The O'Neill Family Journal!

June 28:

Casey is feeling better. We're cutting back on pain meds. He was up in his chair today for about an hour. Some crying but he got over it and played on the computer with Nurse Julie.

July 3:

We had a moose visit our pond this morning. We brought both boys out to see it. I don't think they were very impressed, but we all thought it was cool!!

July 5:

We had a good 4th of July. It was very hot here so we didn't do much. I didn't even dress the kids in red, white and blue and take our holiday photos. Just didn't have the spirit, I guess! We didn't go to our local parade as we were worried how Casey would tolerate his chair and how the boys would be out in the awful heat. There's always so much traffic, we were worried we'd get stuck and not get to leave if we needed to. We watched some baseball and Wiggles and played with some switch toys. Grandma and Grandpa came over and we had a cold-cut supper as it was too hot to cook! Of course, Aunt Chris was here, too. We did get out to the fireworks. I was nervous, but it worked out really well. We got a great handicapped spot and were able to sit right outside of the van and see perfectly. I was nervous about how Colin would react, but he was the most into it this year! Casey was the trepidacious one! Colin kept saying, "wow, wow, wow, oh, oh oh"! Casey was teary-eyed at first, but then perked up.

July 28, 2003:  Happy Birthday to me!

Hi everyone! Thank you for all the birthday wishes. It was a pretty terrific day. (Monica, a little part of you was with me all day long thinking about your family!). Both boys were in a good mood all day (evening doesn't count.) We got ourselves together and took off to the movies. Nurse Sue (usually here for Casey) was here for Colin, and Nurse Julie for Casey. We met Aunt Chris at the movie theater not too far away. It's a pretty new theater in the round. The front row of the second section has two seats missing smack in the middle for wheel chairs so Colin and Casey sat next to each other with us on either sides of them. I had Colin positioned with his feet facing the front and his head a bit to the side and he could see really well. We took off the bar of his Kid Kart so he could see great. Finding Nemo was really great! It certainly has some scary parts and some sad parts but it's really exciting! Casey and Colin were a little vocal but not any more than the other two kids in the theater. (Yes, only two moms and two kids besides us!) Colin was funny. He'd laugh and say "aaah" or "oooh" or "wow" at appropriate parts. He was totally engaged the whole time. We stopped at Burger King on the way home (I know, but it was MY birthday) and Colin fell asleep for about 1/2 hour on the way home. We just got settled on the floor watching Lion King when Casey's friend, Taylor and his mom, stopped by and asked if Casey could walk to the diner for creamies (soft serve for you southern people). So he and Julie went for a walk and chat. My mom and dad came over, and Aunt Chris and Grandma and Grandpa O'Neill and Daddy and Sasha...it was quite busy here! Opened a few gifts. We enjoyed Chicken Charlie's ribs and chicken and Grandma O's special lemon Jell-O with fresh peaches and pecans. The boys were in their chairs and mostly behaved well during dinner. Nurse Nancy H had to entertain Colin with books. Then we did some more gifts...I'll take some pictures of the treasures Casey made me! Time for cake. At this point Colin was a wreck. He was overtired and over stimulated. He'd be happy and silly at one point and then fussy and crying the next. Traditionally Casey helps me put out my birthday candles. I blow and he helps using a candle snuffer. We had yummy Ben & Jerry's ice-cream cake with Vanilla Heath Bar crunch and Cookie Dough ice-cream. The Grandmas and AC helped clean up while Gene and I got Colin settled in bed. He did a desat to the 80s while we were getting him up and in and settled. He quickly came up and settled down for stories and was out by 9:10. Casey had Nurse Nancy H and Nurse Terry for a while (long story) so he was quite happy and kept them entertained by being silly. I had given him a Captain Feathersword that laughs and talks which he loves as we celebrated his half birthday as well as mine. Aunt Chris even had "bootie bags" for the boys. I was asleep way before Casey! Gene gave me a beautiful ruby ring with diamond chips. He is a very tasteful jewelry shopper! He's lucky he gave me that, because his first gifts to me were a light for our hallway and some Swiffer refills!!!

