The O'Neill Family Journal!

Happy NEW year everyone!   Please pray for a cure for Spinal Muscular Atrophy!!  This could be THE year!

January 1-June 15, 2004

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January 1, 2004!

Yesterday Casey had an appointment at our local hospital in the Children's Specialty Center to try the "vest". We had to bring Colin, too, as we had no nurse for him. So, off we go. Gene dropped us at the front and went to park the van. We were miraculously a bit early, so Nurse Sue wanted to get a drink in the cafeteria right inside the lobby. I said I'd stay with both boys. Nurse Sue had really bundled Casey up so I asked him if he was ready to have his mittens off. He blinked, "yes". So the mittens came off with a dramatic flourish. Then I asked if he wanted his hat off. More blinks. I whipped off his hat. Then I asked him if he wanted his "gray thing" off (it's a head master collar we use when he's riding in the car/bus, but we call it his gray thing). He blinked yes again, so I undid the Velcro on one side and "voila" ripped it off, along with his trach ties and HIS TRACH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!! I freaked! I didn't want to leave them alone, but I had to make a choice. I ran into the cafeteria and yelled to Sue. Then I started pushing both boys to the Children's Specialty Center, also right in the lobby. I yelled to the receptionist that we needed a room. I started right back and she started asking me all these dumb questions. I ran into a room and started undoing his straps and pulling out his bag with his spare trach and supplies. Sue was there by this time. We both were doing what we needed to do. Then our pulmonologist came in and his RT and all sorts of people. Sue was all gloved up and ready to go when Gene came in. Gene is ALWAYS the trach changer. For some reason, he's the one who likes to do the trach changes and the g-tube changes. Sue had changed Casey's trach once about 4 years ago! I was seeing secretions come out of his hole. He was breathing fine. We put Colin's SAT monitor on him and he was 98% and 140s, which is a high heart rate for him. Gene got it in within seconds. Of course, I wish we had his cough machine. We had him all fixed up and calmed down and then we tried the vest. He cried BIG tears at first and every time I tried to talk to him he'd close his eyes and not respond to me. After awhile he seemed to like it better. He used it for 10 minutes, stopped and then did 10 more. He was using the smallest "full" vest, I think they called it. We're going to try it at home for 30 days and see if it's beneficial. The RT didn't think it really was much "better" than manual CPT, just that it was easier. Anyway, that's my story of Mean Mommy of the Year! 

January 24, 2004:

Casey had a really nice birthday.  The only thing missing (well, that we had planned on) was Grandma O'Neill.  She's in the hospital with a BAD gall bladder.  She's having surgery to remove it, but not until Monday.  So, Aunt Peggy is up from White River helping out and visiting Grandma, so she was able to come for his party.  We called having Aunt Peggy here on his birthday 'the booby prize'!  (Sense of humor here, Peggy!)

Casey woke up in a happy mood.  He definitely was excited for his special day!  Sue and I gave him a shower so he was all fresh and clean and spiffy.  We bundled him up and he and Nurse Sue went off to school.   Gene went over later with the cupcakes I had made.  He said one of the boys whispered "Oh, I think he's got cupcakes in there!"  Casey enjoyed making air popped popcorn for the kids.  And, all the kids enjoyed the cupcakes.  There were only about 8 kids in class today as many were out with the yucky stomach bug.   So Casey gave away some cupcakes to some of the other teachers. He gave one to Sharyn, the bus driver, and Kim, the bus aide.  Sharyn surprised him, on the bus run home, with a birthday balloon bouquet with purple and blue balloons and a mylar football balloon!!! 

Nancy L. (Colin's nurse and I) decorated the table area with balloons and streamers and all that kind of stuff.  Julie had already done Casey's room and entryway.  Nurse Terry came to visit and drop off a gift for Casey.   She and Colin had a good time playing "bat the balloon"!

Casey came home and relaxed for a while.   Aunt Chris came and then Nurse Nancy R came for Casey.  We got Casey up in his chair and started opening cards.  He got lots of cards from Hugs and Hope!  Then Aunt Peggy and Grandpa came with Chicken Charlie's.  We pigged out on that and then dug into the gifts and more cards!  Casey really enjoyed himself!  He was amazed with all his different gifts.  He got Clue Jr., an electronic football game, LOTS and LOTS of wonderful books, a swimming dolphin lamp, and a dancing dolphin lamp, a yellow sleeveless jersey, a TOM BRADY #12 football jersey, Country Bears DVD, Sponge Bob DVD, Baseball Bloopers video, oh, and SO much more!  He was very DELIGHTED!!!!!!!! 

