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Some days are just days, and that's okay!

Today was just a day for me.  Nothing too exciting or boring or too good or too bad.  I made grapenut pudding but put a little too much salt in, but it was still tasty!  Julia made us a tuna noodle casserole which turned out pretty well.  I got some things done today but not a whole lot.   So there's my day!

We did get Colin up for art in his kart.  He looked pretty good.  He painted two 'canvases' which was the first part of their mexican art project.  The TV didn't work, but Linda knew what the plan was so they did their thing.  Colin looked so cute using his slings and painting away!  He loved looking down at his hands and making the paint brushes fight each other (he was painting two fisted!). 

Casey, well, he probably had a bad day compared to me and Colin.  He just wasn't quite right.  He had to go out in the hall a time or two and just couldn't settle into his work even when they were doing something he usually likes.  Julie thinks he needs some extra long, good sleep this weekend. 

Gene ended his day by having to get a vole away from Moxie.  Thankfully, Colin and I were on our way out to bed so I didn't have to see it.  Gene quickly grabbed Casey and brought him in and then we closed the door to the yellow room so she had less space to run around in.  He actually said it was the easiest one to catch so far.  Poor Nugget was clueless just doing his thing running around and batting his candy (he steals the hard candy I leave by the door and loves to fling them and bat them and carry them and hide them). 

I get to sleep on the couch again tonight.  Gene took the last couple of nights since I wasn't feeling great.  I hope that next week we can transition to sleeping upstairs.  Brooke has only wakened me once to ask me something but I worry about something going wrong and her not getting us.  I especially worry about this colder weather coming and the condensation building up in the boys tubes and getting their lungs soaked.  I've shown her, of course, how to clear it and she does, but I still worry that it will build up quicker than she thinks.  One of my wishes is to have a built in intercome system.  We have baby monitors but we can't talk back on them--we had some intercoms but they didn't work so well and tended to interfere with the baby monitors.  Maybe we should invest in some new ones and maybe the technology has improved.  THEN I'd feel better about sleeping upstairs. 

What is SMA: My Blog Party Blog Entry!

SMA BLOG PARTY:  Click to see what it's all about.

My Entry:

I've got a 13-year-old boy who loves music, computer games, books and magazines.  He is funny and bright and sarcastic and likes to tease, go on adventures and sleep in on weekends.   I've got a 9-year-old boy who loves cartoons and monkeys and computer games.  He is very literal but eventually can see the joke *smile*.  He is a homebody who obsesses about Scooby Doo and scary movies.   Both of my boys have SMA (spinal muscular atrophy-type 1) but it doesn't define them, or us as a family.  Yes, SMA is a huge part of our lives but it doesn't consume us.  SMA is a devastating and often deadly disease but we have conciously decided not to let us rule everything we do.  Much of the time we have to make consessions to do things but we still do fun things and make the boys' lifves fun and enjoyable and productive.  AND, they have made us into better people (I find myself speaking here for Gene, too, which I don't usually do, but I think he would agree).   Until I had a child, I had no clue about, well,  about most anything that counts.  I was totally self-centered and selfish.  Having a child opened up the better part of me, for sure.  I can say this now, but certainly not 13 years ago when Casey was diagnosed, but in many ways, SMA has made me a better person, too.  At least I like myself better than I did before kids and before SMA.  I guess having Casey made me more aware of life and love and him having SMA made me aware of determination and desperation and so many more emotions that are sometimes hard to handle but make life bigger.  Does that make sense?

 



Casey on a zip line!




Me and Colin relaxing in the pool.



Brothers!

 

 

Guess who was in the ER last night?

No, not the boys and not me, but GENE!!  Around 6:30 or so he started having bad pains.  He wondered if it was a muscle pull.  He said it felt like someone kicked him in the nuts!  He laid on the floor for a while.   Took Advil.  Tried different positions, tried to sleep, etc.  Finally, close to morning time, he said he was driving himself to the ER!  (I couldn't leave because we wouldn't have been back in time for shift change (we would have had Nancy H here for Casey, but technically, Colin is mine from 7-8 AM.  He wondered about gall stones.  I didn't think it was in the right place but the pain seemed quite intense and reminiscent of my gall stones. 

Anyway, I called him around 7:30 or so.  Diagnosis, kidney stones!  I haven't heard the whole story yet (he went up to rest/sleep) but when they heard that it felt like he was kicked 'down there' they suspected kidney stones since that is a classic symptom.  The did X-Rays and a urine test.  I guess he had a lot of blood in his urine and they're guessing he passed one already.  Saw another on X-Ray.  So, he was send home with a script for pain and so far, that's all I've heard. 

