very cool and nice and had his nice MRS. Claus with him.  I thought I got a picture with my digital, but I didn't.   Someone took his picture and our address and will send it to us.  Casey picked out an ornament for Aunt Chris, but I couldn't find his money so he got to pay with mine!   He was really into picking out the ornament.  I showed him a bunch and then had him blink when he saw the one he wanted!

Guess who didn't like Santa????   Colin!  He loved the van ride and going down to the church basement on the elevator (he was in his Kid Kart) but at soon as he saw Santa he bawled!  And, of course, everyone wanted to see him and say how cute he was and he got pretty mad!  He desatted to 84% which isn't too bad! 

Then we went to Holy Family (the church that Gene grew up in and I made my Communion and Confirmation at and we where were married) for their bazaar.  Nurse Julie and I wanted to stay and eat but Gene wasn't feeling that great so we didn't stay too long.  OH, Casey picked out and bought another Christmas gift for Aunt Chris.

November 10, 2002

Well, tonight was a first!   Casey was in bed before Colin!  Usually Colin falls apart sometime around 7PM.   Tonight he was doing well.  We planned for Casey to go to bed at 7:45 and we did it.  It will take time to pick out clothes for tomorrow, brush teeth, get DAFOs on and read a quick book. 

November 13:

Colin got his two RSV shots today.  Nurse Nancy L did one and Nurse Sue did one at the same time.  He cried!   He seemed to get over it quicker than the flu shot last week.  Pam (PT) came this morning.  We talked a lot, especially about Casey and how he's got a lot going on and I can't seem to get anything solved/straightened out, etc.  He really is doing fine, but I really worry about his scoliosis thus his respiratory system and all of his organs, etc.  Then there is re-fitting for his TLSO, wheel chair, power wheel chair accommodations to think about, his switch, SCHOOL, which is a biggie, etc.  I talked with David at VNA (case manager) and we're going to set up another care conference within the next couple of weeks.  Both boys took nice naps today.  I went out to shop a bit in Milton; Kinney Drugs, Dollar Store, and Hannafords.  Colin woke up happy and so did Casey.  They watched Scoobly Doo--again.  I didn't feel like cleaning so   I made bread pudding.  I used some of the chocolate bread that I made with the bread machine the other day for the school meeting.  I added some oatmeal sandwich bread and some raisins, too.  Yum.  Then I got really motivated and even made supper!  I made macaroni and cheese from scratch and peas and tossed salad. 

Right before bedtime I checked my email and there was a note from MJ saying that DR Bach doesn't plan on having a conference this May.  It's very depressing to hear that.  It was something I've been looking forward to since last May.  We do plan on going to the FSMA conference in June in DC but it won't be the same.

November 14: 

Colin had a rotten night.   First, Gene got into bed and said he didn't feel well.  Great!  Then, around 2:30 AM Colin was fussy.  I flipped him a lot and "burped" his tube and still he fussed on and off until around 5AM.  I gave him some Tylenol and Gene took off his bipap and let him sleep without it.  After an hour or so he beeped for low sat so he put it back on. 

Casey was good all night.   Julie found some more tiny sties in the same eye.  He was very happy to go to school today!  I cleaned the downstairs bathroom.  Thrill.  Tami (SLP) came for Colin.  She had the old, really cool version of the Fisher Price Farm.  She had extra farmers and animals.  Colin was really into playing.  He payed attention the whole time!  She had him sort of saying "tractor", and he mooed a bit.  He didn't like the dog or the horse.  Well, after Tami was here Colin got grumpy.  We brought him up to nap and he DID NOT nap!  We tried everything!   He fussed and did little dips.  He was I rocked him and that didn't work, either.  Finally, we took him off

November 15:  

Casey got off to school in a good mood.  Colin had Jennifer come to play (teacher).  We did some paperwork for his IFSP review.  She brought watercolors which Colin enjoyed!   I thought he'd hate it since he's not too crazy about drawing with markers.   He picked his colors and let us know when he was ready for a new one and when he was done with the picture.  He's quite artistic!  Colin and I hung out and talked with Amy on the phone.  Casey came home from school all excited!  He had a great day.  Both boys took naps.  Nurse Sue left and I was alone for a while.   Lillian came (Jin Shin Jytsu).  Then Nurse Nancy R came at 4PM.  She hadn't been here for a while so she was all excited to see the boys.  Then Jackie came with a whole trunk full of food for us, and clothes, too.  She and her family adopted us for Christmas.  She said this wasn't really part of the Christmas but it sure felt like it to us!  There's a lot of foods that I like but just never buy for myself so it was extra special. 