Casey and Colin put out his birthday candles with the candle snuffer.  Casey was very generous and let Colin do a couple!

January 24:

Pretty quiet day today.  Casey was up early.   Guess he was still on school time.  Nancy H and I brought him out to the living room before she left at 7:30 AM.  We watched his NEW Wiggles video!  Got Colin and Gene up and surprised them by Casey already being in the living room! 

Darla came at 10AM for Casey.  We gave him a shower.  Then Casey, Colin, Darla and I played Clue Jr.  Casey won, of course!   It was Colonel Mustard at 2:00 with Coke.  Then they played Mr. Potato Head Yatzee.  Casey and Colin loved it!  Colin took a nap while I read more of Angels and Demons (Dan Brown).  Gene was at his parents helping out and trying to get the other car started.  Very cold today.  Wind Chill Advisory in Effect. 

January 28:

Well, Grandma had her surgery laproscopically and is HOME!  Once they decided on doing the surgery, everything went quickly.   Peggy is actually home in White River and working today.  She has done an amazing job of helping out.  I feel that I wasn't much help, but being with the boys and being short of nursing, that's the way it was.  Peggy worked her butt off cleaning up Main Street and making things look nice for Grandma and Grandpa.  She went through all sorts of boxes and cabinets, etc.  Julia didn't end up coming because of the weather and all.  Grandma certainly is glad to be home!

Jennifer came for Collie today.  We gave him a tub bath and they played.  He even let her "fix" his hair! 

Casey is asleep in bed. He is all snuggled in and humming in his sleep.  I hope he has good dreams!  I sent Gene up with Colin tonight because Colin looked like he had a lot of "awake" time left in him and I didn't want to have to fight with him to go to sleep!  Colin had a great sleeping night last night.  He had a HUGE poop before bed and I think that really made the difference.  He didn't have all that gurgling going on in his belly!

January 29:

Busy morning today.  Pam came for Colin.   She definitely said his knees and hips are tighter than she's seen them.  We did get him in the stander and had to make it taller.  Seems like he's had a growth spurt.  She said that sometimes when you have a growth spurt, the bones grow faster than the muscles so that may be why Colin is tight right now.  So, we're to put his leg wraps on and put him on his belly two times a day for about 15  to 20 minutes at a time.  Tami came for a co-visit.  We didn't get too far with that because we had to fiddle so much with Colin in the stander.  He really needs his bipap when he is up high and it was hard, to nearly impossible, for him to play with anything on his tray because he couldn't see it!  Tami (Ms TV hater) even put the TV on for him because at least he was occupied and distracted while he was standing.

Then, Barb Vezina came and took me out for a bit.   We picked up my photos from Christmas, Aunt Chris's birthday, and Casey's birthday from Kinney's.  Then we went to Rosario's and had a nice relaxing lunch and chatted.  When I came home, I went up to see Colin and Nancy, and then JULIE dashed up the stairs!  WHAT????????   They were supposed to be at SCHOOL!!!   Julie said Casey was a little blah and didn't want to do anything and they couldn't engage him in ANY task   They stopped at the nurses office and he had a temp of 100.3.  She caught Sharyn and got the early bus and they were home by 2:15.  Julie got him in his PJs and snuggled him in bed.  I went down and asked him if he wanted me to get in bed with him and read our Herbie Jones book and he said "NO"!  He fell asleep and would have slept forever, but we woke him after an hour.  He seems fine, no extra secretions, just kind of poopy tired.

COLIN'S WISH WAS APPROVED BY THE Make-A-Wish BOARD LAST NIGHT! Abbey from  MAW just called me and was sooo excited! His wish is to have a room where he can swing all year round. We have a garage, right off of Casey's room, that we/they will convert! They approved sheetrock and flooring and heat and two swings of our choice!!!!! We are hoping that the Vermont Center for Independent Living will help us with a driveway access activated by their switches!!! . Now we just need GENE TO GET ALL OF HIS JUNK OUT OF THE GARAGE!!!!!!!!!!!!!!

January 30:

Casey stayed home from school today.  He really is fine, but I don't want to tax him too much so we gave him a break today.   Sue was sick, so Nancy H came in at 9:00.  Darla stayed until then.  We didn't do too much.  I tried to clean/straighten the bedroom.  The boys played some and Casey read tons of books.  Colin was up in his crib for a nap for two hours but never slept!  He's in a fine mood, though!

