it's all in the jeans

   I remember going on vacation with my side of the family the summer when  Emma was about 18 months.  It was a nice family owned hotel where we got free breakfast - full sit down, take your order breakfast.  We all met - one of my brothers and sister and their spouses and my folks- for breakfast and while I was feeding Emma, my (newly married) brother in law and I were discussing feeding babies.  He said, "There are so many rules!  How do you learn all the rules?"
    I think I replied that you just learn as you go.
   Most of the time, life is like that.  You learn as you go.  You figure it out.  And, hopefully, you get some really good advice as you roll along (hehe - pun intended!)  Sometimes you learn the "rules" before you break them.  Sometimes you do research and learn and sometimes, you make up rules as you go.
   And what does this have to do with jeans?  It is one of those "rules".  Things you learn that would be good to know - such as frozen waffles make good teethers.  Good tips. 
   A good tip in the world of chairs is to check out pants designed for chair users.
   I have been (slowly) taking the buttons off the back of Jarrad's pants.  You wouldn't think that something so small could cause irritation or pressure sores but that is a possibility and even though he is good with his pressure relief, you can't be too careful.  Pressure sores are HORRIBLE!!  When we were learning about them in the hospital, one of the therapists said that we might have to get special pants to help avoid them.
    WHHHAAATTTT????

    Seriously?   You are talking about clothes?  On top of the medical and accessibility expenses?  And let me tell you that the way she described said pants was NOT pretty - all funky padding and cutouts -not cool.  And it really wasn't what we could handle at the time.  We needed to get him out of the hospital and home first.
   When  we did get settled and Jarrad started back to work, we started to think about things like pockets that he couldn't use because of where they were on the pants and other details such as his back side.  As in not showing it.  Easy to fix if wearing sweats; not so easy to fix while wearing dress pants or regular jeans.  Me, having remembered the therapist's words googled "wheelchair jeans".
    What I found was a lot pants for folks who use a chair because walking is very hard - ie for geriatric patients.  Like the photo to the left.  And this standing model was under the "wheelchair section".
   We did find - after much searching - a couple of sites for pants and jeans that were designed for paras and quads.  One site in particular had jeans designed by someone who uses his products.  AND they were modern.  They look nice and have usable hip pockets and calf pockets. They were ordered and Jarrad (and I) love them! 
    Ok.  Why get special jeans and why these in particular?
    1.  Modesty.  No one wants his or her butt to hang out or unmentionables to show.
    2.  Skin Integrity.  No seams, no buttons - smooth fabric to help prevent sores
    3.  Pockets.  The ability to use pockets without things falling out.  By the way - regular carpenter jeans don't work.
    4.  Me.  Selfish, I know BUT I am able to get a better grip on these so that I can help Jarrad more as he transfers into the van (I feel safer). And he looks so cute!

 5.  And these are just plain nice.  No, really, google "wheelchair jeans" or pants and see.  (It's a bit scary!)
6.  Endless Ability has great customer service.
    So your new "rule" is: You aren't going to go out and buy a new wardrobe right away but just like you added pieces here and there before, you are going to do it in the future.  Might as well get something that fits your body the right way.  

(PS -They are coming out with khakis soon.  I am so excited!)

(PPS - not compensated for this review)

and the hospital bag

   I would say that I have become something of an expert on the hospitals in our area.  There are a lot and we haven't visited all of them but we have been to the major ones.
   And I think I can say that no matter how nice a hospital and/or it's personal is, going to a hospital SUCKS!!!
    I hate going.  I really hate ER's.  I hate waiting.  I hate the cubicles and the small beds.  I hate all the reasons why you go.
   Yesterday, we went to the ER.  Long story as short as I can, Jarrad experienced an episode of autonomic dysreflexia.  Usually, when he starts to feel the symptoms, he heads it off by taking care of what we think is causing it - ie shifting or cathing.  But yesterday, that didn't seem to work.  He looked so bad that his co-workers called for an ambulance.  And at 8:30 am, he was delivered to the ER where he didn't leave until 6:30 pm.
    Oh, he is ok.  It resolved itself.  Still not sure what it was but it got taken care of.  Still, they wanted to do tests and tests and more tests.
    So I packed the kids up and off we went to see Daddy.
    Now,  if for some reason, you think that you will be going to the hospital on occasion, I recommend a grab bag for the hospital.  It is a bag that you grab that has stuff that you might need.  Especially if you might need to occupy 2 children. 
    So what goes in a grab bag?  Anything you might need but is still easy to carry as you walk out of the parking garage while holding the hands of 2 kids and trek through a hospital.   A zipper is good to have on said bag in case you need to throw it to the ground to grab a curious child who - while you are trying to get your bearings - steps back on the elevator just as the doors start to close- not that that ever happened to me, of course. 
 

