A tribute

    We just got back from our 3rd trip.  It was . . . um, I don't know.  The point of the trip was to see a friend who is dying.
    When we found out that she had cancer, we tried to see her.  I don't know why but she and her husband decided to limit visitors to their home.  Nothing wrong with that - their decision and I respect it and them.  When it got to the point that she needed more care than he could give, they went to a hospice facility and allowed visitors.
   We went up as soon as we could.
   We spent 2 hours at the facility - mostly talking with her husband because A was sleeping.  I saw A for 5 minutes and in that 5 minutes watched her eyes go from drowsiness to pain.
   In 5 minutes.
   She doesn't look like herself.  Her body is small and big all at the same time.  Her voice sounds small and unsure and this lady was never unsure.  
    It hurts to see her like this - in pain and not who she was; who she really is.
    Let me tell you about her.
    My first "real" job was as a long term substitute.  I was coming into an awkward situation.  I was a long term sub for a long term sub who decided that teaching was not for him.  I remember one of the classes saying, "Yeah, we ran Mr. So and So off.  We are waiting to see how long it is before we run you off."  And this wasn't a city school, folks, but a farming community! 
   As a new teacher, you are supposed to get a mentor - someone to show you the ropes and give you advice.  As a substitute, it was not required despite my being a new teacher.  I was just thrown in the deep end and told to swim before the sharks got me. 
    Fortunately, the pool had some great coaches that took it upon themselves to make sure I would survive.  A was one of them.  She already had a men-tee but she took me on as well.  I learned a lot by just watching her.  She was who she was and was comfortable with that - important when you are dealing with folks who aren't comfortable with themselves.  They are hyper aware of frauds and will not respect you if they think  you are one.  She genuinely cared for her students (and others) and was probably the most diplomatic person I knew.  You could tell her anything and know that 1.  You weren't being judged and 2.  She would keep it to herself - I readily admit I fail in that aspect.  She listened.  She was so subtle in redirecting your thoughts and opinions that you never knew it.  She also had high standards and was very intelligent.  She wanted education to be better.  She knew it should be better from the top down too. 
   A, B (the official men-tee), and I became friends.  B and I would always say we wanted to be like A when we grew up.  She was the type of woman who knew how to change a tire and talk to a farmer (and I mean Amish farmer) about the latest crop and then could dress up for a black tie function and hobnob with foreign dignitaries.  I remember telling her that I wanted Emma to grow to be just like her. 
   I remember the look on her face - she was so pleasantly surprised.   I don't think that she realized how much I admired her. 
    I am glad I told her. 
   

7 years

    Today, Emma turns 7.  She is a source of joy for us.  She is a reminder that there is good in the world.
    Tonight, I will make sure the car is packed before we head out of town.  We are going to visit a friend in hospice.  We tried to see her in August but she wasn't letting anyone come and see her then.  Now, her room is the party room.
    I have these 2 pictures in my head - of a pink cake with 7 candles on it and a room with beeps and wires and monitors.  And think,
     "Don't grow up anymore.  Stay 7.  I will make you a princess cake every year if you will just stay 7."
      Not because I want her to stay little but I want her to stay innocent.  There is so much pain in this world.  Sometimes, I wonder what we were thinking to bring these 2 beautiful children into this world. Why?  When we worry about the state of our government?  When we worry about our health or our friends?  Why when it seems that there is more grief than joy?
    And then I remember her faith.  She prays every night for Daddy's legs to feel better.  She knows that he may never walk again but she has faith that he will feel better.
     I remember her bravery.  The intensive care unit is scary - there were some pretty beat up folks there and a lot of pain.  But she was determined to see her Daddy - no matter what. 
   I remember her imagination.  It is posted on the fridge.
   I remember her gentleness with her brother and smaller children.
   I remember her sense of humor.  Knock knock jokes have never been so funny.
   I remember her love of dance.  She is so free.
   I remember her spark when she makes a connection with what she has learned to something new.
   She is smart, loves to read and dance.  She has discovered that boys are cute but won't admit it.  She has her own opinions about fashion and is learning to stand up for herself and others.  She is trying new food (spaghetti and eggs!!!).  She makes friends so easily.
      So while my friend is dying and I think, we are too young for this and while Jarrad is getting used to his new body and we sometimes grieve what is lost, I will look at my beautiful daughter who said to me this morning,  "Mommy, you are the best present I could ever have."
   Happy Birthday, Sweetheart!