August 11:

Hi everyone, I'm behind on emails. Kristin, I will try to catch-up on Cole's situation...Also, will comment on Jerika's bipap stuff...too much stuff got in the way of my computer time today! So, for a year now, I've wanted to do this. I am going to the Hampton Inn by MYSELF Thursday night over to Friday!!!!! I've never been away from both boys before. Until Casey had his surgery recently, I'd never been away from Colin. Two nights I stayed with Casey at the hospital and Gene stayed with Colin and they did fine. SO, I am going to go and bring my silky pjs, a good book, magazines, journal, credit card (for dining out and pay perview movies!), and some nice body lotion and "sleep" spray for my pillow and I am going to have a grand time! I got a great rate as one of our nurses ex-hubby works there and they have a Friends and Family program. Yay! They don't have room service, but I will get takeout from their sister restaurant next door. What do you think???

August 13:

I changed my night out to tonight. I'll be gone from about 3PM today until around noon tomorrow. I will miss checking my computer! I miss you guys, already!! Cole, Happy Birthday! Hannah, you look Marvelous! Devin, hope you had a great birthday. Where are the pics??

Thursday, August 14:

I had a wonderful time on my mini vacation! I highly recommend a night like this for anyone who is home a lot and has stress in their lives...

I checked in around 3:30 PM and sprayed my linen spray around to make it more homey. I unpacked and made everything neat. That took about 2 seconds. I stretched out and read for awhile. Then I decided to get some snacks so I walked to a convenience store. I got a chicken salad wrap, smart food cheese popcorn, pineapple-guava juice, double chocolate yoo-hoo, Skittles and biscotti. I know, I know, but I didn't eat ALL of it!

August 21:

Drum roll....MY COLLIE tipped the scales at 20, yes 20 pounds today!!!!! Just last week he was down 3 ounces, and now he's up 8. Who's to say what he'll do next week, but I am happy!!!

August 23:

Gene had his 4 wisdom teeth pulled yesterday.   I went with him as we had both Sue N and Nancy L here for the boys.  We got there about 11:15 and we were home by 1PM so that was good.  The doc said that Gene's extractions were probably his hardest ever AND he was the best patient ever!  Imagine that!  They kept him semi awake so the doc could ask him to move his head and change the position of his mouth.  He was feeling okay when we left.  We had brought Sasha to Grandma's and decided to keep her there.  I brought Gene home and got him settled upstairs with the AC on and gave him Advil.  Then I went for his scripts and some soft foods at the grocery store. 

September 1, 2003: 

This morning we all went fishing!  Grandpa Canosa has been wanting to bring Casey all summer.  They are going home to Florida on Wednesday so we were running out of time!  So, Gene, me, Grandpa Canosa, Casey, Colin, Nurse Sue and Nurse Julie all crammed into the van and went to the handicapped access on the Lamoille River in Milton.  It almost felt like fall instead of summer but we all enjoyed the crisp weather.   We certainly didn't have much luck fishing, but Casey and Gene finally caught a pumpkin seed.  Casey was thrilled!   I spent most of the time staying away from the worms.  Ugh.  I did cast with Dad's new rod and it brought back lots of memories.  We went up to Hackett's Orchard and got some cider donuts.  Yum.  Casey and Julie went out on the swing when we got home.  Colin napped for Nurse Sue.  I napped like a LOG.  Later on I blanched the rest of the green beans and the yellow beans.  I'm kind of out of it from my nap, still.  Colin is kind of fussy still.  Not liking getting fed.   He's been getting Miralax every day.  Casey said he'd go to bed at 7:30 because he is excited about school!

