Happy Thanksgiving

   You want to know what I am most thankful for?  That it is over. 
    I tried.  I really tried.  I tried to be thankful for "in the moment things".  I made a turkey - and tried to be thankful that the butcher was kind enough to give me a Butterball at the generic price all because I asked him about thawing the generic one.  I made stuffing and tried to be thankful that Jarrad introduced me to it because it is AWESOME! I tried to be thankful that the kids had fun tearing up the bread for it.  I made gravy and tried to be thankful that it was the best gravy I ever made and that I am the only one in my little family that likes it so it is all mine!
     I tried to be thankful for people.  I tried to be thankful for my family - I have beautiful children. I have awesome parents and siblings.  I have some pretty adorable nieces and nephews.  I tried to be thankful for friends - had a girl's night out last night  - salted caramel martini's and laughter with some pretty awesome women. I tried to be thankful for my community - long distance friends, church.
   I tried to be thankful for things - a house, car, food.  
   And then I looked at Jarrad and try as I might, my thankfulness disappears like the frost did this morning because all I can do is worry. 
   Today, he spent the day in bed.   His incision is oozing blood and his pressure sore has some broken skin - just a top layer as if you had skinned your knuckles. Bad, And I thought it was getting better... He is shivering sometimes and his hip just looks nasty.  I don't know what I am doing wrong; I don't even know if what I am doing is right.  I don't know what to do.  It makes me cry and snappish. 
   I am just thankful that today is over and tomorrow, I can take him to a doctor and maybe they can give us some direction. 
   My worry is overwhelming me and I don't like the person that I am right now.  So I guess it is a good thing that I binge eat when I am stressed because I have finally found something I can truly be thankful for - the left overs.

Post Surgery #1

    Woo Hoo! We are home.  I am so tired of hospitals and everything that goes with it - ugh!   Ok.  So here is how it went.
    We got to the hospital. They took him back  and a little under 3 hours later, he was back.  I talked to the doctor.  It went something like this.
   "He is ok."
    Hmmm, ok?
   "There was a lot of blood." 
   Um, I knew that there would be - we were warned.
    "There was a lot of bone."
    Again, we know.
    "I was able to bring his leg up to 90 degrees and to lay it flat.  You can't really tell the difference between the good bone and the bad bone so we scrap off layers until we see (medical gibberish).  We scrap away the bone and add wax to stop/slow the bleeding.  There was a lot of bone.  The anesthesiologist kept his blood pressure low because that helps with the bleeding.  There was a lot of bone.  When he lost 2 units/liters, I decided we needed to stop.  The body holds 5 and I didn't want to go lower than that.  I want to avoid a transfusion.  There was a lot of bone - more than usual.  He is going to need a couple of months before we can do the other hip.  I am going to need a couple of months before I can do the other hip. There was a lot of bone." 
    And yes, he said "a lot of bone" a lot.
   So this is what I learned.  I called my BIL to ask how long it takes to restore the missing 2 units.  He was concerned as to why they didn't just do a transfusion.  This is what he told me (he is a nurse by the way) or rather what I understood.  They put fluid in but it dilutes the blood or the hemoglobin. Ok, now I get it.  I don't know how long it takes to get it "undiluted" but it is probably a month or so.  This is important as blood carries oxygen as well as all the other good stuff.  And because his blood is "thin", he will be very tired for a while until it gets "thick".  Hence, more red meat and leafy  greens and other things that will be good for him.
    But why not a blood transfusion?  Because your body will see it as "foreign" even if it is your blood type and this can lower your immune system.  As a paraplegic, Jarrad is more susceptible to things like pneumonia.  They wanted to avoid that because even though a small fever is good because it gets the antibodies revved up to fight off infection, you don't want your "forces" to be divided. 
    In summery,  the doctor did not get as much bone as he wanted off.  There is still a lot of bone left.  Usually, they want to bend the knee to the chest.  That did not happen.  If Jarrad wants to, he can go back and have another surgery to remove more bone.  We are going to wait and see.  There is the possibility that the HO can grow again.  In most cases, it doesn't

but it is always a possibility.  Jarrad is a little disappointed that more bone was not removed but the difference is amazing!  We are going to take it easy for 6 weeks while it heals but after that, his quality of life should be much improved. 
   You can see from this picture, the closer leg had surgery.  It now lays flat while the left leg is at an angle.
   The right leg is floppy.  We have gotten so used to the stiffness and now it moves.  Jarrad is going to have to figure out how to balance all over again and how to move but already he can tell a difference in how he sits - it feels better.  

