The O'Neill Family Journal!

October 5, 2005 thru 

December 31, 2005

star6.gif (1107 bytes)

  We're going apple picking today with Colin's pre-school class!  I persuaded Gene to go with us, too.  So he was our 'driver and pusher through grass'.  Shannon (CF) came to the house and rode up with us.  I think it's really good for her to see Colin outside of the TV school environment.  She was very helpful and in tune with getting him strapped down in his Kid Kart and watching his tubes and all.  

Click here to see our Apple Orchard page!  

It was a picture perfect Indian Summer today.  Sunny, warm, breezy and smelling like fall.  The trees are changing color.  To tell you the truth, I haven't been paying much attention to the foliage or tourists this year, but I know the trees are changing and I know the tourists are here!

Casey had a super day at school.  Nancy H said he would give him a 10 out of 10!  He was very appropriate (except for a bit of yelling during social studies), and got lots accomplished today.  He did his water displacement experiment with his pumpkin, drove his power chair to Mrs. Gage's class (she's teaching 1st grade this year) and visited with her class, was perfect during the school assembly that the 5th graders put on.  They presented a $13, 000 check to the Red Cross today for Katrina relief!  Gotta be proud of that!  He also did some math and worked on his DynaVox and had some fun playing computer, too.

October 5:

The boys have been doing really well. Casey has been having really good days at school. He's been more respectful (not "yelling" as much) and listening and cooperating and working on his school work and IEP goals. He comes home happy and TIRED! Colin has been doing really well, too. He's been on Miralax every day (instead of every other) off Reglan, and hasn't thrown up or been uncomfortable. He's been sleeping pretty well, too. He's been very into TV school. He has a new Communications Facilitator (CF) who he really seems to like. Today we went on a field trip with his pre-school class. Here's the link to our trip.

http://www.our-sma-angels.com/oneills/colinappleorchard

Gene is doing pretty well, too. He is back in Physical Therapy for his numerous aches and pains but it really seems to help. He's really proud of some new technology that he has had a hand in at work. Something about cameras and such.

I just got a call today from my mom. My dad has to go in for angioplasty on Friday. He doesn't like to reveal much, but I guess he has been having pains for a while and they've been watching him. So he had some lab work done today and Friday they will do the cleaning out. They're not sure if they will have to put a stent in. It stinks that we're all up here and can't help out. My mom doesn't drive any more. They have a friend (who is older than them!) that will drive dad in and mom can stay with. He may not even have to stay the night. We'll see.

Me, I've been feeling kind of punky. Kind of depressed. This is not like me at all. I am getting through the days fine, just not getting much accomplished and not feeling like doing much. I haven't felt like talking with anyone, either. So if I'm absent from here, that's why.

October 6:

Happy Anniversary to me and Gene!  15 years!  Poor Gene, I was not in a very good mood today.  Just blah.  Gene brought me a dozen roses after work today.  Very pretty yellows, and pinks.  We didn't do anything special.  We were thinking of going out to dinner but we would have had to bring Colin (Casey had a nurse).  We decided to wait.  

October 7:

Where do I start? So sorry to hear about yet another two victims of this disease--. I'm sending prayers to the families of Rhine and Christian.

My dad had angioplasty this morning. He was worse than they thought. Finally, my mom found out he will need a quadruple bypass. He's staying in the hospital until surgery which is tentative for Monday. He's on two drips, nitroglycerine and something else. He got up and walked for a while tonight. He has a retired physician friend that's helping him through all this. My mom is pretty fragile. She can't really take care of herself physically. She doesn't drive anymore. She has RA pretty badly and can't even tie her shoes. I can't even go down to FL to help because of the boys...well, I possibly could some how, but it wouldn't be easy. AND, I can't even fly because I don't have a picture ID and DVM is closed for the long weekend. Aunt Chris will probably go down. I hate to put it all on her. She's more emotional than I am (one thing I've learned with SMA is how to be strong when it's needed most).

Then, I JUST get a phone call from one of my best friends from High School. I don't see her much or even talk much anymore but she's always out there for me. Well, her husband, our friend, just died. He was 41. He was an alcoholic. He and Maria had hard, hard times. He just could never give up alcohol despite lots of help and rehab several times. He was a very fun, friendly, book-smart guy who would do anything for you. I'll always remember how he would drive out to the other end of the island (LI) to come and get me, and bring me to their house, when I was down visiting my brother so we could all get together. Of course, I can't go down there either. She has lots of support but I would have liked to have been there.

There's more, but I'll stop here since I'm depressing my already depressed self.

************

Stay well prayers, and get well prayers are being sent from me. Jerika, so good to hear how well you're doing!  Laura, best wishes for a successful fundraiser!  Madison B, we're sending you special, secret get well kisses, okay??  MJ, I hope you find Wright State as awesome as you have hoped!

And, everyone, I'm thinking about you all.

October 9:

My dad has his quadruple bypass surgery tomorrow (Monday) at 6 AM. If you have a prayer list, or a 'get well' list, please put my dad on it. I'm actually feeling pretty good about his surgery. He has an excellent doctor, and he really is in good physical and mental shape. My sister will be down there later this evening. She'll be a big help to my mom. Thanks, guys.