Nancy helped me fold laundry and stuff while Gene lay down with Colin in Casey's room and got him to go to sleep.  Sleep-over because we have no night nurse.  He slept but kept waking when he heard us moving around.   Casey got very tired and couldn't even pick a book to read so we got him all snuggled in.  He fell asleep around 10PM.

November 16:

The sleepover went okay.   Casey didn't fall asleep until after 10PM.  Nurse Nancy R stayed until 10:30PM.  I slept fitfully as I was worried about Colin's banana concoction overflowing out of the venting tube.  I kept having to adjust the string and chair that it was tied to!  Gene was snoring awfully loud and I wasn't near enough to smack him so I had to suffer!  Colin slept pretty lightly, too, and then again at times he slept really, really soundly.  I got up later than normal and let everyone else sleep.  Cleaned up the living room a bit.  Got the boys dressed.  I went to the library and got the Q is for Quarry that was reserved for me.  Also got 3 from the Dear America series.  Good weekend to read!  Oh, and Gene went out and bought the generator from Aubuchon's.  He thinks he got a really good deal on it.   They are not carrying that brand anymore so they had to get rid of them.  It's new and has an electric start so I'm happy!  No nurse all day or evening.  The boys were fine.  They did watch a lot of TV!  I actually got some stuff done; paperwork, upstairs bath, clothes washed, folded, put away, etc.  Aunt Chris came over.  She made apple crisp.

November 17:

November 18:

Snow day!  No school today!   We got about 10 inches of snow.  It's very heavy, wet snow.  Julie made it just a little late.  Casey woke up when she came and didn't go back to sleep.   He stayed in his PJs and Julie got him in his chair and he played some on the computer.  The switch must be at school so we put in the Cat in the Hat ABCs that reads to you.  Then he and Julie played some.  He got a tub bath, too.  Oh, and Lori was supposed to come with the guy from VT Center for Independent Living that knows about accessibility--but he couldn't make it with the snow.  Maybe they will come next week.  Gene never went to work.  He was waiting for the guy (we weren't sure he wasn't going to make it) and then he was trying to deal with all the snow.   The littler snow blower couldn't handle the wet snow and the bigger one is in the shop needed a new engine.  Colin was pretty good today.  He was kind of needy and he took a long nap.  He seemed pretty spitty.

November 20:Well, both boys have a cold, so we join the sickos. Casey started over the weekend with increased secretions dripping into his trach. Lots of cough machine for him and rest, etc. He had a snow day Monday, which was perfect timing. He made it to school on Tuesday but Julie had to suction way more than normal and even do his trach twice which he never needs at school. But he had a team coming to evaluate him so he went. Today, is his off day anyway. We were going to see the new Harry Potter with his OT and her son, who is friends with Casey, but I thought it would be way too long for him to sit up--all those secretions will be pooling in his lungs, etc. And, we called and 3 classes were going---too many germs! So it's just as well we wait. He had a slight temp last night but did fine during the night. Today he's very happy hanging out in comfy clothes watching TV. He's not even complaining about having to watch some of Collie's shows! (Barney and Sesame Street). Colin is up and down. One minute he seems perfectly fine and the next he can have a high heart rate or cough, fuss, etc. He had lower sats last night for hours until towards morning he climbed to his normal 100% and with normal heart rate. We got out the nebulizer but haven't really needed it yet. Lots of cough machine for him, with saline, and it really helps. He's been spending a lot of time on bipap and we're encouraging long naps. So, please keep my boys in your prayers!

November 27:

Well, I got behind a bit.   Both boys had colds last week.  They did really well and got over them in a couple of days.  Casey's lingered a little longer than Colin's.  Maybe the Echinacea helped shorten the cold and lessen the severity?  Casey didn't miss school.    Luckily, Wednesday he was at his worst and that's his day off, anyway.   We let him sleep and rest a lot and didn't get him upright much.

Click here for our Thanksgiving week!

December 2, 2002

Casey didn't get to go to school today.  Nurse Julie is sick and wanted to try to get better as she is also supposed to do the night shift with Casey tonight!  Sue couldn't do it, so Casey had to stay home :(   Gene was home this morning, also, as we had a care conference.   DR. DiMichele and his nurse Peggy came, the PT Pam, and Mike from Keene and David from VNA.  I'm glad Pam was here as we talked a lot about Casey's scoliosis and surgery and such.  She's been at ortho clinic with us most times and she knows Dr Aaronson well.  Dr D is going to get in touch with Dr Lahiri about Casey's fast respirations at night.  They'll talk about what may be the cause and what we should do about it.  We talked about other things but nothing too major.  Mike is going to look into the Knightstar 330 bipap machine for me.  It's up to Keene Medical to see if they want to purchase the machines and then we could try one, but that is about the only way that we will get one.  One of the type 1/2 kids is trying it and last I heard they still liked it.

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