And, Crap, Crap, Crap, when I was checking facebook this morning with the boys' computer, I got some weird static-like lines going across the screen.  And now, we get nothing.  Gene is going to look up how to do a test to see something-or-other.  August 13th ended our 2 year service contract with Dell.  Lovely.  This poor computer has had issues since day one out of the box.  I've gotten to know the two service tech guys very well.  I know their kids names and ages and their pets and all sorts of stuff--that's how many times they've been to the house.  I doubt Dell will do anything, but they are going to get a not so nice letter from me.  It's a bummer because last night Casey and I got back into playing Wizard 101 after taking a break over the summer.  Not sure if it will run on the this old laptop. 

Sad :(

So, we had a nice normal day today.  The boys got outside for a little bit.  They didn't go too far since Lauren was here with Casey today and she hasn't worked with him much.  I was all set to get them out and enjoy, but then, of course, I got nervous, but all was well.  Andrea knows a bit about Casey and his vent and they had phones...They ended up walking to the diner and then they came back and hung in the driveway.  We were all outside for a bit playing with the parachute toy and just horsing around. 

Oh, we got a Halloween costume catalog in the maiil.  Casey wants to be one of the guys from KISS.  But, just yesterday, he wanted to be a cow.  Go figure.

At the end of the day, Andrea is looking a little out of sorts and she hands me a card and tells Colin that it's her last day.  WHAT??????????   I mean, I knew it was coming, but no one had specified to us that today was the last day.  I felt awful that I hadn't done anything special for her--she's been with us for almost 3 years and has been so good to the boys and to Gene and myself.    I don't think Colin gets it at all. He finally said "Bye" to her just like it was any old day.

Later on as we were getting ready for bed, I asked Casey if he'd miss Andrea and he was blinking and uh huhing like crazy.  I asked Colin if he understood that Andrea wasn't going to be his nurse anymore and he was silent for a bit and then did his earnest and pitiful voice, "uh huh."  I told him that we could think about her whenever we wanted to and she'd always be in his heart.  He kind of liked that.   :)

Tags:

Pamindronate infusions; Session 2, day 2

8:30 PM and I think they are both asleep.  Whew, they need it! 

Once again I didn't sleep well as I was night nursey and tried to sleep inbetween flippings and ohter tendings and dealing with the cats tearing through the room and jumping on my head! 

Got up earlyish to try to get a jump on things.  Get a call from Andrea.  Tucker is not eating and is very lethargic.  So, she had to get him into the vet ASAP, so it was just me and Gene and the boys.  Getting four of us packed up, ready and out the door by 8:30 AM is quite a feat!  We almost made it--we were about 10 minutes off of our goal.  I wasn't as worried about getting there by 9:00 since the IVs were in place already and they looked good.

Oh, I also didn't sleep well because I had dreams of mistakenly flushing the boys IVs with their regular meds!  Ugh!  I woke up sweating with that dream more than once.  But, I did successfully flush their lines 2 times each. 

Both boys looked pretty good this morning; maybe a little puffy and a tiny bit spacey but mostly normal.

Up in the Infusion Bay we went.  We had Shannon again and a nurse that we had last year and they were both very helpful and efficient.  Colin's IV didn't want to draw back, even with a tournequet, so he did have to get a stick on his other arm to get the CBC and calcium and other tests they needed before starting Day 2 of infusions.  Casey's ended up working with the pressure from the tournequet. 

Once again it was easy to entertain Colin.  I picked out movies for him and I hit gold each time!  We kept him on bipap with his mask the whole time.  It made him feel more relaxed and I also think it helps keep out some of the germies that may be crawling around. 

Casey was a little ornery.  He went through a bunch of movies only watching a little bit of each.  He didn't want his music.  He finally settled into a movie with Gene for a while.  We got him out of his chair for a while. 

I think we finished by 1:30 or so.  Home by 2:00.

At this point, both boys are looking a little puffy and woozy.  Julia, Peggy and Steve were there when we arrived.  Peggy and Steve were getting ready for her graduation ceremony.  Julia was trying to help me catch up on laundry and stuff around the house. 

Settled the boys in the living room.  Casey just wanted COMPUTER, COMPUTER, COMPUTER.  Oh, Nurse Julie came from 3 -7:00 and saved our butts.  I went up and napped for a bit while Gene puttered and Julia did her thing.  RJ came all duded up and handsome and he, Peggy and Steve took off for Montpelier. 