October 10:

My dad is out of surgery and he did well. They ended up doing FIVE bypasses, three from his leg and two from his mammary area (?). They now have to wait to make sure he wakeups on his own and all that kind of stuff. Thanks for the continued thoughts and prayers.

October 11:

My dad seems to be doing well. I spoke with him this morning. He said he was going to audition for Sponge Bob because his voice was so funny after being extubated! He certainly still has his sense of humor! He still has lots of tubes but he feels okay. The docs said his heart was very strong and healthy, just those darn arteries. Mom and Aunt Chris were going over today. He slept most of the day and night yesterday. Thanks for the continued thoughts and prayers!

October 14:

From Laura Stants:  

"Of the SMA Support $1 fundraiser things that came in, I haven't had time to send to everyone everything, but I had to pass this one on.
 
$10 came in from a Ms. Philomena Nardozzi for Casey & Colin.  In it, she wrote this:  "Enclosed is $10 for SMA Heroes Casey & Colin.  Although I do not know Casey & Colin & their parents, I remember their grandparents.  Bob Canosa was the principal in the school where I taught and he earned my respect and gratitude for his leadership.  Philomena"

October 15:

Well, yesterday Colin did a "dippy". His sats went down to low 80s. He was fussing during the shower and when we got him out we suctioned, vented his belly, in/exed, put on his probe, did some blow by. He came up fine. He's been extra, extra spitty, and kind of egg whitey stringy spitty. He sounds nasally but nothing in his lungs. He is wanting bipap but is in a fine, silly mood. Prayers that he gets over this quickly would be welcomed!

6:45 PM  Well, I started with a post nasal drip and sneezes, sneezes, sneezes, watery eyes, etc. It really feels like a cold, not a flu, so that is good.  Colin is hanging in there. He's been wanting lots of bipap and his heart rate still is high with it. He also actually dripped "snot" out of his mask! It snuck right out and dripped down. He's never done that before.

We've in/ex'd lots of times and he's had a shower to keep everything loose.  Casey sounds the tiniest bit funny. I sure hope it doesn't run through the whole house, including the nurses. So far it's just Colin and I.  Take care everyone!

October 16:

anmeiwithmyblanket.jpg (145337 bytes)

This morning MJ sent me an email from Pingrong, AnMei's mom.  MJ sent her a blanket from B4SMA and it is the one that I made!  See it, and see how happy AnMei looks!  She is a cutie, for sure!

October 17:

Colin is giving us a run for our money! He is certainly in a good mood (99% of the time) but he is being very demanding and not sleeping at night a lot.

Let me start over...

Colin had lots of secretions last week. I declared him having "a cold" on Saturday. He had woken up early but I convinced him to go back to sleep, which is very unusual for him. He had lots of secretions pouring out of his mouth and nose. Better out than in, we all say! He needed/wanted bipap a lot. He'd be okay off for a while, but having higher heart rates. He even had high heart rates ON bipap. His oxygen levels were fine. He never was below 96% Okay, so he was when he did his "dippy" on Friday, but what was because his neck was crinked and he had too much spit.

We made it through Saturday fine. He was happy and demanding. Only certain movies or shows could be watched. Casey was a trouper and mostly let Colin have his way. Nancy Lanza, Casey, Colin and I played our new Sponge Bob Life board game and had a ball. Then, Gene stepped in and played two boardgames of Shrek 2. Nancy L also played computer with the boys. I had a nappie. Nancy Hadd came in the evening and played more computer with the boys.

At about 6 o'clock or so, I declared myself as officially having a cold. I grabbed some cold medicine and within 20 minutes I had broken out in hives on my face and back and arms. I didn't check to see if it had Tylenol in it. Duh, I am allergic to Tylenol. I usually only buy Advil/Cold medicine, but Gene sometimes gets me generic stuff (gotta love him) and I had put all the cold medicine in one box in one of my Flylady fits. I let Gene and Nancy put the boys to bed. I got into bed and read and fell asleep EARLY.

Colin slept pretty well. He had one or two fussy periods that I heard, but Terry handled it fine and got him back to sleep. Wait, actually, I did come down once and crawl into bed with him until he fell asleep. Nights just kind of blend together in my poor sleep deprived brain.

Sunday, Colin was raring to go, babbling away. He thought he sounded so funny with his nasally voice! He still needed bipap a lot. I gave him some cold medicine, Tylenol Day, and he did fine with it. After a couple of hours, his eyes were looking funny. I asked him if he wanted a nap, He gave me his frown and said, "NO". Well, he fell asleep watching a movie, about half an hour after that! VERY unusual for him. He slept for about an hour and a half.

Colin looked better when he woke up. And, he was happy. Casey used his DynaVox. Nurse Sue finally got his hand/switch right while he was laying down. It is so hard and frustrating to do it! We will find a better way soon, I hope. When he's at school, he sits up in his chair and we have that setup down pat. He thought it was cool to show us the buttons that Priscilla made telling us what he did each day last week in school.