1.  Always pack snacks-I cannot stress that enough.  Snacks are a GREAT distraction.  I pack the healthy snacks separate from the candy just so I can pull out the healthy ones first and the kids don't see the candy.  Raisins, PB crackers, and granola bars are good staples.  Make sure you pack adult snacks too, because well, it is hospital food.  Pack your own water, just in case. I used to have quarters in there (good tip from a friend) but I took them out for school milk - opps!  Anyway, quarters serve a dual purpose of snack and a rousing game of "Let's go find the vending machine" followed by "You get to push buttons".  Some hospitals are very kind and will give the kid's snacks- take them!  The novelty is fun! 

 

Activities - I have a couple of Dollar Store puzzles, notepaper, markers, coloring books and magazines that we have already read in the bag.  I also make sure my IPOD and Kindle are always charged.  They can be thrown in quickly.  I am a Amazon Prime member so with hospital WIFI, I know that the kids always have something to acceptable to watch.  When we were going to dr. visits and hospitals on a regular basis, I packed a charger too.  Took it out for some reason but it used to be in there.

Kids' meal toys and small dollar toys are great to take along.  You can also put a deck of Go Fish, Old Maid or regular playing cards in the bag.  My kids will play and color with the Kindle playing in the background.  Card games are great if you know what you are there for aka visiting Daddy because he broke his leg.  ER visits, well, don't play the card games- you won't be able to focus.

Hygiene - Sick people go to hospitals!  So take hand wipes for messy kids and cough drops and tissues (hospital tissues are like sandpaper).  Other tips?  Ask for a blanket to put on the floor.  It makes a nice place for the kids to sit and defines where they are allowed to go.  Get 2 if you can, just in case you need to separate kids (This is HIS blanket and you are not allowed on it.  No, your toe CANNOT be on your sister's blanket!)  If you are going a lot, have each child carry a backpack with stuff so it can free your hands up and they can take ownership of their own toys. I had almost decided to do away with a grab bag but hadn't quite gotten there.  I had slowly been taking things out but I hadn't emptied it completely.  It is one less thing to think about if I need to run out the door. 

   

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

   

Marriage

    This week, Jarrad and I celebrated 9 years of marriage.  Funny, it seems like it is a lot longer.  
   I remember when we were first married.  It seemed odd to coordinate our schedules to do stuff.  All of a sudden I had to "check" with someone all over again because they would worry about me if I didn't.  It took some adjusting.  And then we had Emma.  It was as if we were adjusting all over again.  And then we had Sam - more adjusting.  And just when we were hitting our stride and really starting to plan and whatever, we had to adjust all over again.
   In all of the adjusting, it is sometimes hard to remember that I am a wife - not the what my jobs are wife part (by the way, we and not societal norms defined what my role as wife was) - but the other part.  The part where I was no longer by myself.  Where I didn't have to rely only on myself but had a partner to help make it easier.  And the part that said I could have feelings and be pretty and desirable.  It was hard when we had  the kids and it is really hard now.
   If you are reading this; if by some means you found this and are in a similar situation, you will know what I mean.
    I remember going to my first support group meeting and listening to a "veteran" wife talk and she said (something like) "Get out of the 'caretaker' role as fast as you can because you need to be a wife again."  It is one of those things that I sort of got at the time but now I really get it.
  Sometimes, the connection just isn't there. You are too busy or too tired.  It is too much work to be affectionate.  You just want your space.  I find that is when I need Jarrad the most.  Unfortunately, he is in the "too" stage as well.  I so want to throw in the towel and say I am done instead of finding it in me to go and kiss him when I really don't want to put in the effort.
     We made the decision to not throw in the towel last September.
     Umm, what?  Wait, I thought you just celebrated 9 years . . .
    Yep.   And last October,  I went into the bedroom, closed the door and told him that if he didn't get it together, I would leave.
    I am not proud of it.  But we had hit a point where it was beyond too much.  I couldn't do it all and I told him that.  I told him that I loved him and I was tired.  That one of us needed to have it together because of the kids and there was no way I could keep doing it all.  The only way we were going to be able to get help for him (and me) was if I left.
    Or he could start helping himself.
    If you know Jarrad's history, you would know that was not something that I did lightly; nor did he take it lightly.  My parents always said you don't talk about divorce unless it is going to happen.  He knew I was serious and I knew he would never let it get to that point.  Jarrad loves me.
    And so he pulled it together.  He refused to quit.  So when I want to say I am "too", we both try a bit harder. 
   It is not easy but we looked at our marriage now - as it is with the "3rd person" in it - and decided that we were committed to our marriage.  

