Just me and the Big K

 Nurse Staci has been on vacation.  Casey and I got to spend a lot of time together.  I thought he'd be sick of me before Staci came back but we've had a lot of fun.  We haven't gotten on each others nerves too much!  He's been pretty cooperative and his behavior has been, well, not quite exemplary, but pretty darn good. 

Some of the highlights:

One day he had Eerie Indiana in the AM, shower and trach change (he LOVES showers), Wizard 101 with me for 4+ hours, a quick walk on a beautiful day with Dad, book group, our audio book Spirit Hunters at bed time. It was a good day.

Also:  a couple of other walks with Dad, crafting with Mom, Poptropica with Nancy Hadd, haircut and library with Mom and Julie, The Masked Singer (we only watch when Gene sits with us), our spooky Halloween lights, Halloween books in book group, some kisses from Molly Sue (dog :) ), time with Aunt Chris... I'm sure there's more! 

 

SMA Awareness Day #17

 

Don't look at me.  Look at the shirt, lol.  I was night nurse last night and I'm feeling it.  We've had good night coverage lately so I was a little out of practice being night nurse. Casey was actually a pretty good sleeper. He flipped every couple of hours, which is normal.  Pulse ox only beeped once when the probe was coming off his toe.  NUGGET (orange cat) was the biggest interrupter of my sleep.  He came in a bunch of times, harumphing, and wanting me to feed him.  I got up and fed him twice!  He never wakes us when we're upstairs.  

Casey was very excited to finally get his hair cut.  "Dawn 23 Bartlett Road, Monday, hair" is what he was saying all weekend.  

This is the majority of what she cut off of him  

He still has longish hair and he still has some curls.  It looks a lot better. So far he's happy that it got lopped off. 

Feeling hot and blah

Kind of a draggy kind of day.  Very hot and humid.  One more day tomorrow and then it will break.

We stuck to our plans, though.  Woke Casey early and did his treatment and got him up and ready for the day.  Green Mountain Power knocked on the door at 8AM to let us know they were going to trim some trees and needed the power off for 2 hours. The man had remembered that we had medical needs...Anyway, it was a perfect timing because we had planned to be out of here at 9.

Gene drove us to school and stayed in the van with Casey while Nurse Julie and I brought in Casey's medical supplies to his room.

Then Gene went home and we headed to Garry's Barber Shop.  We had to wait for quite a few others ahead of us.  Robyn did a good job on Casey and gave him a little flip in the front.  He was cooperative.

Got some goodies at Quality Bake Shop.  Walked over to Dollar Tree.  Casey was mostly cooperative.  He remembered that we were going to pick out some post it notes for Paula.  He also picked out a cheery card to send/give to Grandpa. Then he obsessed about Halloween costumes.  No clue why as he hasn't dressed up in years.

Visited with Gramma O'Neill for a few minutes and delivered her cookies.  She came out to the ramp with her walker to wave at Casey.

Home again, jiggety jig.

Connected with Casey's SLP/Case Manager via FaceTime/and then phone when FaceTime didn't connect well.  Talked about some scheduling and things to focus on.

Shower time.  Must feel so good to have a shower after a hair cut.  No matter how careful the stylist and we are, he always ends up with hair everywhere.

I managed a quick nap and to listen to a podcast.  I still feel bleck.  I'm sure part of it is that I only had one cup of coffee this morning as I forgot to grab my iced coffee I had all ready to go in my travel mug.  Everyone else was a little blah and crabby so I didn't feel too out of place, haha.

Tomorrow morning will be easier not having to do shower.  7:15 pick up, oh my.  We'll probably have to start him at 5:40 or so.

Watching Red Sox now.  Occasionally he'll come up with something he wants to add to meeting agenda, or a person he's looking forward to seeing tomorrow.  And he's obsessing about wondering who his bus driver will be!

SMA Awareness Day 19: Hair cuts and Christmas Tree Shop equals tired Mama

School is coming up VERY quickly.  The boys needed to have their hair freshened up, well, in Colin's case, hacked for the beginning of the school year.

Look at all that hair!!

Gene was already up and out when I got out of bed this morning at 7:30 which is super late for me getting up and super-duper early for Gene even opening up his eyes, lol.  Checked in with Nurse Julie and Nurse Nancy (who is back from vacation) and we decided to go for the outing to get hair cuts.  Julie called the hair place and left a message to call us back so we could try to get 2 appointments at the same time. 

We all hustled to get the boys up and ready.  And, I had to get myself ready and take care of the dog and cats who were all very demanding.  They didn't like that Gene had gone out so early and they knew that we were getting ready for an adventure.

We got appointments for 11:00 the hair place in the blue mall--I forget what the name is.  We cruised down there and made it early.  Nancy took her car since she only works half a day for Collie on Tuesdays.