Follow up to pressure sores

   In my last post, I promised to write why I was talking about pressure sores.  So bear with this post because it may get a little wordy (I heard that!  No more comments from the peanut gallery!) or it may be jumpy - all to get to the point.
     It is difficult to wade through the information that you find on the internet.  Difficult because there is a lot and difficult because reading it can be hard.  Take heterotopic ossification - we had talked to folks about the surgery and been told it is scary and you can die from blood loss and the recovery time is long and it might not work and you should have radiation and you shouldn't and . . . and. . . and. . .
    It is a little overwhelming.  Frankly, Jarrad's SCI doctor isn't helping at all.  His doctor at Moss said to stretch and put the fear of God into us that if we stopped, there was no cure and to avoid surgery as it was dangerous.  
    Fast forward . . .
    2013 and I am talking to someone about Jarrad's HO.  She says - I know someone who has that.  Let me pull up his blog.  And there it was. Wow - someone local who has a similar injury to Jarrad and has HO. 
    We, for the past year and a half, have been trying to get connected.   Jarrad has gone to group and we have gone to events but how can I put it?  Just because you have wheels, doesn't mean that you are going to be friends.  Or that you are going to get helpful information.  I did meet some nice ladies at the couple of meetings that I went to but they are busy and I can't go to the meetings because they are during the day.  Jarrad's group meetings seemed to consist of folks who have been in wheels for several years so that they don't remember or they haven't heard of things like:

heterotopic ossification

botox for bladder spasms

carpel tunnel surgery

or other useful tips like how to get around.  

   Enter the internet and research.  Youtube is good.  Pinterest helpful, but there is something about the human connection.  I tried to reach out to a couple of bloggers - got no response from 2 and a rudimentary response from one that made me feel like she would rather not answer any questions.  Kind of left me feeling very isolated when I had hoped that I could at least make a connection that way.  I still read the blogs but it is now with the feeling of a 9th grade, pimply faced girl staring after the got it all together seniors.  

      So when Jason -of the aforementioned blog- responded, it was great.  He and Jarrad have communicated and discussed a lot of stuff - like tips and the fact that he has had HO surgery (did I mention that they were both injured in the same year - a month a part?  Or that they both work with computers?).  

    It made me think, though, that I need to focus on our life now in a wheel chair and how we deal with things- just in case someone comes knocking at my virtual door. I want them to feel welcome. 

   

Pressure Sores

    I think that I may have mentioned pressure sores before.   They are something that a wheelchair user must constantly be on the look out for.  A hint of redness that does not blanch ie whiten when pressed on is something for concern.  Pressure sores can lead to holes in the skin and can occur any time there is prolonged pressure by a bony prominence on the skin.
    That is why weight shifts are so important for wheelchair users.  When we (ambulatory folks) start to get uncomfortable aka when bones are pressing into our skin, we shift.  We do it without thinking.  I bet you have shifted a couple of times as you read this.  That is what keeps us from getting sores - our unconscious response.  For folks in chairs, that response isn't there.  It is something one must be conscious of.
    We were told at Moss to shift every 20 minutes for 2 minutes.  A shift, at first, consisted of leaning over to one side and then the other.  Now, he leans forward.  There are other methods - such as pushing up; we are working up to that.
     There is a whole formula for weight shifts and how long to go between shifts and duration etc (click on link above).  Jarrad does one every 40 minutes and for 2 minutes.  He gets a little nervous if he forgets because he gets sidetracked.  So we have a timer on his chair.  It helps to keep him on track.
     Why is he so careful?  Because he has had a pressure sore.  He got it when he fell and it was caused by "shearing" or the skin rubbing one way and the bone another. 


http://sci.washington.edu/info/pamphlets/pressure_sores.asp

    Here is a cool (?) picture of what happens when a pressure sore is untreated -  you can get a hole to the bone.  Jarrad's pressure sore was just under his shoulder blade.  The bad news (wait, that should be "the worst news") is that once you have a pressure sore, you have to be really careful because you can get another in that spot.  For us, the good news is that it is highly unlikely that he will get another one in that spot.
      So - why am I writing about this?  Tell you next blog - I think - it is good; it just requires more than I want to write now.
      Now, if you are squeamish, don't look at the following pictures.  They are of Jarrad's pressure sore. 