September 2:

Ugh.  What an awful night.  Gene was downstairs until about 2 or so but then I had to go down and get him because Colin was bawling.  He was soo restless and his stomach was all bloated but the gas wouldn't come out.  Poor buddy.  None of us slept, except for Casey!  We all finally came down around 6:45.  Casey was so funny.  He was pretending to sleep but his brow was all furrowed so we were teasing him.  Today was the first day that he went to school with Nancy H.  I think she was pretty nervous but we had everything all ready and set to go before 8 o'clock.  Colin was pretty quiet but needy.  He watched a lot of TV.  He felt much better after his AM poop.  I put some videos up on ebay.  Colin went up for a nap around noon and fell asleep pretty quickly.   After nap Colin and I had our together "poop" time on the computer.    Boy, we sure had some poop today!  I put him down on his mattress and found poop on my pants, carpet, and ALL THE WAY up Colin's back!  It was definitely a throw-out-the-shirt poop, take-a-bath poop.  After the bath, Gene came home and went to give Colin a syringe of food and the port opened and he got it all over!    Casey had a good day at school.  He wrote about fishing in his journal.   He got to play "octopus" and "fish" outside.  Nancy said he was a very good boy.  He was kind of spitty though.  Mom and Dad are here for their "last supper" with us.  Tomorrow they leave for Virginia to visit with Bob, Brenda and the kids. 

October 28th:

We had an uneventful trip to the pulmonologist today. We usually go in September, but somehow the time got away from me! Imagine that! Anyway, he was pleased with how good both boys look.

Casey: We talked about vent settings and possibly a larger trach size soon. He also suggested that when Casey is sick/more secretions, to put a peep on his vent to help so he doesn't get collapses (not that he ever does, but it might help when he's got more "stuff".) Dr Bach had originally ordered these settings way back in August of 2001. Our doc has a bit of a different philosophy but agrees that Casey has done SO well. He was amazed at how he cruised after his scoliosis surgery.

He's also going to write a letter to our school district saying that it's necessary for Casey to have an in/ex at school. Hopefully, it will do the trick.

He gave us orders for Albuterol and Duoneb again for the winter. We've never used nebs on a regular basis, just when ill and even then VERY seldom. We talked about some of the different nebs that the kids use and he didn't disagree with their use, he just thinks that the boys don't need them but if they do, he'd agree to them. He just doesn't think it's necessary since the boys are doing so well, to have medicine through their system with possible side-effects when they're doing well.

He thinks Casey should put a little more weight on. He's lost weight over the last couple of years, even with growth and his rods!! He totally agrees he shouldn't be overweight, but he is looking a little fragile lately and he's thinking he may be using more energy for breathing so he's using more of his calories that way.

Colin: He was quite happy with Colin's heart rate and sats and his daily regime. Last year Colin was quite the pill at the office and didn't look to great (he was still sort of recovering from nissen surgery and we hadn't gotten the bipap quite right yet). Dr Lahiri was worried about him and even mentioned the "t" word (trach).

He also said we could try Reglan with Colin. We're still not sure why Colin doesn't do well with his morning feeding. I think some of it is poop related (hence our daily Miralax) but he goes through periods with high heart rate and crying and sometimes if he's got a lot of bipap air, he's spit up. Maybe the Reglan will move things though his system better.

Both boys: I asked about the vest and he said, great idea! We will go into their respiratory department to get fitted. We'll get one "machine" thingy and two different vests/belts for the boys.

Asked about the oral albuterol. He said he'd study the info. He said they don't use it much anymore because it affects all the body systems and some kids, especially little ones, were greatly affected by it. But he said it would be interesting to read and think about.

November 7:

DR. DiMichele came on his way home today.   We've been noticing Casey has had some pain lately, especially when changing him and moving his legs.  We've now pinpointed it to his right hip.   I also called Pam (PT) beforehand so she could give me what the scoop has been on his hips.   Dr D thinks his hips (especially right one) are subluxing.  It happens a lot in neuro-muscular diseases, which I was aware of.  He said that the ball and socket joint kind of flattens out (something like that).  He recommended ibuprofen around the clock to inflammation and pain and then to get some x-rays.  Luckily, there is an ortho clinic on Thursday which Pam is doing so we can get the x-rays and bring them to the clinic and see Dr Aaronsen. 

Oh, Casey did not go to school today  (long story) and Terry said he was really restless and fussing during the night so I let him sleep in. Can you believe that he slept until 1:00 PM!!  Even then I had to wake him.