It's kind of stressful to get the boys hair done.  Casey was in his power chair so Julie took off his head rest and held his head.  Casey has zero head control and cannot hold or move his head.  Colin is in his chair that lays down so we have to lift up and hold his head and flip it from side to side as needed.  And, we have to contend with secretions--Colin is super spitty when he's not on his humidifier so we had to stop and suction.  Gotta give the hair dresser credit because she didn't flinch when she had to skirt around his spit puddles :)  I usually run back and forth between the two boys, taking over for holding heads and suctioning and repositioning.  Heads are heavy!!!  And, hair ends up everywhere.  All over their faces, and in their ears and shirts and chairs, and in their bags that hang on their chairs, in Julie's purse, ha ha, etc.  We used a hair dryer to try to loosen up the hair but didn't make a lot of progress.

I'm sure they weren't very comfortable with all the hair on them but they wanted to go to a store.  We had thought of Trader Joe's and Pier One but it seemed like a pain to get them back in the van and strapped down just to drive two minutes down the road (but too far and awkward to walk) so we decided to his Dunkin Donuts and then go to Christmas Tree Shop.   So that's what we did.  Nancy decided she needed to do some shopping so she met us at Christmas Tree.  She brought Colin around the store so that I could browse childless, which is very nice.

Colin picked out a Halloween light up skull because he was very excited to see all the Halloween decorations in the store.  Casey found a book.  They also found a Road Runner/Wile E Coyote DVD.  I got a bunch of odds and ends like a fall table cloth, fall flag, some K-cups, oh, and some other stuff. Both boys said that they had fun in the store, so that's a good thing.

Headed home.  Let Jaxon out of his crate and gave him some Frisbee time.  He's such a good boy in his crate while we're gone (at least we think he is!).

Colin watched some cartoons while Julie gave Casey a shower.  Then it was Colin's turn for me to give him one.  Gene came home while we were showering and helped me finish up Collie.  The boys got in some lounge wear and looked handsome and fresh.

Aunt Chris came and wii'd with the boys.  Casey Google mapped.  He was excited because he had to use Colin's DynaVox and it has a better processor so that he gets into some version of Google that he's able to get into the ocean!  They were playing an ocean wii game so I put in the Pacific Ocean for him.

We had some fresh pineapple that Gene had cut up for me so I made a serving of caramelized pineapple, from a recipe that I had, and put it over some Vanilla Bean ice-cream that I had.  Delicious!!

Bedtime.  Here are the boys with their new cuts.

Hair cuts, the mall, dead battery and whew, tired!

Today was the only day that we had two nurses for the whole vacation, so we planned to take advantage of that and get out of the house.  Gene could stay home and work in peace (although that wasn't totally the case because he had to deal with Jaxon and Jaxon hates it when me and the boys are away from the house--he tends to be very clingy and a pain in the butt).

Made appointments for the boys at the JC Penney salon in the University Mall for 11:00.  We had never been there before but thought we'd give it a try instead of the place in the blue mall--hey it saved us getting the boys in and out of the van another time. 

Julie and Casey did their thing while Karyna, Colin and I took off for Kohl's.  I returned some things and then we hunted the racks for some good sale items.  Found a couple of long sleeved shirts for Colin and some comfy lined wind pants.  I TRIED to look for some thing for myself but Colin was not very cooperative and I couldn't concentrate so I ended up with one pair of jeans for myself.

Of course Colin was perfectly happy in Game Stop while we looked for a wii u game for him.  Casey and Julie met us there.  Colin picked Duck Tales remastered one that sounds pretty fun and adventurous.  I also picked up a new Skylanders Swap Force character.  Casey asked me to buy a Madden football game to play with Dad but I had to say no because Daddy is not a wii player nor does he have the time, and the sports ones seem like they are so complicated that I don't think Julie nor I could figure it out.   I hate saying no, but I guess it's good for him to hear sometimes. 

Headed over to Pennys.  I had mentioned before hand that both the boys had special needs and were in wheelchairs but I still think they were a little freaked by the extent of our special needs but everyone ended up handling it well.  There was actually a lot of  room for us which is a good thing with 4 people including one large power chair and one large laying down wheel chair.  Turns out the young girl doing Casey had just graduated and was brand new at the salon.  I asked Julie about it because when I went over a couple of times to check on them I could see her hands shaking :)  Julie is a pro at holding his head for hair cuts so I spent most of the time helping Karyna and Colin.  I put his chair up quite a bit so it didn't break the person's back.  But then the handle is in the way so it takes quite a bit of moving and holding and flipping to get everything right.  Colin kind of actually enjoys getting his hair cut so he didn't mind all the fuss and flip-flopping.  Our woman was very talkative and took it all in stride.  Tomorrow we will have to dedicate part of the day cleaning chairs and wiping them down and getting mall germs and hair off. 