HI H.O., HI H.O., it's off to surgery we go. . .

    We got the call this afternoon.  We are scheduled for  11 tomorrow morning.  I know that this is good but it just seems scary because of the not so good news we got last week.
    So update: 
    Good news - Jarrad does NOT have it on the front and back of his hips.  Yeah!  It is just on the front so that means 2 surgeries (if all goes well). 
    Bad news -
    Wait!  I like to start with the bad news and end on a positive note.  Yeah, me too.  However, I need to do it this way.  SOOO . . .

Breakfast for those who need iron and protein

    Bad news- The blood tests show that his HO producing levels are still a little high and he is anemic.  We would wait a bit longer and get the levels down further and up his iron BUT the HO is such that he is not putting any weight on the "good" bone (the bone that is supposed to be there) and has developed osteoporosis.   So that means that we need to get it taken care of now. 
   The good news is that it is in the hip that "hurts" the most-  the one he wanted to start on anyway.  I am not sure what that means but he says it "hurts".  One of the ugly side effects of SCI is being able to feel the pain but not the love.  I have given up trying to wrap my brain around why he can feel some pain.  I am just going to roll with it from now on.
   So, in the last week, Jarrad has eaten more spinach and red meat than he has ever had.  He goes to work and gets a spinach and steak salad.  He takes Geritol.  Tonight, I am steaming lima beans.  We have had steak, spaghetti, hamburgers.  He gets eggs with spinach or peanut butter on sprouted grain breads for breakfast.  And raisins.  His iron had better be up. 
    This is considered a high risk surgery.  It is because they go in and chip away at the bone to remove it.  There are blood vessels there that if nicked could cause him to lose a lot of blood.  We have been "cautioned" that this is high risk by doctors and by the generic readings online.  However, we have communicated with 3 different folks who have had it done with no problems.  And this doctor seems to be confident that all will go well.  Read - no reservations that the SCI doctors (who are older, by the way) had.  I am a little nervous but Jarrad has always been an excellent surgical patient and he has had 7 surgeries - 5 of which are SCI related. 
      Still, keep us in your prayers. 

Organizing the wheelchair

    When Jarrad got his chair, it came with a "free" back pack.

Under the chair bag

    "Hey folks!  Buy a 5,000 + chair AND get a FREE back pack for it!"
    OOOOO!  So exciting!
    I know, I am being ungrateful.  Actually, it is good to have.  It is designed to hang on the back of the chair and Jarrad puts his laptop in it and other things that he needs to go to work - like paper work.
    He also used to put his wallet in which made me nervous. 
    SOME folks see folks in chairs as targets.  One of the reasons why I am very glad that our ramp is out of sight at the back of the house.  Apparently, a ramp is a sign that it there is an easy mark and a lot of drugs.  So his wallet in that back pack was not making me happy - I just had visions of someone stealing the wallet and creating a paperwork nightmare and we did not need more paperwork. 
    We went to a Quad Rugby demo and while there, we met a lady who had a bag UNDER her chair.  Jarrad found one on Amazon that he put on his wish list and got for his birthday.  It is easier to get to and safer too.  It also doesn't throw off the balance of the chair for someone who has to lift it and put it in the back of the van. 

This is a men's shaving bag that I picked up at Target.  It holds catheters and a small pill holder. 

There are 2 pockets on this bag.

The smaller pocket holds wallet and keys. 

Saturday

   Ahh!  Today was great.  The kids let us sleep till 8:30!  Whoo hoo!  And we got to go see Ender's Game at the IMAX!  Where, get this, the handicap seating was at the side - grrrr.  Hate having to sit right where everyone comes in.  You feel like they are breathing on your neck as they decide on where to sit.  BUT the aisles were wide.  So we rolled down the aisle to the middle, Jarrad transferred out of his chair to a movie seat; I pulled up his cushion and put it on the next seat and he slid over.  Comfy AND in the center of the theater, where we want to be!  There was even room to park his chair behind us.  SCORE!
   Now, he and the kids are watching the LSU kick off.  Nice.  These are the days that my soul needs.  Days where a chair doesn't matter.  Where pain seems none existent.  These are the days that keep me going. 