November 8:

Well, Colin may just be one of the kids that do better on Pediatric Vivonex.  I'm  not the best observer, so I'm not sure what he didn't tolerate in the Tolerex diet. It could be the safflower oil, could be the carrot juice, and could be the acetyl-l-carnitine. If I was less stressed right now I would have tried to pinpoint it--or make changes slower, but things are too crazy around here. Immediately, with his first overnight feeding of Vivonex cocktail, Colin returned to being his normal self. He did not need any extra bipap yesterday or the day before (but I gave him a bit), he is HAPPY and SMILEY and SILLY again. I will have to work on his regular cocktail to beef him up a bit, but for now I am HAPPY to keep him on the Vivonex!

Casey rested very well last night.  I really think the round the clock Ibuprofen is helping him. 

We packed the boys up today (no day nurse) and the four of us and Aunt Chris went to the Christmas Bazaar at Our Lady of Grace.  I think this one is my favorite.  It used to be the one in Underhill at St. Thomas, but it's not accessible so there goes that.  We had a dusting of snow on the ground.

November 14:

Welllll, Colin has his second head cold this season. Please keep him in your prayers! He's doing fine. We've been doing more bipap and more snuggles. His nose is really stuffy. I have to take the bipap mask of and suction him out for bubbles!! He's still in a fine mood, as long as someone is sitting with him!

Casey. Well, who knows! Casey went to the orthopedist Thursday. I wasn't there, (I was at the dentist!) but Julie and Gene went as well as our PT. The doc was pleased with Casey's post op back x-rays. He also did not see anything remarkable with Casey's hips. He said they are definitely dislocated but usually that does not cause pain. He didn't see any fractures or think there was a sprain. So, we keep up with the ibuprofen if we think he needs it. If he's still showing signs of pain, we'll go for an MRI. But, I do think that maybe it is emotional/stress.

This AM he was very agitated and crying. I asked him if he wanted me to go to school with him and he blinked, Yes. So we made plans and he was fine with it. I met him there and really enjoyed myself. Casey did fine. I really think he was nervous about a new class and new kids. The kids were great and the teacher was really great. She asked him a couple of yes, no questions today and at first he scrunched his face but then opened up and said yes appropriately. She eye-gazed if today was an odd or even day (with words) and at first he wouldn't open up and look, but then he did it and he was right! He and I and Sue, the nurse, went to the book fair in the library and picked out a bunch of books; sharks, dolphins and whales for him and some cute books for Colin. Then I left and he went and worked with the rented Dynavox and he did well. He enjoyed painting in art and silent reading (he blinks when he wants the pages turned). So, I'm hoping to go for a bit on Monday and/or Tuesday. Thank you all so much for your thoughts and your ideas. I really love knowing that I can come here and vent and get advice! I did think of keeping him home, but we will be gone for almost two weeks right after Thanksgiving, so I didn't want him to get too used to being home!

November 19:

Well, if it hasn't been a hard enough year for Casey already...his paraprofessional gave her notice effective Friday. I guess she's had a lot of personal stuff going on and she thought that when she and Casey switched classrooms it would be less stressful, but she still feels like she needs to stop working.

Now what is next??????????

On a good note, Abbey brought by Casey's Disney Wish kit.  He has a special Wish Kid hat with the Genie on it.  There is also a video about the different parts of Disney, a Birbaum's Disney guide, special stickers, and a photo frame.  Casey was happy!  Abbey also brought us all tee shirts from Make A Wish.  It's getting CLOSER!!!

BUT, I have a new trick......I've been meaning to tell everyone this, but didn't want to say it was working until I was certain so I wouldn't jinx us. Colin was having the HARDEST time with his morning feeding. His night feeding would end about 5 AM and then we'd get up a little before 8AM, cough and start the first day feeding. Well, he'd fuss and cry and get high heartrate and be miserable, 8 out of 10 times. Finally, I started giving him more at night, about 75 cc more, and slowing it down a bit so it ends more like 7 something AM. Then we get to go downstairs, cough, watch Sesame Street and get dressed/teeth, etc. And THEN about 9:30 he starts his 1st feeding. I feed him on the pump at 200cc an hour (instead of doing several small boluses) and he does GREAT!! He is also down to 3 larger feedings instead of 4 smaller ones. Anyway, it works for us!

Time for Family Journal 6