January 31:

Casey went bowling today!  Nurse Julie, Gene and Casey met Peggy and Joseph at the bowling alley.  They had a great time!   They played a full game and Casey was winning the whole way through until the last frame when Daddy tied him and then Julie beat him!  They played part of a second game, but then Casey's battery started beeping for low power.  On the way home Gene tried to use the cigarette lighter plug but it didn't work.  They made it home fine.  Colin had a tub bath and we enjoyed some quiet time and a nap while they were out.

April 24 & 25:

Well, what a weekend!  It was sooo windy!   We really wanted to get some stuff done around the house and outside...but we had no nurse during the day so we were limited in what we could do.  Gene ended up going out and doing errands and picked up Aunt Chris' bistro table from Home Depot.  Then, he came home and Aunt Peggy came over.  They worked and worked on putting up the temporary "shed".  They had a rough time following the directions and fighting the wind, but I really think they actually had a good time spending the afternoon together!  Nancy Hadd came at 4PM so it gave me a little more leeway so I could get out and work outside.  I raked some and cleaned up around the blueberry bushes so we can mulch them and I dragged some branches to the brush pile. 

Aunt Peggy was thinking about sleeping over, but in the end she stayed at Grandma and Grandpa's.  Casey wasn't too disappointed.  

Sunday morning Grandpa, Aunt Peggy, RJ and Tyler came over early and worked their butts off moving stuff from the big shed to the temporary one.  The boys did a really good job.  We also had time to move some wood and get rid of some of Gene's junk wood pile. 

April 27:

We had pulmonology appointments today for both boys at the Children's Specialty Center. I just got up from a nap because I am exhausted! Actually, it wasn't even stressful. I was thinking about last time we went when I pulled Casey's trach out while we were in the lobby! No mishaps this time!

Dr Lahiri said Colin looked wonderful! He was sooo pleased with his movement and his color and everything. He said his lungs were crystal clear with amazing air movement throughout. He said Casey was a true wonder boy! He said he sounded perfect and was happy he had such a illness-free winter despite going to school and being around germy kids and being tired out every day from his long school days. We made plans for Casey to go back in June to evaluate his trach size and all. They will take an x-ray and look at placement and then they will do a flexible bronch through his trach tube. Dr Lahiri and our favorite PICU doc, Dr Heath, will do it in Ambulatory.

Dr Heath came down to visit us and was so pleased to see Casey sitting so straight. He was the main doc during Casey's scoliosis surgery stay. We did decide to get some blood work done at my suggestion. I quickly called Karen this AM to ask what I should get! I've never had their amino acid profiles done before. This is what I had saved on my computer from other families so I asked for these: **fasting quantitative plasma amino acids, basic metabolic panels, mg, zinc, phos, creatine ) **metabolic acidosis **Complete Metabolic Profile and an amino acid screen I'm sure some of those are overlapping and/or other ways to say the same thing, but he seemed to know what I was after. So they sent an IV nurse down and she was amazing!! She was nervous, as I had told her what hard sticks they are, but she took her time and searched and searched and did each boy on the FIRST stick!! They seemed pleased to have the same type of bandages as Daddy comes home with after he has donated blood. Poor Colin's heart rate (on bipap) shot up to 190 for about two minutes, but his SATs stayed at 99-100%. His little arm does have those little petechiae all over but he's fine.

Hmm, that's about it. Casey came home and wanted to play Operation on the (hand over hand) on the computer. He says he wants to be a doctor when he grows up. Colin took a nappy and I took a nappy (by myself).

April 30:

What a beautiful day!  Spring is finally here in Vermont! 

May 23:

Well, I think spinach is a "no go" for the boys. I've given it to Casey a couple of times and every time he had to poop he'd cry for a bit before hand, during and after. Then he'd be fine. And, once when I was giving him some free water, I had the 60cc syringe on his extension and when I opened it, POP!! Casey NEVER has gas, unlike Colin who always does. Then, this morning, Colin just finished his first feeding of the day. I put him on bipap because he's been a little slow in the poop department and I thought it might help him poop. Gene and I went up in the attic and Nurse Sue was with the boys. She was getting Colin washed up (so he was off his bipap) and she yelled "Colin's throwing up!!" I ran down (leaving Gene stranded in the attic) and Sue was suctioning him, I popped opened his tube and got tons of air out--probably from the bipap and spinach. He was totally fine once he threw up, laughing at Toy Story 2. He did it one more time and seems fine now. Gene ended up giving him a Fleet Baby Lax as I think being a bit stopped up contributed to his throwing up. And YES, Colin does have a nissen fundiplication which is supposed to prevent reflux!!  (But, then again, the nissen shouldn't be too tight so that he would blow up in such circumstances!)