Heterotopic Ossification Update

   Jarrad went to see Dr. Dahners on Thursday.  We were nervous for 2 reasons.  1.  Because we had heard/ read reviews that he was conceited and had horrible bedside manner.  and 2.  That he would say no.  
   Our fears were relieved.
   Jarrad found the doctor to be confident and efficient with his words and time. He said he was very matter of fact but listened and answered questions.  When asked about his mortality rate, the doctor said he has lost count of how many surgeries of this type he has preformed and has yet to lose a patient.  It is considered a high risk surgery.  But there was something about his manner that Jarrad found reassuring.
   Good.

Not Jarrad's bones but gives you an idea of HO

   Jarrad is scheduled for surgery on the 20th.  Yes, that is a week and a half away.  Of course, his blood work needs to come back with the go ahead.  The blood tested to see if the growth has stopped or slowed to a significant level.  On Thursday, he goes back for a CAT scan to "map" where blood vessels and nerves are.  Damage to these areas would cause a recurrence of growth.
   Right now, Jarrad is "locked" into place.  His hips have 85 to 90 degrees of range when sitting and when lying prone, 170 (roughly).  Meaning that he can't lie flat.  He has lost mobility because I now have to put his shoes and socks on and get his pants started.  He can't close his legs or open them wider.  The bone is a foreign agent so it causes swelling and causes pain.  Right now, he is on some heavy duty anti inflammatory meds.  This gives relief but not a lot.   His left hip has HO on both sides, probably due to the broken femur, and then tibia and fibia.  His right hip has it only in front.  This means that he might have to have 3 surgeries.  The doctor did say that if things are looking good (I am assuming little to no blood loss), that it might just be two.  Right now, his first surgery will be on his right hip. 
    So pray that 1.  It will go so well that they can do just 2 surgeries.  2.  That the hospital stay is brief.  3.  That he gets range of motion back and that there is no new growth.  4.  That this results in less pain.
    If successful, it will improve Jarrad's quality of life.  He will be able to bend his hips which will make transferring easier and will (hopefully) be in less pain which means less meds! 

more travel

    We just completed our 3rd trip.  Since we will be going to PA on a regular basis, I am starting to really look at how to make life easier when we travel.  I know that as the kids get older, we want to take them on trips around the states.  So it is important to me to figure out how to travel.  Based on our travels so far and some really sound advice, I have divided "a good trip" into sections:
1.  Packing
2. A place to stay.
3.  Bowel/bladder
4. kids
   Lists - I am going to type up a master list and check it twice.  I would hate to get caught without meds or catheters.  Jarrad always says we will buy it if we need it but somethings you just can't walk into a Wal- Mart and get (maybe some stuff outside . . . ).  
   We stay at the Hampton Inn in PA. Before IT, we would stay at my folks house but that isn't happening now.   My folks offered to let us sleep in their room but there is no way that Jarrad would be able to use their bathroom.  As it is, when he needs to cath, he goes into their room and I empty the urinal.  Not a big deal.  But I know that he would miss not getting a shower.  If, however,  my vibrant family and adorable nieces and nephew wear him out, he crashes on my folks bed and I keep cuddling babies so that part works.  My dad made a ramp which brought me to tears because I don't have to pack the portable one and well, just the gesture was good to my heart.  My mom went and checked out local hotels for us and the Hampton Inn in Ephrata was the nicest that we could afford. We are now members so we should be getting a free night soon.  It is nice.  The staff are polite, rooms are clean and the breakfast is ok. They have a lift for the pool which makes Jarrad happy.  Not too far from a Wal-Mart, Urgent Care and the rest of the family.  
     Since we go up for several days, I bought a mattress topper to go on top of the bed because it is SUPER soft and you can kind of feel the springs - it is a hotel mattress after all - and I don't want Jarrad to get a pressure sore if a spring rubs him for a couple of hours during the night.  We take his pillow and they have enough extra for me to prop him up.  The bed is higher than ours so we make sure we have a sliding board for him to use.  It also doubles as tray if we need it.  If he just wants to stretch out, he uses the chase that is in the room.  Since all of the hotels are alike, I think we will try to find Hampton's for other trips as well.  We stayed at a Wynngate and that showed us that just because it says it is accessible doesn't mean that it will be accessible when you stuff it full of furniture and then refuse to take it out.  Harumph.
    We do take his shower chair.  I take it apart and put it in a duffel bag but I think that we are going to get a smaller one for travel. 