Both boys were in bed early last night. Gene read three stories to us while I lay sort of in-between both boys. Colin was sleeping well. I went to bed slept, too. At about 11:00, Colin was crying and fussing and having a fit. I heard Gene in with Terry talking to him and trying to settle him down. He wasn't settling, so I went down. I got into bed with Colin. I heard water in the bipap tubing so I tried to lift the tube and get the water to go back into the chamber. Terry and Gene had tried to do the same, but there was no water in it. I thought maybe there was water in the sensitivity tubing (we have the Knightstar 330) so we switched it out. I turned it off, and when we turned it on again, NOTHING! All we heard was a little pfft, pfft. All the while Colin is bawling and his sats are dipping. I had Gene get the S/T and we put him on that, and he calmed right down and slept well.  I was just on the phone with our DME. They will bring us a loaner bipap (hopefully a RESMED VPAP). Since we (insurance) JUST had the Knightstar repaired, to the tune of over $500, they have to check to see if the repair is under warranty. Of course, at this point, I don't even WANT this darn old bipap, so I'm going to pursue getting a RESMED. Sigh. If we didn't have the S/T (our DME GAVE it to us, but insurance doesn't know we have it) we would have had to make a 911 call. Colin was up in the middle of the night talking and wanting to play. It was funny listening to him and Terry "go at it." She tell him, "I have to go and get Casey's food, I'll be right back." As soon as her foot left the room, he'd cry! As soon as her foot entered the room, he'd stop!! Finally at 5 something this morning, she put on some Pooh Halloween movies for him.

He's been up since then. He's in TV School right now, on bipap.

I'll update on my dad later...I have two school meetings to go to this morning.

October 20:

I've been washing clothes, and spit cloths, catheters and blankets, bipap masks and cough assist masks and trach adapters for the cough assist. I've been spraying Lysol. I've been taking vitamins and Airborne, making sure the boys have extra, extra water. We're all sick! Poor Casey was "declared sick" by me last evening. He has lots and lots of secretions, some colored yellow. His numbers are fine. Terry did do a coughing set with him last night in the middle of the night. Colin is still sick, but, I think, on the mend. He must have the biggest sinus cavities in a four-year-old. His sats were 100% and his heart rate in the one-teens when I coughed him this morning. He had tons, and tons, and tons of secretions. Some were a bit tinged red. His numbers didn't waiver!

Casey had an appointment for a hair cut today, and we decided to keep it.  And, he's had a little eczema-like rash on his wrist so I called the doctor and he said to come over. Gene was STILL home because he felt cruddy, so he decided to go with Julie and Casey. Casey was prescribed some cortisone cream for his wrist. Dr. DiMichele decided to give him a flu shot right then. Since he didn't have a fever, he said it was okay. I thought this was weird since earlier in the week I was talking with his nurse, and she said Dr. D wanted to wait until more towards the end of October since the "split" vaccine that's given to kids doesn't last as long and he wanted his patients to be covered as long into the flu season as they could. (does that make sense how I wrote that?). Anyway, he's done--complete with Spiderman band aid. Dr. D. listened to his lungs and said he sounded great.

I'm really glad that Gene decided to go with Julie and Casey. Sometimes Julie takes Casey out on her own, mostly in Milton, but they have gone out of town. Well, Gene pulled into the parking lot of the hair place and the van was on fire! Right underneath the drivers seat, smoke started and then flames!!! Julie asked Gene if we had a fire extinguisher (which we do, but it was way in the back). Julie managed to put the fire out and get Casey out of his tie downs at the same time while Gene came around to the doors.  Pretty scary! Julie said I would have been screaming! As best as Gene can figure, some wire must have gotten worn down and then shorted out by one of the tie down straps. They made it home (after the haircut) and Gene unhooked everything electrical and will deal with it later.

My dad is STILL in the hospital. Long story short, he had an IV that infiltrated. They didn't treat it right away, so it stayed puffy and then they finally did something about it. He had been complaining that his leg was VERY painful where they took the veins out. Well, it was infected!  He's been on more antibiotics, as well as those leg wrap things and elevating it and they finally are starting to work. He's still walking like he should but getting up is a "10" for pain he says. He's in now until Monday. Aunt Chris is still coming home on Saturday. Mom will go to their friends house and stay with them until dad comes home. They have VNA nursing for him for 2 weeks. They also have a service set up that will do anything they need, like cook meals, shop, bring mom to appointments, etc.

Oh, the boys are off today and Friday, for teachers convention, so Casey isn't missing any school. We have to work on a book report and a current events presentation this weekend. Here's a photo today of Casey and Julie taken today. Casey doesn't look too sick, does he! It was Julie's birthday today so I made her "Sour Cream Fruit Salad". Sounds weird but it's delicious and it's what she requested.

Happy Birthday, Julie and Happy Birthday, too, to Aunt Peggy (Gene's little sister).

Julieandcaseyswingingonherbirthday0001.jpg (163025 bytes)

Okay, so now our portable suction went up in smoke! We just brought the boys into their sleeping room. Gene plugged the cordy thing into the DeVilbis suction unit and a few seconds later, I swear, the two lights started going on and off and then puff, and an electrical smell. Gene quickly unplugged it. Not sure what is up with that! Maybe someone dropped it, or got water on it?? Luckily, we have two plugs so we are fine, but what else can blow up today???

