just can't seem to get started . . .

   I have started 5 (5!) posts and haven't finished one of them!  I just can't seem to get started.  So here is a brief run down of our week.  Perhaps this will kick me into geer.

     Monday- kids are home from school.  Fed a neighbor's chickens and got to keep the eggs.  Gave half away and still ended up with 18!  A couple from church stopped by with a rotisserie chicken just because they wanted to.  Isn't that nice?
     Tuesday - Lots of cooking.  Fed the chickens and got more eggs.  I had a "moment" because I am crazy and want everything to be just right.  Jarrad stepped, well, rolled in and made cookies with the kids so I could get stuff done.   I need to find a way to relax so I don't freak out at times like this.  Maybe it is poor planning or stress - who knows!  I will figure it out later.  At least we had dinner for that night! Later, we went and looked at Christmas tree lights.  This was the first time Jarrad had been out of the house since he got home.  Usually, we go to Christmas Eve service and eat at a Mexican restaurant with friends but their kid was sick and we were still being careful of Jarrad.  However, the tradition will resume next year! 
    Wednesday - Ahh, Christmas Day.  We started in bed - opened a few gifts and then the kids wanted to play with what they got until after breakfast.  No, really it was their choice.  I know, weird.  Had breakfast and opened stockings.  Finally convinced Jarrad that the breakfast casserole he always had as a kid for Christmas day was no longer going to be made.  The only one who likes it is Jarrad.  I feel bad but after having it for 9 years, I think I can say that I really tried.  I think that kids have also had enough "no thank you" bites to say that they have tried.  New tradition next year.  We then opened more gifts - all great - thank you everyone!  And then, took a nap!  My favorite gift on Christmas day is that there are so many new toys that I can take a good nap.  Friends came over for dinner and we all had a good time talking and playing Star Wars Operation.

       Thursday - Jarrad's follow up appointment - dun dun duh!!!  Everything looks good.  Finally!  I feel like with this doctor there is always the other hand.  He will see us in 4 weeks for x rays.  We will probably wait until next November to do the other hip.  We need to wait a year just in case we need short term disability again.  Jarrad and I talked and we both need time to recover.  We also discussed that while we were as prepared as we could be - research, talking with others; we are going to be even more prepared this next time so that *hopefully* we won't have the complications that we did this time.
    Friday - Did a little shopping.  Found an organizer for my side of the sink - whee!  It is the little things that can make a girl happy.  CLEANED UP ALL CHRISTMAS DECORATIONS!  Yep, all put away!  Go me - go me!  I like to start the new year that way.  Had friends over for pizza - tried a new place - mah.  It was ok.  But the company was great!
   And now it is Saturday - a whole day of potential!   

Dear Santa

    I remember when my kids were littler, Santa scared them.  Oh, from a distance, they would be fine.  But when you got up close, it was a different story.  For awhile, they would only talk to Mrs. Claus.  Good friends have a costume set and would go around the neighborhood as one or the other.  Mrs. Claus would come to a playdate and read us a story and give out little bells.  Santa would come later.  I think that I only got this picture because Mrs. Claus was there.
    Emma seemed to be scared till about 5.  Sam, he got over his fright last year.  But their fear never stopped them from asking for presents.  Emma wrote her letter this year and Sam dictated his to me.  I thought that I would share. 
       Emma wrote that she is a good big sister (she really is) and good BFF (she and her BFF wrote the letters together) and helped decorate the house for Christmas (the kid practically knocked me down to get to the decorations).  She said that she wants Skylanders (sorry kid! Will Disney Infinity do?) Aladin (ahhh!  Not released!) and a Switch and Go Dino (so she can play with Sam).
    Sam wrote that he has been both good and bad (at least he is honest) and that he cleans his room and makes his bed (under severe duress) and that he doesn't always listen to Mommy (true - I think it might be a gender thing) and he would like a Switch and Go Dino, a scooter, a dragon, a new Big Boots and a Helicopter Switch and Go Dino.
    He is getting the Dino . . .
    Their letters make me laugh.  I take them to Target and let them make a list that I turn around and send to relatives.   They don't have to buy from Target but it gives them an idea of what the kids are into (and sizes).  And the kids get to know that they don't get everything that they put on the list.
      Do you ever want to make a list for Santa?  A long, impossible list?  Did you see you seen the airline that gave its passengers presents?  It is pretty cool. The kids all ask for things with an assurance that they will  get it.  The adults ask for things and laugh and roll their eyes because there is a bittersweet fun in the asking.  As the video progresses, the real fun was in watching the adults.  For them, for a moment, it was like being a kid again.
    I wonder what the airline would have made of my list?
     Dear Santa, 
    I think I have been pretty good this year.  I have tried to control my temper - not always very successful, I admit.  But I think my patience has improved.  So Santa, if I could have anything in the world, I would love it if Jarrad could walk again or least not be in any pain.  I know that is probably beyond your ken, so instead, I would ask for an accessible house and a van.  I would ask for a time/space warp machine similar to what you use on Christmas night so that I could go visit my folks and friends in the blink of an eye.  A winning lottery ticket would be nice too.  
   So Santa, if you think you could see your way clear to any of these things, that would be great. 
Sincerely, 
Belinda
Age 37
   There is something in the asking.  I know that we will have the house someday - we have a plan! And hopefully, the van will happen in the next couple of months - it would be awesome if it came on Christmas!  I would actually have to buy a lottery ticket for that to work and who knows what breakthroughs science will come up with?  