Want to be "that mom" so I made towel ponchos

     Pinterest is awesome - awesome at collecting ideas and awesome at making you feel inadequate!  I love it.  I do.  I want to be "that Mom"  that creates awesome meals and activities for her kids.  I kind of hate these moms and yet, I am about to do what they do.  Post my own "creation".  Why?  Because I am proud of myself.  And as a stay at home mom, sometimes you go a little nuts.
    My mom was a stay at homer.  I asked her once how she did it.  She told me she sewed and crafted. Now, I do it.  Others in my acquaintance do it.  They sew, can, garden and create awesome meals and activities.  And then share it because we understand the why we do it and can truly appreciate the creation.
   Last  week, the kids went with my folks to the beach.  Mom asked if I would provide the beach towels so she wouldn't have to pack them.  Which got me to thinking about lugging things to the beach and kids who have to hold a towel because they are  freezing and can't grab a pail.  Which made me think of a friend who has these terry cloth ponchos that she uses for her kids.
    One similar to this one I found on Amazon for 14.50 - great  but also not very big as it is designed for a toddler.  SO I looked on pinterest - gathered some info and made my own - 2 - for about the same price.

I bought 2 towels (4 total but 2 for one poncho) for this project.  I cut them in half - making Emma's more than half so it would be longer.  I wanted this to "grow" with the kids.  Anyway, I cut it in half(ish) to make the 2 pieces of the body.  Then hemmed the rough edges. 

For the hood, I cut up the excess piece to about the same size as a hand towel.  It probably would have been prettier with a hand towel and it's finished edges.  As it was, I sewed the fringie edges up on the hood piece.

I attached the hood piece to one of the body pieces. 

Sew the 2 body pieces together but leave the hood area open.

Turn the hood inside out and sew. 

Sew the corner  - I don't know what you call it but I am sure that there is a technical name for it - so you have less of a pointy head!  All in all, it took about an hour to make each on

Take pictures of your models - who love them!  Field test says that they worked really well.   I saw a tutorial that had a pocket on the front.  Maybe I will go back and add one later but . . .For now, it works.  And I feel - for a moment - that I am that mom. 

5 minute week review (ok, maybe a little bit more than 5 because just this title alone. . . )