October 21:

Our doctor was just here to check out Casey.  I had asked him if he would have the on-call doc call in a script for us this weekend, if need be.  He had just seen him yesterday, but he wanted to see him again.  Casey has had lots of secretions and some yellowish stuff, too.  So he came out and said his lungs really sounded fine (at this second, anyway) but I told him we were using the cough machine every 20 minutes or so this morning.  He checked out his ears and saw a significant change from yesterday.  Yesterday he had his normal fluid, but today he had more fluid than his norm and it was a pool of yellow, he said.  So, he’s called in Zithromax for us.  He said it would help his ears as well as any respiratory stuff that may be brewing. 

He checked out Colin, too.  He felt Colin was doing well, and looked great!  His lungs were perfect and his sats and hear rate were perfect.  Usually, when Dr. D comes, Colin stresses out and high heart rates!  I guess he’s growing up!  His ears were fine.

So, that’s where we are this evening.  I’ve got Colin tonight.  Julie will have Casey, so Casey will get special attention from her!

October 23:

The boys are doing well.  Casey seems to be on the upswing.  He was probably at his worst Friday evening.  He’s been on Zithromax, which really seems to be working.  Colin is just about back to normal. 

Aunt Chris came back from Florida on Saturday.  The boys were excited to see her.  She brought them back some goodies, of course.  She brought them the DVDs Robots and Sesame Street Halloween.  Casey also got a navy blue T-shirt with whales on it and Colin got Spiderman boxers (his first pair!).  She also brought them a Mr. Potato Head pumpkin kit.  There are plastic face pieces that you just stick in the pumpkin instead of carving it.  We certainly have enough pumpkins to experiment with!  She brought me a pretty Halloween frame. 

Aunt Julia, from Ohio, sent some goodies to Grandma’s house.  We got them today.  Aunt Chris and I each got a cloth, hand sewn little purse.  Aunt Chris’s had four cute little hand made kittens in hers!  We also each got a “turkey butt” magnet she made from plastic canvas.  The boys each got a cute, cute, cute, knitted camouflage hat!  Colin’s has earflaps and ties under his chin.  They look adorable!  They also got some cute (yes, bats can be cute) felt bats that Julia made.  Gene got a dishcloth and a matching bag for plastic bags (he loves that stuff). 

Last night I stayed up until Terry came at midnight.  I had taken a nap so I let Gene go to bed early.  We are usually opposite, but he felt pretty cruddy.  Both boys fell asleep early.  I just put away clothes and straightened up and watched some TV. 

Today, Colin got up EARLY.  I brought him out into the yellow room at about 6:45 and tried to go back to sleep, but no go.  Casey slept in to about 9 and then just relaxed and had his Teddy Ruxpin for a while.  I ended up taking an early nap myself while Gene entertained Colin and Sue was with Casey.  

November 8:

Does anyone have an SMA Angel that has some connection to monkeys??  Actually, it doesn’t have to be an SMA Angel, it could be any angel at all, when I think about it.  Colin has been a little ‘distracted’ lately.  Whether he’s in school, or watching TV, or reading book, whatever, once in a while he’ll look up and away from everyone and make his monkey noises and ‘talk’ to someone.  He’s not anxious or anything—he’s happy when he’s doing it.  I just have a sense that he’s really ‘seeing’ someone or sensing someone.  Of course, I thought of an SMA Angel.  I know Nathan loved Tigger and sometimes sends signs as butterflies, and Jacob sends signs as rabbits and of course he was called “baby bear”.  Anyone have/know anyone associated with monkeys???

 

Thanks for all your replies to my "weirdest question in the world".  I’ll certainly be having a chat with Colin to see if I can find out if it’s Andrea’s friend or Nathan M. here with us! 

 

Also, I just got a phone call from our hospital.  A newly diagnosed family is on the peds floor with a four month old type 1 baby.  I’m going to see them on Friday.  I think the baby is having surgery on Thursday, I imagine a g-tube.  They want to talk, and find out “how I do it.”   What do you say to a question like that?  Of course, I’ll mention SMA Support (and give them a brochure) and the different organizations and bipap/trach/palliative care.  But I have a sense they need some emotional “how do you do it” help.  Any ideas?  I will bring photos of my guys and some of other kids that I have.  I have a Believe in Miracles bracelet I will give them.  And, I’ll give them MJ’s B4SMA card, and a Cole’s Quilt card.  I know they live in upstate NY, somewhere in the boonies and are having trouble getting services.  I’ll find out if they have a computer.  I’m meeting, briefly, with the social worker at the hospital that we know before we meet.  Can you think of anything I can say/do?? 

.........................................

Okay, so I've been neglecting my updates again!  I really hate when I do that.  I will miss remembering what has happened these past couple of months!  

November 10:

Gene is in Florida helping out my parents.  Long story, but he took a flight out yesterday afternoon.  He got to their house in Sarasota at 1AM.   Today he brought Dad to some doctor’s appointments.  His infection in his leg is FINALLY almost cleared up.  He should be able to drive but Gene drove today.  I think Gene will bring him on a ‘trial’ run somewhere.  He also brought them to their ‘hair dresser’ and to the grocery store.  He helped Dad make dinner.  I think it will be good for them to have him there.  Of course, he’s helpful, but they will still try to entertain and treat him like a guest, so it may help get them out of their funk and back into the groove again.  Gene will enjoy himself, also.  It’s going to be in the 80s all week!  He was in the spa and the pool today. 