Mom and Dad came by for a bit.,  AC came, too. 

Now the boys are looking feverish.  Casey has a temp of 101.3 axillary.  Colin is normal.  They both are definitely puffy.  Casey's eyes are pretty bloodshot looking.  This is a little worrysome since I don't remember that from last time. 

The boys played computer with Julie.  Then she gave Casey a shower while Julia and Colin played the promised game of Shrek. 

Casey looked a little better after his shower.  He was up in his chair for a bit and wanting to watch basketball. 

Settled the boys in bed and Casey was out very quickly.  Colin held out a little longer but is zonked out now.  Lawren comes tonight so I hope I get some sleep!  I'm sleeping in the bed in the Aunt Room.  Gene is undecided where he will sleep.  We never dug out the air mattress....

OH, BIG news!!!!!!!!   Casey Harmon, our old nurses son whom we've known since he was in 2nd grade, just got signed by the Cubs!!!  So exciting for him!  He's reporting for training in a week or so--putting off his 4th year at Clemson--but Cubs will pay for his last year when the time comes, and he got a sign on bonus!   How I wish Sue was alive to see Casey's dreams come to fuition!  I'm sure she *knows* but I wish she was here on this earth to literally share the excitement with him.


Both boys got some Tylenol. 

Pamindronate Infusions; session 2, day 1

Long, long day.  But it's done and it went pretty well.  Somehow, Andrea, Julie, myself and the boys made it out of the house and to the hospital and we made it just on time. 

Vitals, back to the infusion bay and got things started.  I tried my best to be there for each boys as they got their IV but I got kind of nauseus.  They were big, brave boys and they really did well.  The IV nurse was the same one that did Colin's last time, so I was nervous, but we mentioned that it infiltrated and he had issues, so she was extra careful and we watched it vigilantly.   Successful first picks for each boy.  Had to wait for labs.  Got saline running while we waited.  Labs came back.  Got the okay from Dr. Z.  Started the infusions. 

Child Life (I forget her name but she's been around for a couple of years) had a busy day with my #1 son.  He decided that he wanted a football movie.  Of course, she couldn't find one but then called a different department and learned they had some bloopers, so she requested them.   Then he wanted magazines.  So off she went looking for appropriate magazines.  By the time she got back, he had changed his mind and wanted music.  Now, I had his ipod, but he didn't want that, so she ordered a boom box.  Oh boy oh boy oh boy!  He did finally watch some of the bloopers and he wasn't too ornery, but he sure does like to be entertained! 

I went up to Dr. Hubbel's office and was able to get Casey's appointment changed from next Tuesday to today.  What a coup!  It ended up working out well. We were done with everything in the infusion bay and had time to check out the gift shop for a bit and then went up to Casey's appointment. 

Dr. Hubbel was in good form today :)    Basically, he sucked out some sludge/debris from Casey's ears.  AND, drumroll....Casey's right ear tube.  The tube was just hanging out in the crap in the canal.  He couldn't see Casey's other tube but he said "Let's see how it goes."  He did recommend coming in every 3 months for regular suck outs. 

I mentioned to Dr. Hubbel that Dr. DiMichele wanted Colin to get a hearing test and he said, "Bring him on in!"  He said we could bring them both in at the same time if that worked for us.

Oh, and Colin insisted he needed a balloon from the gift shop.  He picked Scooby Doo on a stick.  So, I gave Casey a chance to pick.  He took forever!  FINALLY, he picked a "Baby" balloon on a stick.  He thinks he's so funny!

Got home.  Got the boys settled into the living room.  Pretty much watched TV and vegged out.  Whew.

So, Colin has ring worm

I'm a little freaked out about it.  Gene noticed a spot on his head after he gave him a shower on Saturday.  Of course, being the picker I am, I picked at it and some skin and hair flaked off.  He's always had cradle-cap type stuff on his scalp, but this seemed different.   I thought fungus, at first, and all the antifungal creams we have said not to use on scalp or nails.  So I put 1% hydrocortesone on it. 

Several SMA families commented that their kids had similar stuff--and treated it with T-Gel shampoos and Selsun Blue, etc.  We use a dandruff shampoo with Colin, but he only gets a shower about once a week with sponge baths every day.  But we don't typically fully wash his hair except for the one time a week.  AND, his hair always still looks good after a week!  Now if we wait more than two days with Casey we'd have a grease pit on our hands! 

