The O'Neill Family Journal!

April 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 highschool, 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 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 oxgen 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 McLoud, 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 Endzone.  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 ankeleswere 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'Neills, 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 stablilized 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'Neills 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 adn 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 swang 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 WalMart 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 fuschia, 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 4:

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 6:

June 12:  Colin weighed in this morning at 17.025 ounces today--however much that is!

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