I did something to my neck/back/arm.  I think it was from raking over the weekend.  I’m going to go to my chiropractor tomorrow.  It’s been tough carrying Casey and Colin, but you got to do what you have to do! 

I really think our ‘angel’ is a prankster.  The other night I was doing Colin’s cough machine in his bed in the wish room.  I put some saline drops in his nose, did a round, suction, etc.  I went to grab the saline vial and it was missing!  Colin laughed and laughed while I looked for it.  I checked under his pillows, his spit cloths, in his pjs, on the floor, the cracks of the bed, etc.  It was GONE!  I didn’t even move a step and it was nowhere to be found!  Gene looked and looked too.  I know I used it because I had the top of the vial…Then, Gene noticed that the suction wasn’t sounding very strong.  He noticed it wasn’t plugged in (I really thought I HAD plugged it in but that’s not the weird part).  He plugged the end into the suction and the lights didn’t come on.  He checked all the connections.  He plugged it into the wall instead of the strip.  Nothing.  And, this is the one that just went up in smoke on us and was replaced, so it’s new!  He went into the living room to get the other charger and when he came back—the suction lights were on and it was charging!!  Wild! 

Colin had a sub for school the other day.  We’ve known her for a while and she worked with Colin in the beginning of the year before we had Shannon, and she also works with Casey, so she knows us well.  I was listening to them the other day during class.   Colin was doing his monkey noises.  She said to Colin, “what are you looking at?  What’s so funny!  Do you see a monkey??”  She had no idea that we’ve been suspecting that we’ve had a heavenly angel with us. 

Last night, Colin woke up at 3:30 AM.  Nurse Terry was doing something to Casey and Colin woke up and gave her a hard time.  He was awake the whole rest of the night, laughing, talking and making monkey noises!   I heard Terry ask him what he was looking at, too, and I hadn’t said a word to her, either!

I spent a couple of hours yesterday at the Bake Sale for Casey’s team.  It was a lot of fun.  The kids come and help, too.  Casey came for about half an hour.  He had a button on his DynaVox that said, “Everything is 25 cents!”  It was cool. 

Oh, we also had a meeting at school with the nurses and Casey’s CF and Meagan (his case manager and special educator).  It was a great meeting.  We are going to try to cut back on some of the verbal cueing and stimulation that Casey gets at school.  We think it may be too much for him, which is why he yells so much.  Priscilla (CF) will point to his DynaVox and have him tell her what he wants instead of trying to reason with him and ask him to be quiet, and asking him if he has something to say.  And, the classroom teachers will now give him a verbal warning and show him a card as a warning.  Then, if he still continues with the same behavior, he will get a yellow card and have to ‘color a yellow’ for the day.  If he comes home with a yellow, he only gets ˝ hour of computer time.  A GREEN gets him unlimited time.  A RED gets him NONE.

I won’t see the newly diagnosed baby until next week.  The peds nurse called and left me a message telling me that the baby was discharged as he was doing well, and was coming back for g-tube surgery next week.  The family has friends coming in from out of town to meet the baby and didn’t want to stay in the hospital any longer.  I hope to see them next week.  I am going to try to find out if he is getting a nissen as well, and give my two cents on the whole reflux thing.  Not sure if I’ll get to do that but I’ll see.

We’re looking forward to hosting Mr. Bear.  I hope he’ll have a chance to go to school with Casey as well as spend Thanksgiving with us. 

Thoughts and prayers going out to everyone!

November 22:

Sending out prayers for everyone, especially the sick ones, Ethan, Erinne, Olivia, MJ, and Annah.

Colin threw up twice this afternoon/evening. The first time was quite a bit of food and secretions.  The second time was mostly yucky secretions.  I’ve been trying a different diet with him and I don’t think he likes it!  I probably should have started it slowly but I went full force and changed a lot at once.  And, he ended up getting orange/tangerine juice because that’s what we had…He’s had it before and done okay, but I wonder if that was bugging him.  Plus, he’s getting some Safflower oil and I started him with a teaspoon right away instead of working up to it.  So, I think we’ll go back to what we were doing before, get settled again, and maybe start SLOWER with the new diet.  He’s also been having higher heart rates these past few days, lots of bipap air, and needing more bipap, too.  So back to what we know works!

Casey went to see the new Harry Potter movie this afternoon.  He went via the SSTA, (special services transportation) with a nurse.  It’s only a dollar each way, which is even cheaper than gas for the van!  Anyway, the van is not inspected and we’re having lift issues, so this worked out well.  They met Nurse Terry there.  Aunt Chris was able to meet them, too.  She works close by and finished her parent/teacher conferences early.  He really enjoyed it.  I hope he doesn’t get nightmares from it.  It’s PG-13 so I was a little nervous sending him.  He did hear the book on CD.  Anyway, they had a blast! 

We’re getting some nasty winter weather here.  Aunt Chris brought her PJs with her and is staying the night.  We’re all hunkered down for a nice winter evening.  Mr. Bear should arrive tomorrow!