Jarrad is home (again)

   This adventure has lasted 30 days.  I can't believe how long it has gone on.  And it isn't even over yet.  We go back to see the surgeon on the 26th.  This means that we will probably have the wound vac till then.  At least it is just the size of a small purse. . .
    I am tired.  Jarrad is tired.  The only ones who aren't are the kids.  Of course!
    I wish that I could say that this is it for us but we have to do the other hip in the spring.  Jarrad is sitting up straighter and looks so much better.  He says he isn't in as much pain and if his face and eyes are anything to go by, I believe him.  I think that we will be more cautious next time.  We will plan more for things to go wrong as opposed to going perfectly.  We will also know more.  I think that we may insist on a transfusion next time.  And really force the issue of home health visits.  
    As for Jarrad, physically, he has a huge hole in his thigh.  It is about 1/4 inch deep and as round as a quarter.  The wound vac is supposed to keep it dry by sucking any seeping blood out.  Somehow, the vacuum also speeds up healing.  We just have to make sure he gets lots of protein.  Then we have to make sure we massage the area to reduce scar tissue.  He also needs to get a lot of iron.  When we left, his HGB (hemoglobin) was at 9.  He did lose some blood when he was in surgery.  Still, 9 was higher than we left with the first time we came home.  Emotionally, he is just glad to be home.  He knew he needed to go and he knew he needed to stay but he was ready to leave on Saturday.  Mentally, he is ok.  He is on short term disability for the rest of the year and he plans on working hard with OT and PT to recover his lost strength from being in the hospital.  Did you know that for every day you spend in bed, it takes 2 to recover?
   The kids have their programs this week so he needs to save some strength for attending those.  They should be a lot of fun! 

Update # 4,598

    Blah -  I hate this. All of it.  I have been putting off writing this because my brain hurts when I think about it - I don't understand all of the information that I am told.  And sometimes, I feel like Jarrad and I are hearing 2 different things because I am not always there when the doctors/nurses come in.  I also hate the fact that I am relieved that Jarrad has round the clock care that isn't my bumbling self.  I hate the fact that he isn't home and is stuck in a hospital that is far away.  I hate that the house is a wreck and that I can only sleep when I am exhausted.  I hate that is December and he isn't here to enjoy my determination to do everything right!
    I will try to convey what I know and understand so far.  On Wednesday, it was decided that they were going to debreed the incision - that means clean it out surgically.  The doctor thought that the bone was creating a bowl and that the blood was pooling in it - like a stagnate pond.  Oh - and did you know that blood separates like milk?  Maybe I did a long time ago . . . anyway, the stuff leaking out was the plasma part and the rest was settling into the "bowl" and becoming a breeding ground for bacteria. When we went home the first time, the doctor told me to lift Jarrad's leg to 90 degrees when he laid down to push the blood out.  Ok.  The first time I did it, blood went squirting out everywhere!  Yeah.  It was gross.  I don't know why I thought it would stay inside . . . but then it started seeing out on it's own and bleeding through the bandages . . .  that is when we went to the GP and consequently to the ER.
    Back to Wednesday, December 4th,  Jarrad went into surgery around 3 pm.  Fortunately, there wasn't much of a bowl and the infection had just started.  They were able to clean it out.  Unfortunately, in the original surgery on the 20th, some of the bone on the top of the femur broke off.  I am not sure what or how but it is probably because Jarrad has osteoporosis. I am not sure how bad that fact is...
    The incision looks good so far.  They hit Jarrad with a broad spectrum antibiotic because they aren't sure what the bacteria is.  Jarrad is hooked up to a wound vac which sucks the blood out so it won't pool like it did before.  It will even come home with us for hopefully just 2 weeks.  Home Health is going to come out and change it and check it (like we wanted them to the first time. . . )
    Jarrad looks pink and not gray.  He is ready to come home.  I am ready for him to come home and I feel like I will be a better person because I know that someone who knows what they are doing will be coming in to check on him. 