This is early November 2012 - You can see new skin growth.  This is the first picture I have - be glad because the earlier ones were really bad.  Oh, and his surgical scar. 

This is late November of 2012.  You can see how much healing occurred in 4 weeks.  As you look at these picutres, you can really "see" the black and white illustration above.

This is March of 2013.  Again, look at the healing.

November 2013 - one year later.  You can also see his spinal surgery scar and how much they have both faded in one year. 

  

in a Standing Frame

    You never realize what something as simple as standing can do for you.  Of course, you never miss something till it is gone. So if you can stand, you don't think about the benefit it has for your body.  Not walking, not running just standing.
Here are some examples.  All are benefits for Jarrad as a para but some are ones that I (and you) need. 

Midway through his session.

•Prevention of contractures (the permanent shortening of muscles or joints that no amount of stretching can restore this means you won't be able to bend things like ankles, knees, and hips)
• Improvement of range of motion (spine, hips, knees and ankles)
•Reduction in spasticity (the tremors that will rack a body because it is trying to send a message to the brain if you are paralyzed)
•Prevention or reversal of osteoporosis and resultant hypercalciuria (elevation of calcium in the urine with is bad because it can cause voiding issues)
•Improvement of renal function, drainage of the urinary tract, and reduction in urinary calculium and in bowel function (ie - helps you go potty)
•Prevention of pressure ulcers through changing positions (again, bad as it is a hole in your skin to your BONE! BAD!)
•Normalization of respiratory function aka helps you to breathe
•Maintain or re-gain bone density
•Development & improvement of upper body strength & balance 
  Did you ever think about the fact that STANDING helps you go to the bathroom?  Or that it helps to maintain your ability to walk because you are stretching muscles and joints?  No, we just stand and complain when our feet hurt (although, now that I buy good shoes, not complaining about it so much).  
    When Jarrad was in outpatient therapy at Wake Med, his therapist had him up in a frame for 30 minutes of the 45 minute session.  That was how important it is.  We were really grateful that Vocational Rehab saw all the benefits of the standing frame to Jarrad's overall ability to work and health and paid for our frame. 
    I have to be honest though, while it is a good thing for Jarrad, I saw it was one more piece of equipment that I had to find room for in my house.  Happy to have it.  Dismayed at yet another "thing".  
    Until one of my friends dropped by.  
    One of my therapy friends.  
    Occupational Therapy.
    Now, most people look at this "thing" and ask what it is.  She looked at it and knew right away.  
   "Wow (or some other sound that indicated pleasant surprise)!  Is that Jarrad's standing frame?  It's beautiful!"  
     Made me laugh.  Because in my head I was saying - Yeah, another piece of equipment! But her simple and genuine response changed my attitude because she was seeing all the benefits  that it brought. 
     And it made me see it in a different light too.   

It came!

   Whoo hoo!  Jarrad is now a licensed driver!  He took his test last Wednesday and passed!  His license is reinstated.  
   Very exciting!  What a relief!  One more step towards normalcy.  
   We enjoyed that for a while until we got the response to our question "What is the time line to getting a van?" from the Vocational Rehab Engineer.  It went something like this:

"we also received preapproval to proceeding with funding your van"

 YEAH!  

 "The next step is for me to generate a preliminary financial agreement that will break 

down the VR and client contributions. We also need a packet submitted to the state office.  

 When the packet gets here, I review it and then send it to the Policy Section for their review.  

My review will be fast because of my involvement in the case.  Part of the Policy review will 

be to send the packet back to DHHS and have the project approved by the Secretary. 

 It’s hard to say how long it will take for the approvals but 1-2 months isn’t unheard of."

  Ok - we can deal with that, right?  1-2 months isn't bad, right? 

"Once approved, the purchase goes over to P&C (Purchasing and Contract NCDOA)

because the amount is greater than $25,000.  The process of bidding, reviewing, 

certification, etc. takes about 2 months after which we at VR Purchasing can issue a 

 PO for the conversion minivan.  Usually, delivery of the minivan is around 30 days or less.  At 

some point before delivery or just after delivery, we’ll start the process of bidding out

 the driver modifications which takes about 2 weeks and issuing a PO.  The installation with 

fittings will take about 1.5-2 months. Then you’ll take delivery of the modified van and 

complete any training left.  So adding up all the times you have 6+ months."

REALLY????  

SIGH.  

I 

can't 

even  . . . 

Please pray that it doesn't take that long.