November 23:  

The next several entries will be by Mr. Bear!!  Click here for ALL of Mr. Bear's adventures and pictures of him with the families!

Well, I was hoping for a nice rest while I traveled up north, (James is a BUSY guy) but those UPS workers sent me on a perilous trip! I made it safely though--Phew!

I arrived at the O'Neills in Milton Vermont around noon time. OHHHH, it's cold up here! There's snow on the ground, too. The boys were home since it was school break time.

Casey was very happy to see me! Colin was a little unsure at first but then he warmed up to me. We mostly just hung around and got to know each other.

Sue and Gene are the parents and Casey and Colin are brothers who are 8 and 4. They also have a dog named Sasha and a cat named Sister. Gene warned me to stay away from Sasha because she has been known to love to snack on stuffed bears.

November 24:

Today is Thanksgiving! We got to watch the famous Macy's Thanksgiving Day parade in our pajamas!

Oh, Casey lent me his friend Teddy Ruxpin's pajamas while I am here. We loved watching all the floats. We especially loved Sponge Bob, Big Bird, and Chicken Little. SANTA CLAUS was on a float at the end of the parade!! Aunt Chris came over early because the weather was supposed to be stormy and she wanted to make sure she could get here. After we got dressed for the day, we played some board games.

We played Candy Land and the Disney version of Sorry. Gene went and picked up Grandma and Grandpa O'Neill. The house smelled sooo good! Lots of cooking going on!

I got to sit at the table with everyone and we all talked and talked and laughed. It's nice to be part of such a cool family. Casey and Colin each made a project telling what they were thankful for. They both included me, Mr. Bear, on their list of things to be thankful for!

We also watched Madagascar. This was the second time I got to see it because I got to watch it with James in South Carolina!! Sue and Gene let us stay up until 8:30 so we could watch A Charlie Brown Thanksgiving.

No one wanted to fall asleep because we had such a good day and didn't want it to end!

November 25, 2005

We had a pretty quiet day today. I got to play computer with the boys and Nurse Nancy Lanza. Casey and Colin love to play computer games and now I do, too!

November 26, 2005

Today's highlight was going to the movie theater to see Chicken Little! It was funny! We all laughed and laughed! I think EVERYone should go see this movie! 

November 27:

Sunday is a quiet day around here. Casey likes to sleep in. When he got up we listened to Teddy Ruxpin. Then we watched Madagascar in bed! Sue went out shopping so I stayed home with the boys and Gene. Sundays everyone has to get things ready for school. I had to get ready, too, as I am going to 3rd grade with Casey tomorrow!

Casey was so excited he wouldn't go to sleep. Colin conked out pretty quickly but Casey just kept talking and talking. I had to work my magic with him and I finally snuggled him to sleep!  Oh, Sue picked up some treasures for me.  I have a special Vermont Key Chain, Vermont pencil and some pretty picture postcards so I will always remember my time with the O'Neills. 

November 28:

3rd grade is terrific!   Priscilla (Casey's communication facilitator) programmed a button on Casey's DynaVox so he could tell the class all about me.  The kids are all very nice and interested in me.  They learn a lot of stuff in 3rd grade! 

I really enjoyed hanging out with Casey and seeing him talk on his DynaVox.  I also liked driving through the halls in his power chair! 

He doesn't go too fast so I wasn't so scared.  There's always something going on in Casey's class and lots of kids to talk to.  Riding the school bus was an experience, too! 

After we got home from school we got to relax and watch TV.  Casey has to go to bed early during the school week and I understand why! 

November 29:

I had to say good-bye to Casey this morning.  I hugged him and then watched him get on the bus while waving to him from the kitchen window.  I watched a little bit of Sesame Street with Colin and then I had to hug him and say good-bye.  It was sad, but I look forward to meeting another cool family!!  Tomorrow I start my journey to the Pruitts in Kentucky!  It was nice visiting Vermont and meeting the O'Neills but I know I will enjoy myself with the Pruitts.

December 4:  

We all have very sad hearts today.  Here is an email from Morgan's (SMA type 2, 3-years-old) mom.  We were privileged to meet Morgan and her family at the SMA Gathering in VA Beach this past August.  

Dear Friends and Family,
 
It is with four very heavy hearts that we are telling you that Morgan earned her angel wings last night.
 
She was the happiest, smartest, and most vibrant little girl we have ever known. The PICU doctors at CHKD did everything they could to keep her alive.
 
Thank each and everyone of you for your support and prayers.
 
All of our love,
  
Stacy, Bill, Zeke & Clayton 
 
SMASupport has a guestbook where so many people that were touched by Morgan have left messages and posted pictures of her ~ please visit this beautiful tribute to Morgan http://www.smasupport.com/guestbook/
 
Please also feel free to visit her web site at:
http://www.our-sma-angels.com/morgan/

morgan5.jpg (55221 bytes)

December 9:

I forgot. Colin got his new stroller the other day. It's not fitted to him yet, but here he is in it for the first time!  And, the other morning we stuck him in Casey's wheel chair. It's so weird to see him sitting up without his bipap. Usually, he can't do it but first thing in the morning he can sit up without choking. We usually sit together in the morning so he can enjoy being upright without bipap.