      I have been wanting to write for the past 4 days but have been WAY too lazy!  So here it is - a way to write about all the topics that are floating in my head.  Maybe I will expand later?
Wait . .  .
Who am I kidding?
   Anyway,
     Monday - surgery.  Side note: Jarrad is doing better - the hand is getting stronger but he still feels the strain after a full day. I am not sure how I got him in the van after surgery because we traded cars with my folks so that he could do a linear slide instead of pulling up into the van.  He does say that the carpal tunnel feels so much better! 
     Tuesday - mom and I went to a scrapbook store and had lunch out - fun!  It was nice to talk to her.  My mom is my friend.  I like that.  I hope I can be my children's friends when they are adults.  And not living in my house.  Emma had her last (full) day of school.  Sniff.  On to first grade.
    Wednesday - Got up and went to the Kindergarten awards ceremony.  So proud of her this year.  Her teacher says that she was a role model and knew how to behave even when the other children were misbehaving.  It was over by 9 and we packed the kids and mom and dad into the van and sent them to the beach.  Jarrad and I took a nap in the middle of the day!!!  I got up, did some errands and brought home take out - no cooking for the next 2 days!  Got a call from the folks at 9:30 to say good night to the kids.
    Thursday - Slept in till 8 - CRAZY!  Commented on how quiet the house was and how much we missed the stinkers.  Had a leisurely morning reading and doing NO chores.  I had intended to do "stuff".  Didn't.  Took Jarrad to the spinal cord dr.  to review the scans that they did 2 weeks ago.  Got the under (?) dr. that we don't like - she hadn't even looked at the scans - what??? Anyway.  Took too long so we didn't have time to go see the movie that we wanted to - we were meeting friends for dinner.  So we went to Earthfare and had coffee and read.  I like reading.  Had dinner with friends and came home.  Jarrad was wiped so he fell asleep at 8:30.  I folded laundry.  Got a call from the kids at 9:00 this time.
    Friday- Jarrad went to work.  I had breakfast with my BFF and then spent the next 2 hours trying to put some semblance of order to my house before the everyone came back at 3.
    I really missed the kids.  I know that they had a good time and it was nice to be able to read for 2 hours at a time while they were gone but I missed them. . .  I missed them.

 

Carpel Tunnel Surgery

    Today, Jarrad and I woke up at 4:30 so that he could take a shower with a special antibacterial soap that he was given by the surgical center.  It is supposed to cut down on infection.
   Ok.
   49%  of paraplegics suffer from carpal tunnel syndrome.  Most of the time, it is because of repeated motion stress that comes with pushing the chair as well as transfers.  There are certain things that can be done to help - padded gloves, wrist braces at night, tendon gliding exercises, cortisone shots, canting your wheels for easier pushes and Natural-Fit handrims, again for easier pushes (which equals less stress), heat and ice treatment to reduce swelling . . . 
   BUT
   You can still have carpal tunnel symptoms.
   Jarrad always thought he might have to have the surgery as both of his parents did but being paralyzed certainly sped up the time table he was anticipating.  We were in acute rehab when he started having tingling and numbness in his hands.  First, it was wrist braces and tendon gliding exercises.  He wore the braces every night and preformed the exercises religiously.  Then he got the cortisone shots and that was wonderful.  Those original shots lasted about 8 months.  He had his wheels canted and the Natural-Fit handrims on his chair.
    When the shots started to wear off, we looked at our options.  We had hoped that the exercises would have helped and we think it did because when we went to the doctor for another shot, he was surprised that the first ones lasted as long as they did.  According to him, they usually last at most 6 months and that is on non paras.  So I think that all the other things that we did helped to prolong the effects of that initial shot.
    So we went to the doctor to get a 2nd shot.  By the way, the second shot didn't last as long - about 5 months this time.  We were kind of nervous but the doctor we went to see was amazing!  He really took time to listen to us and answer questions.  Sometimes, doctors are brusque; this one had a fabulous bedside manner.  We even saw examples of his work on one of the nurses.  Such a tiny little scar.
    Because of our situation (aka paraplegia), he recommended one of his colleagues who does endoscopic surgery.  This would move the incision site to above the wrist and be much smaller and have less scaring.  We opted for that procedure.
     Now we are in the present.  Wake up at 4:30, shower, drive to the surgical center for an 8:00 surgery that doesn't happen because the surgical tool (one use thing) didn't arrive on time so it was 10:30 by the time surgery happened.  It lasted about 30 minutes and went "extremely well"  the doctor said with pleased inflection.
    And now, Jarrad is sleeping off the effects of whatever drugs he was given and will, hopefully, wake up with less pain in his wrists.
    Now, this post is to (hopefully) help someone else who might be looking at getting this done.
So some things random things to think about:
1.  We did consider doing both wrists at the same time.  Apparently, this doctor did do it for another paraplegic BUT she was a small woman and her husband was going to be lifting her.  Also, non paras usually do one wrist at a time.
2. If moving your partner into a minivan, bring a heavy duty garbage bag or something slippery to place on the seat after surgery so that it is easier on you to shift him or her around in the seat.
     If I think of anything else that we learned with this experience, I will add it.  By the way, Jarrad just woke up after sleeping all afternoon (oh, the luxury!) and said his wrist is feeling better!