Anyway, I sent Dr. DiMichele this photo:



We had an appointment this afternoon and he declared it most likely ringworm.  He took a scraping but it takes 28 days for the culture to grow to be sure!  He said the best course of action will probably be oral (in his tube) antifungal medicine which he will have to take for 6-8 weeks!  And, any antifungal oral med can effect the liver.  Lovely.  The boys are supposed to get Pamindronate infusions next Tuesday and Wednesday and now I don't know if we can go ahead with them. 

He also checked Colin's ears and he said they were a little wet looking but not really infected per se.  He's recommending that we get his hearing checked since he's wondering if is being affected.  So, I guess we'll be making that appointment soon.

Other than that, it was a normalish day.  Nancy L decided to take only one week of vacation (she felt bad because of the holey schedule) so that was good for us. 

Terry's last night was Saturday.  Weird for her (and us) I'm sure. 

The boys slept pretty well last night.  There was one point in the night that EVERYone was up, including the cats and Gene and then it took Colin a while to settle back to sleep but they were good.  I feel good enough to get up and down from the mattress on the floor--just a tiny bit sore each I get up or down. 

We get them again tonight and Tuesday night and then we have three nights in a row covered.

Oh, Julie said that she'd do some night and help train the new people, so that's a really good thing!

 


Never going out again :(

Dad and I had a date to go shopping today.  I called home to check on everyone and Gene said that Colin got a little  chokey but was fine now.  I get home and I hear the whole story.  Not sure what his numbers were (note to self--ask Nana L)  but I guess she suctioned Colins mouth and transferred him to his kart and had pushed him into the other room when she noticed he was blue around the mouth.  His face was pale.  She called for Gene (thankfully he stayed home while I was out), put bipap on, grabbed the O2,   Nancy R (a different Nancy who was here for Casey) gave him mouth to mouth.  Put oxygen through bipap and vented his belly and he stabilized within a couple of minutes, though his heartrate stayed low for a while (THAT is what scares me!).  After a few more minutes his heartrate increased to the 90s and low 100s (which is still low for him).  When I got home he was still on bipap (no oxygen) and he was acting fine and his numbers were perfect but looked pale. 

Oh, not sure why they didn't use the cough assist right away.  It wasn't far at all and it's on wheels--note to self--ask Nancy.  That's usually what I grab first if he is having a dip. 

Colin hasn't had a desat like that for a LONG time--maybe even a couple of years.  He's done a few tiny little ones, but nothing so dramatic.  It always seems like he does something funny whenever I plan on going out or manage to actually get out.  He might have an unusually high heart-rate, or seem like he has to throw up or he might get a bit chokey but not desat.  Sigh.

Dad and I had a good time.  We hit Bed Bath and Beyond, Dick's (Dad got his fishing license), Staples, and Best Buy.  We went out with the intentions of trying to find a 'slide scanner' for my birthday.  Staples had none.  Best Buy had two, and only one was the kind that you can do without being attached to a PC (has a memory card).  We didn't buy it because I want to do a little more research on them. 

Afterwards we went to Long Horn for lunch.  It was good.  I got the special salad mom usually gets with grilled chicken, strawberries, mandarin oranges, grapes, feta with raspberry balsamic vinegar dressing. 

I've kept Colin on bipap since the incident.  We'll hit bed early tonight. 

Casey will not go to summer school tomorrow.  Nurse Julie is on vacation this week and Nurse Nancy R will be working but I'd rather not have them go out in the community...They were only going to the grocery store so I don't think he'll be heart broken.  He'll go on Wed and Thursday with Nancy H.

A new grad nurse started shadowing today-I hope we didn't scare her off with Colin's desat.  Eventually she will be doing a couple of nights but I like the new nurses to get to know the boys and what they are like when they're awake :)  She seems very nice.  Tomorrow I'll spend more time with her since I do NOT plan on going anywhere. 


Casey's Humanities Camp and Terry's Party

What a day!!
Everything turned out well.  Casey's Bubblrr at Humanities Camp was cool and Terry's party was a lot of fun.

Did a lot of cleaning up, organizing and readying for the party this morning.  Things looked pretty good.  Julia and I ran out to the 'Woo' store.  I hadn't been there since they moved to a bigger space.  She has lots of neat things there.  I picked up a worry stone for Terry.  I also found one of those Fortune Telling Fish.  Does anyone remember those?  They come in a little plastic sleeve.  They're red, plasticy/cellophane-like fish and you place them on the palm of your hand.  The fish will either curl its head, or tail or both or do nothing or flip over and each thing it does 'tells your fortune.  (I guess it's kind of like a mood ring).    Casey thought it was really cool.