December 10:

This is the second year we've brought the boys to the St. Mike's Christmas Party for Alumni. Both Gene and I graduated from there.  Anyway, we had a good time. Don't cringe when you see Colin on Santa's lap--we threw all caution to the wind! The boys enjoyed the Christmas skit, the crafts and, of course, SANTA!!

December 15:

Colin  was SUPPOSED to help me make cookies, but he was NOT interested. I guess I really can't blame him! Anyway, I did take pictures of him posing by the tree. He has a Santa hat on, but I just realized it looks like he just has a white fur hat on! Anyway, they're kind of cute.  I'll post them on the site soon.

December 19:

Mom and Dad arrived today!  Aunt Chris picked them up late in the afternoon and they came right over.  I had made meatloaf, mashed potatoes, peas, carrots and home-made wheat bread for dinner.  Dad looks good, but skinny.  It's weird seeing him that way!  I also made some rice pudding with raisins for dessert, in hopes of putting some "good stuff" in him!  Gene didn't go to work today.  We shopped for a bit at Hannaford's together.  I am always amazed at what a pain in the butt he is to shop with!  We wanted some peppermint stick ice-cream so we asked the person stocking if they had some.  YUM, they did!  I also punched in some photos to be printed at Kinney's of Colin and Casey with the reindeer and sleigh from Gramps.  Gene picked them up for me later on.  

We tried to have both boys sit with us at dinner but Colin was a grump!  As soon as we put him in his new Easy S stroller, he had a fit!  Gene ended up sitting with him by the TV while we all sat at the table and talked and had dinner.  

We had a hectic evening.  Mom and Dad were still here, Colin was a grump, Casey had tons of secretions and it was time for bed.  Colin went through 3 sets of pajamas.  The port on his tube kept opening up and soaking him!  Casey was breathing REALLY fast and had tons of stuff in his chest.  I ended up using 3 saline bullets and a saline neb to try to break it up.  I got out some little round, yellowy plugs which is unusual for him.  It's probably because he was on his "nose" since early in the morning.  We didn't put him back on the heated humidifier when he got home since he wanted to stay in his chair and play computer and then hang out with Grandma and Grandpa.  Anyway, I thought the PEEP valve was malfunctioning so Gene changed it.  It ended up being that one of the sensor tubings was loose so the vent was auto-cycling.  Julie was on for the night shift, so Colin was with us.  He wouldn't go to sleep for us, so Daddy had to go up and lay with him.  Casey was up and "yelling" until 9:45!  Don't know what was up with him.  He should have felt much better after I got all that junk out of him.

December 20:  
Happy Birthday to my dad!  I wonder if he'll be mad if I say that today he will be 80-years-old!

Nancy Hadd got a huge, yellowy, plug out of Casey this morning.  It must have been lingering in there for a while.  He was in a good mood, and had slept well, so I think he's fine.  Julie checked his ears and they looked fine, too.

I made Dad a birthday cake this morning.  I made a yellow cake and split the layers so that I could put a layer of raspberry jam inside.  Then I frosted it with French Vanilla frosting.  It should be good!  I'm waiting for mom and dad to come over now.  I'm a little bored.  I didn't want to take my nap since I wasn't sure when they were coming over.  Gene went to his parents to pick up Avon and give his mom a check.  He ended up getting a physical therapy treatment for his shoulder as he dropped off a check for Sylvia and she had a cancellation.  It's snowing pretty good right now.  It's pretty, but the visibility looks like it might be getting a little poor.  The squalls are supposed to end shortly.  Oh, Gene brought over a tin of my raspberry all-spice cookies, milk chocolate and white chocolate covered pretzels and some fancy mints to Bill Lambert across the way.  I also sent a tin of goodies with Julie for Gramps, as a thank you for giving the boys the reindeer sleigh.

Both boys were out like lights tonight!  They were both asleep by 7:50 PM!  I got some more yucky stuff out of Casey with the IN/EX.  Hopefully, that's the last of it.  Colin has had a high heart rate most of the day.  His sats have been perfect.  Gene checked his balloon on his G-tube and found that it only had 2cc of water instead of 5cc so he re-did the balloon.  

December 26:

We've had a wonderful couple of days!  Christmas Eve day, both boys had their hair cut here.  Kris came over to do the cuts.  They were both pretty funny.  Colin wanted her to stay and do more!  Then, I gave Casey a shower and then Nancy L gave Colin one.  Aunt Chris was over for a bit and brought us lunch.  Yum.  Then we had to hurry and get dressed and set the table and get straightened up for Grandma and Grandpa O'Neill's visit.  