This is similar to what we have

This is similar to what we might get 

     I have talked to others who say that they don't bother with a chair.  Jarrad likes to have a chair - hence the smaller one.  He likes to shower and I don't always like the looks of the shower "benches" that I have seen.  I also haven't heard good things about the placement of benches at a lot of places. You can see that the bench is pretty low compared to the bench that we use.  And I even made our bench lower than his chair.  Also, see where the grab bar is?  I don't like it being so far forward.  Made me nervous.    What you don't see is the yoga mat that I throw in the duffel bag with the chair.  The curtain is a good 6 inches off the floor and with no curb - water goes everywhere.  The yoga mat gives us some traction. 
   This last trip, I did look around more critically at what we could use to make life easier - such as a caddy to keep things that correspond with bowel and bladder.   I am going to keep my eye out for something that can be "squished" and yet still keeps it form and can be washed.  I would want one for bowel and one for bladder.
    Kids.  Haven't figured out that one yet.  The good thing is that they stay at my folks house and I don't have to wrestle them to bed and keep yelling at them to go to sleep.  Not that I do that a lot now because usually they are worn out (and my parents put them to bed - hehe!) I don't know what we are going to do when we travel other places. Fortunately, I know we would ALL go to bed at their bed time but not all of us would go to sleep because it is just TOO much fun to be in a hotel room.  And the giggles and whispers and the "Mommy, he/she . . . " will make for  a long night.  
    Look, my eye is twitching just thinking about it!
    Any suggestions? 

                                         

Happy Halloween (a few days late)

Before wheels - a fairy princess and Super Sam 2009

    We live in a big neighborhood.  Huge!  Lots of families, every street has a police officer living on it (no, really, you go down a street you will see a cop car parked at least one house), lights and soft curves that (are supposed to) deter fast driving.  So it is little wonder that there is always a huge turn out on Halloween night.
    Used to be really huge - like crazy.  You could have just taken the 30 or 50 bucks you spent on candy and thrown it and you woul
d have gotten rid of it in 30 seconds.  I remember when Emma was born.  She was a week old and I hadn't bought candy.  I remember sitting on the couch in our living room trying to nurse her and folks were knocking on the door and peering through the glass.  I didn't have the front light on either.
    When we first took Emma trick or treating, we went downtown.  One of the benefits of living in a small town is that there is a great sense of community.  We would park at the CVS, walk up to the church that had it's trunk or treat and come back the other side - that was it!  It was quick, safe and fast.  Then we would come home and just hand out candy.

Super Pink and Cowboy 2011

    Now that Jarrad is in wheels, we don't do that.  He stays home and I walk the kids up the street and then down.  It works.  But I hate it.  It is one of those things that I would like to do together.  And maybe, as he gets stronger and is in less pain (which I am hoping will happen after his HO surgery), we will do more of those things.  We can't do down town - too crowded and weird sidewalks but our neighborhood is nice.
    That's it for the "wheels" aspect of it and now onto other aspects.

Firefighter and fairy princess 2013

    I will give candy to anyone who comes to my door IF they make the effort to dress up.  If not, no candy for YOU!  And yes, I have refused candy.  I DARE you to egg or toilet paper my house!  I have some aggression I need to release especially now that I don't go to yoga (I miss yoga).  I read a really good article about older kids
that really spoke to my inner mom.  It was sweet.  But you still have to dress up  - and do kooky please, not scary and I will be generous.  The other article I read was about Christians
and how we perceive Halloween.  It made me think - hmmm, what could I do?  Something to mull on for next year.
    Something else to mull on is how to incorporate a "trick" into next year.  We went to a house where the couple was sitting on their porch and had 2 baskets.  One had candy and one was empty.  He asked which one they would like to pull from.  Well, my kids are like the one with the candy - duh!  Not the empty one.  I was a little nervous because I thought it was a "put your hand in and something will grab it" type of trick.  It wasn't.  Instead, he would reach in and pull out a red light and pop it in their baskets.  Of course, it would disappear but for a minute their eyes were big with wonder and it was neat.

    I like the innocent Halloween.  The one that is made up of dreams.