Our garage is coming along very well.  They poured the cement on May 12th, took the next day to let it set, and then while we were on our way to Massachusetts to go to the Reilly's they started construction.  Aunt Peggy and Grandma and Grandpa O'Neill came up and they had all four walls framed already!

Our entire trip to Massachusetts was wonderful!   We did get ourselves lost a bit, but not as bad as last year.  We left at about 11:00 AM on Friday which was only an hour past our hoped for departure time.   Gene always forgets how long a drive it is to the kennel and back.  And, of course, he is not crazy about leaving Sasha in the first place so he waits until the last second to bring her over.  On the way down we stopped at the VA and met Peggy.   She and one of her friends came out to visit with us while we had our adult Happy Meals from McDonald's.  Peggy insisted she needed the "step-o-meters" that came in our meals.  (She and a friend walk at lunch time). 

We arrived at the Reilly's around 5:30 or so.   So good to see Karen and Bill and Tim and Owen and Connor with his trach!   They've rearranged the family room so it's nice and roomy for Connor so we had plenty of room for all of us. 


June 1:

...Casey is driving,  for really, real-real!  He got his Power Chair to KEEP today!  I hadn't made a big deal about it with him since we've had lots of setbacks.  STILL, we don't have the "basket" for his vent to hang on but we put it on the battery compartment and just didn't have his suction on it.  He had a blast!  It's still going to take time, but I think he's going to fly with it!  We went outside and Tom (wheelchair guy) practiced with him.  Casey was very excited and thought pretty "big" about himself that he had control over his cruising!  For the record, he has a Permobil Entra with a Mini Flex seating system.  He has a "loaner" custom Whitmeyer headrest that I think will be the answer to all of our head/neck issues.   He is using a proximity switch that is mounted under his lap tray that he uses with his thumb...up for go and off for stop.  He has to watch a light display to see and wait for the direction that he wants to go in.  It's a bit cumbersome, but hey, he is driving a power chair with a SINGLE Switch!!  His chair also has the tilt/recline features and up/down feature but it's not hooked up to his scanning light device--it can be hooked up in the future.  The scanning device and the proximity switch are made by ASL.  They are made to work together.  We tried using the IST round switch that he was used to, but it didn't mesh right with this scanning device.  I wish they made this switch to use for toys and the computer!  It is really sturdy and easy to position, etc.  Our IST switch is in the shop AGAIN.  It's under warranty so hopefully we just had a "bum" one and the new one will be fine.   The chair also has a "kill" switch that we can hang onto when he's practicing, in case he gets in a precarious position!  And, it has an external control that we can access to help him with turns, etc.  Very Cool.  Tom is coming back tonight to teach Gene, Aunt Chris, the nurse and I everything about the chair, so I will add more later if anything extra cool comes up.  For $29,000 I would hope it will be an tool to make my big boy more independent and open his world even more!

June 5:

We went to the Essex Junction Balloon fest this afternoon!  It was weird leaving the house at 4:30!   I kept telling the boys that we were going to be leaving when it was almost bed time!  We wanted to see the balloon launching which is why we went later in the day.   We walked around a lot and checked out all the rides and exhibits and fun stuff.   We went in the petting zoo (not as fun as yours since the animals were in fences).   We got to walk/roll through a balloon on its side.  Very cool!  The boys were great!  The weather was perfect!  I did keep Colin on his bipap when we were in the fields with the balloons because it was soooo dusty, yuck.  We all enjoyed ourselves (Gene, myself, Nurse Nancy and Aunt Chris and the boys).  We got to eat yummy food that's bad for you.  I had fried dough with maple syrup and sugar.

We saw lots of people we know.  Lisa LeProvost was there but Taya and Brendan wouldn't come over to see us as they were too busy eating!  We saw Sheila, her mom and baby Sam.  Colin did his baby imitation for him.  Trina, mom to Angel-baby Kassidy, and Grandma Sue were there.   They were very excited to see the boys out and about. 

Colin is still awake--no nap today, and very happy.  Casey just had a shower and is giggling in his room.  A good day for us all around!


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