December 29:

We’ve had a nice, nice Christmas-time.  It wasn’t too crazy, which is always a bonus!  Mom and Dad spent a lot of time with us, and the boys, at our house.  We also went out to lunch a bunch of times and did some shopping.  I have to say, my dad is a much more fun shopper than Gene.  Gene ‘dogs’ my heels and makes it not very fun to browse around!  Dad bought me a pair of corduroy pants and a velour ‘hoodie’ that HE spotted in Filene’s.  Okay, so Gene is a good shopper when I’m not around.  For some reason, he had it in his head that I needed/wanted a black pearl necklace.  He looked and looked and couldn’t find one, but he did find a beautiful necklace with pearls and black onyx and gold beads.  He’s NEVER bombed out in shopping for jewelry—go figure!  Mom and Dad keep saying that we’re going to pare back at Christmas but they went overboard once again.  I can’t wait to try my new printer/scanner/fax/copier!  I haven’t had a working scanner in ages…And, we love our new coffee brew station and my sleek, bread box.  The boys got a new portable DVD player.  We had one that lasted two years but finally is breaking down; the volume is poor and we have to duct tape the cover down to play discs!  That DVD player went on many trips, from Vermont to Florida and back, Massachusetts many times, and to Virginia Beach!   Mom loves her calendar that I created for her from Kodak Gallery and Dad loves his sweater that Gene picked out, and the Renee Flemming, Sacred Songs CD. 

Aunt Chris is at Bobby (our brother) and Brenda’s house in Virginia.  Caitlin (niece) celebrated her 18th birthday on the 26th.  Aunt Chris has not missed one of her birthdays except for the day she was born when we all visited a couple of days after her birth.  Mom and Dad didn’t go down this year.  Dad is still recovering from his heart surgery and Mom’s arthritis makes it hard for her to travel.  And, they did both turn 80-years-old this December!

Colin had a bad crash.  Wednesday, I was out with Mom and Dad and Gene was out doing his own thing.  The boys were home with Nancy L and Nancy R.  Nancy R and Casey were in the “yellow” room-playing computer.  Nancy L and Colin were in the living room hanging out.  She said Colin sounded like he needed to be suctioned, so she did, but didn’t get anything out.  Then, his SATs started to drop.  She yelled for Nancy.  Between the two of them they suctioned, in/exed, vented his tubing, delivered oxygen (which we haven’t had to do in over a year) and got him back up.  His heart rate started going down when he was at his lowest O2 saturation of 32%.  Thank God, he started coming back up.  He started crying, and that’s when they knew he’d be okay.  He was scared for a bit, and rested on bipap.  They called Gene to let him know and he talked to Colin and he sounded fine.  I didn’t find out until I called home from Aunt Chris’s condo.  Mom, Dad and I went home shortly after.  He really is fine, but I’ll be monitoring him for a while to make sure he didn’t aspirate. 

Back to Christmas…Christmas Eve we had Grandma and Grandpa O’Neill over for a roast beef and trimmings dinner.  We cooked and ate and chatted and opened gifts.  Grandma and Grandpa LOVED the candles that Casey hand dipped in school

Christmas was fun!  Nancy H came at 8 AM to help get the boys ready.  We came out and opened Santa gifts and both boys were VERY excited!  As a joint gift they got a 4 foot high Official Lionel Train crossing tube bank that makes train noises with lights that flash when a coin is put into it.  Well, Santa must have had an issue with it, because the lights don’t work.  We will write him a letter to let him know.  Casey got a super, super fun Arcade-style switch accessible computer game.  He played it today (Thursday) for about 3 hours straight!  It’s awesome.  He can navigate through all the games without ANY help.  There are maze games and racing games and space invader games.  They have different levels and also have a Hall of Fame that shows his scores!  Colin got a game that he played in Pre-school, Coconut Drop.  It’s a lot like Kerplunk but it’s with a palm tree and fronds with a monkey on top.  Santa also gave them a bunch of cool computer games like Jimmy Neutron and Buzz Lightyear that we will play hand over hand with them. 

I could go on and on about their gifts!  I guess Casey’s favorite is his idog from Aunt Chris.  It’s a little dog that you plug into any headphones jack and it hears the music and lights up and moves his ears and other cool things.  He listened for about 12 hours straight on Christmas.  He’d let us turn the music down and he’d converse with us, but WANTED his DOG ON!  Colin loves his Coconut game and some Disney cars that he got.  AND, he loves his Charlie and the Chocolate Factory DVD and the Disney Three Musketeers. 

Later on Christmas evening, Peggy (Gene’s little sister) came over.  We did the gift thing and played with the boys and then put them to bed.  We hung out and talked for a little bit, and then everyone was tired.  Peggy stayed over in our “guest” room for her first time.  In the morning she made us breakfast.  We convinced Gene to go out and get us basket style coffee filters so we could use the new brew station.  We had OJ, ham, cheese, onion and green pepper omelets, home fries and toast.  Yum.  We played with the boys for a while and then she had to go, as the weather was looking crappy. 

There’s more, but this has gotten long enough!   

December 31:

Just a quickie.  Wondering what anyone has used for breakdown under trach ties, or any breakdown, I guess.  He had a patch a couple of weeks ago, but I thought it had gone away.  Now it is red, flakey, wet and dry all at the same time.  He’s having a tubby now, so I’ll look at it better after he gets out.  I’ve used Aquaphor and Lanolin and different baby creams for butt break down and bipap bites, but not sure what to do for this. 

Our nurse was telling us about a girl she takes care of that has toes that cross and she gets similar patches.  They use a tea tree oil ointment.  I know many of you use the tea tree oil with a mix of water.  Have any of you seen the ointment???

HAPPY NEW YEAR everyone!  We’re going to try to stay awake tonight.   We’ll see.  

NEXT FAMILY JOURNAL

 

Hit Counter