Oh, also, tomorrow someone is coming to look at our front door area.  We applied for a grant last year to have a ramp built.  We've never had a proper ramp out our front door.  We have a little cement pad outside the door and then a piece of plywood from the cement pad to the driveway.  Not very safe, or attractive but it's worked for years.  It's a very small angle so it doesn't have a lot of play in the plywood, if that makes sense.  So, we'll see what they say.  We'd LOVE to make the whole door way wider.  Casey's chair fits through, but it's just a standard 36" door so it takes some careful maneuvering. 

After hair cuts we cruised around looking for bargains in the boys department.  Casey is in the half boys/half men department.  It was hard to find jeans for him.  I've been trying to find him black jeans.  He's an 18 or maybe a 28/28 but those sizes are so hard to find.  He insisted he needed some jeans so I found a blue pair for him and he was happy.  Found both boys some long sleeved shirts and a tee shirt or two.  I think I got 7 things for $22.00, thanks to the sales and Karyna's coupon for $10 off $25 or more.  Good deals.  Wish we had time for more perusing but we were TIRED and Julie, Karyna and I were hungry, hungry. 

Headed out to the van.  VAN WAS DEAD.  Ugh.  We knew there was a need for a new battery but Gene didn't get a chance to get one yet and it had started up fine this morning.  I think I might have helped killed it because I only had it on auxiliary when I activated the lift.  It worked for the loading up but when Julie went to start it--nothing but clicks.  She's good at this stuff so she immediately got out and talked to security.  (I was stuck in the way back).  They came and did their thing.  While they were doing that Karyna took advantage of the time and ran in and got some McDonald's for us.  I had sworn off fast food but was starving and that's what was available, so I said get me a cheese burger and a diet Coke.  She came back with a Double Quarter Pounder with Cheese meal.  I've never seen such a large fry before!  I ate some fries and had a couple of bites of the burger and it was gross.  I don't think I'll be missing fast food burgers after this.  Of course, Gene finished the burger for me :) 

Unloaded everyone.  Casey headed into the shower.  I don't know how Julie had the energy to do it but she did it.  After Colin was settled I headed up to take a rest as I was starting with a migrainey type headache.  600 mg of Ibuprofen and a quick nap with snuggly Nuggie and I was feeling better.

Poor Colin was yearning for wii but we didn't get to because I had the whole house to straighen up and formula to make, etc. 

No pictures today, sorry!

Endo and hair cuts

Another appointment today.  Today was meeting with the endocrinologist, Dr. Zimacas.  It's been about 3 years since we've seen him and about 2 years or so since the boys had their last Pamindronate infusion for bone density.  We didn't have the worst experiences with the Pamidronate, but it certainly wasn't smooth sailing.  So I kind of dropped the ball on them.  One of the main reasons I stopped was that when the boys had their bone scans to check their density, the results came back as unreadable.  I can't really understand that because so many other SMA kids get scans done and their results are readable.  Dr. Z said because of their contractures and Casey's rods, that it's next to impossible to get good results, period.  And, that there is a wide margin for error each time so it's very hard to see true improvements.  Anyway, I'm not sure if I agree with that part.  I would like to try to get baselines on the boys some time but I won't push for it at this time.

Dr. Z spent a lot of time talking about the thoughts on how Pamindronate works in increasing bone density scores in certain populations of people...I won't bore you with that here.  He also acknowledged my concerns about if this will help long term and if the density increases we may see are truly increases in density that will help prevent fractures in the future.

He also made sure to let me know that this is not a 'standard practice' and it's totally up to us as to whether we want to proceed or not.  So if we decide NOT to do it, he would be fine with it.  He said if we had opted not to do Vitamin D--he would convince us and show us the proven data on Vitamin D and bone health.  But since this isn't proven, he understands that we are the ones to make the choice to proceed or not.

If we do go ahead, he really wants us to make the commitment to do it every 3 or 4 months or so, two days in a row (about half a day each).  It would include them getting IVs each time.  That is one of my biggest fears.  They are hard sticks and it's such a stressful thing for them and for us.  Sigh.  The first time we had them done Colin's IV infiltrated over night.  Ugh.  The second time we saved the IV overnight but then it wouldn't draw so it had to be redone.  They also had some flu-like side effects but I understand that each time they are administered the side effects become less.

So, at this moment I am leaning towards doing them.  I will talk with Gene some more and then decide.  If we do go ahead, I'd like to get two doses in--maybe June and October and then stay away from the hospital until spring.

He examined the boys and found them to be progressing puberty-wise.  Colin a little slower than Casey :)

Afterwards we decided to play hookey from school.  I had been planning on dropping Casey off at school and having Priscilla come for Colin but we decided to get haircuts instead.  We called Gene and he said he'd meet us at Garry's Barber Shop to help.

The boys had the same hair cutters as they had last time so they were pretty efficient and did a good job.  Gene's friend, Lori, started goading Gene to get his hair cut (it's been a LONG time) and Casey chimed in, so he folded and let her cut his hair and trim his beard. 

Yes, you are seeing a miracle...Gene is getting his hair cut (and his beard/mustache cut and trimmed)!