Then I had time to brush my teeth and Gene and I headed over to the high school library to participate in the closing of Humanites Camp and view the movie that the Humanities Camp kids made.  Mr. Wyndorff did such a great job with all the kids. It was a great program.  I wish all the school year could be like this camp as I'm sure Casey would really flourish and learn a lot and show his creativity even more. 

A rep from the Humanitis Council attended.  She seemed very pleased and impressed with the kids and all they accomplished in a week.  I guess 10 communites were given the grant--Comcast gave $10,000 to the program!  She explained how the schools are given the sets of books and the theme and then they run with it.  Our kids got to go on a field trip to Burlington for a Ghost tour, toured UVM (to get them thinking about the future), made a movie, wrote a scary story, illustrated a poster representing how they saw the characters from on of the books, made some snacks, Skyped with a detective from CT about inqueries, and more! 

First, we saw a slide show of the week put to the Beatles "Magical Mystery Tour" which was fun to watch and see the kids in action!

Next we viewed Casey;s story on Bubblr.  It's called "Where is Nugget?"  It was very cute.  Mel showed me how they developed the story and picked the names, scenery, etc,  He really did a good job.  ...........I just tried to find it online but I couldn't.  I'll ask Mel how to access it so I can share. 

Then they showed the movie they made--soo awesome!  The kids did a great job and Mr. Wyndorf did an awesome job with the editing.

All the kids were presented with a Paper Plate Award.  Casey's was the Neil Armstrong award as he had a lot of 'firsts' this week like riding on the city bus and exploring the back alleys of Burlington!

And, The Vermont Humanities Council gave each of the kids a tee-shirt which they all liked.  Nice touch!

At home it was party mode!  Julie put Casey down for a bit to rest his 'biscuits' while we finished working on the veggie platter, started the chocolate fountain, etc.  Julia had sliced up the cheeses and pineapple.  Mom and AC came.  Nancy R came, and then the rest arrived right at 3 o'clock.

The weather was a little iffy--cloudy with some rain drops, so no one went outside.  It worked out okay with people in the living room, kitchen and yellow room.  I had everyone do my Arizona quiz.  Only Gail got 100 percent!  No one got the bonus question which was "which American Idol winner was born in Arizona".  Everyone got a prize, except Nancy R because she cheated by having Casey (with help) look up some of the answers! 

I also had everyone write a note to Terry on an Arizona shaped paper that said, "Farewell, Terry" and had a picture of a cactus on it.  I'm going to gather a couple more and then put them together for her with a ring--kind of like a book.

I think Terry enjoyed herself as did everyone else.  We had cold sodas, the chocolate fountain with:  marshmallows, graham crackers, fresh pineapple, bananas, Nutter Butter cookies, and the ever poplular strawberries,   I think my mom had about 10 chocolate dipped strawberries!  Two kinds of crackers with cheddar, swiss and smoked gouda.  Veggie platter with grape tomoatoes, broccoli, cauliflower, carrots, string beans, celery with Hidden Valley Ranch dip.  Way yummy.  Oh and Gail brought an assortment of cookies from Quality Bake Shop (my fav).  The coconut macaroons were delicous with the chocolate!

Terry enjoyed the Home Depot gift certificate from the VNA people and a bunch of other things.  She liked the happiness necklace and worry stone that I gave her and she loved the shirt that the boys decorated for her. 

Clean up was easy and Nancy R and Staci helped a lot. 

No need for dinner this night!  Full!! 

I was exhausted.  I let Nancy and Gene put the boys to bed and I went up early and watched some TV.  I remember Gene coming up and turning the TV off.  Usually I turn it off before I fall asleep but I must have zonked out!

Summer School

Summer school, summer school, summer school... Colin was supposed to start today.  I've been pretty anxious and stressed about stuff and I just couldn't see it working this year.  Between my gall bladder issues, Casey's summer school schedule, my parents coming, Terry (night nurse leaving soon), Casey's ears, Casey's teeth, Pamindronate infusions, etc., I just couldn't wrap my head around getting Colin to summer school at 8AM and spending 3 or so hours there and trying to adapt the curriculum, deal with the heat and teachers we don't know, etc. it seemed like too much.  So, I opted him out.  And, do I feel guilty??  Well, I do feel guilty a little bit,but I still know it's the right decision. 

So today we started a little summer school on our own.  Andrea got out the white board and we made a list of things to accomplish. 

1.  Bipap on
2. 

Ooops. tp be continued...

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