Hospitals and I have a love hate relationship

    Jarrad is in back in the hospital.  Ok - He got home on Friday - the 22nd.  His hemoglobin level was 6.7 and he felt good.  Saturday, he got up for a couple of hours. Sunday, got up.  Said that other than feeling light headed - a result of anemia - he felt fine.  The pain was down - score!!! 
   Monday, good, up. Tuesday good.  Wed. good, up.  Then that night, we noticed that his incision was leaking more than it had been.  So we covered it and then had to change it and change it again.  He spent all of Thanksgiving in bed.  On Friday, he went to his GP.  She said to pack it and apply pressure.    We did.  Didn't stop.  Got up on Saturday only to use the restroom.  Pulled some staples out.  We redressed it and applied pressure.  We thought that maybe the staples being pulled resulted in more blood.  We changed the dressing every 3 hours.  The blood started to smell fishy and the skin was looking gray. 
   Today, he called the surgeon. 
   Once again, our fabulous, amazing, Angels on Earth came to the rescue.  Big C took Jarrad to the hospital (hope you got some studying done. . . ) while Middle C and Little C came to keep us company. 
    Oh, and today, was my birthday.  Yeah.  37. 
   Anyway, my wonderful husband said, "Take the crew and go see Frozen."  Well, he texted. (Great movie - by the way.)  Because he knows me.  He knows that I need to be distracted.  He knows that I will feel guilty.  Because even though we have these amazing friends who I would trust with my children in case of a zombie apocalypse, I feel guilty asking for more than a couple of hours to watch my kids.  And I know that they don't mind but it doesn't stop the guilt.  AND I feel guilty for not going with him to the hospital. 
   Yeah - guilt! 
    This is the hard part - because I could have just taken the kids to the hospital too.  But see, for 9 weeks they went to the hospital or skilled nursing facility EVERY DAY.  They had a week off when they went to Grammy and Grandpa's and they had a day here and there but they went and crammed their 3 and 5 year old selves into a roughly 10 by 10 square foot room for 2- 3 hours every time.  I don't want to do it to me again.  I don't want to do that to Jarrad again. And I definitely don't want to do that to the kids again. They were so afraid to even touch him because they might hurt him. . . I just don't want them to have to do that ever again. 
    And I know I will have to.  But if we - Jarrad and I - can prevent it, we will.  It is part of being a parent.  It means that I have to let him go and he has to go sometimes by himself.   A hospital means that something is wrong. It means long hours of sitting in bed and being checked and monitored and uncomfortable beds.
    UGH.  I hate hospitals.
    But I also love them - because his hemoglobin level was at a 4 when they admitted him.  He is going to get a transfusion and they are going to give him antibiotics and get him healthy to come home.  A hospital saved his life.  I don't go there too often but sometimes, I do - just a little bit before I stop.  Our therapist at rehab said that we should play the sound of a video rewinding whenever we "go somewhere".  I think of that noise and stop.  She so had her finger on my pulse...  so, I do love hospitals too. 
   I just wish we didn't have to use them as often as we do.
   Oh, and my birthday presents?  Thank you, thank you all for being amazing and fabulous people.  You are the best presents EVER! 

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.  

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.

      

 

 

hot vs. cold

    I used to sleep with my feet outside the blankets -they were always hot.  In the morning, my side of the bed would always be twisted up; I hated to feel confined by my bedding.  Jarrad, however,  liked to have hospital corners on his side.  Then, we had kids and something changed.  My feet were like ice and I used Jarrad as a foot warmer.  THEN, IT happened and I wear socks to bed because my foot warmer is now always cold.
   This is a problem that is experienced by probably 99% of couples everywhere.  One likes to be warm, one likes to be cool.  And a zillion other bed and bedding preferences that also change as we get older or as events occur.
    This usually isn't a problem because if one person is cold, they can get up and get another blanket.  In our case, the person that was cold would take twice as long to get the blanket so the other person - who was just drifting off to sleep- would get up and get it.  Not because that person was kind but because that person would still not be able to sleep until the other person was settled.  So you can imagine that this person was not always gracious. 
    Since Jarrad was always cold at night, I thought I would trade out the light blanket for a fleece one.  He slept comfortably.  I roasted. 
   He jokingly suggested 2 twin blankets - a light weight one for me and a fleece one for him. 
   BRILLIANT MAN! 
   I went out and bought 2 twin blankets. 
   He was joking.  I think he is a genius. 
   In order to get around the too much overlap and bulk when making the bed, I cut off about 12 inches from each side, overlapped and sewed them together.  Since I was working with 2 very different materials, it may not look pretty but it makes one blanket big enough to cover a king size bed. 

     Now, ask me how I slept last night.
     That's right - I married a brilliant man! 

and other blogs

   When I first had Emma, I was incredibly lonely.  I think that there was a bit of post postpartum there too.  But I had just stopped going to work, and was in the house BY MYSELF every day.  Jarrad would come home from work and would have used up all of his words so that was no help.   Emma liked to be held as - as all babies do -  and cried. Holding stopped the crying, so I held.  Eventually, I learned but in the mean time, I sat and read magazines while I held my child so she wouldn't wail.
   In one of the parenting magazines that I read, the author talked of the importance of play groups.  If you are a parent, you are probably going "Well, DUH!"  And if you are not, but want to be, you will learn someday.
    What really struck me was that the author said something along the lines of if you don't like the playgroup, find another.  Or if you like some people and not others (personality, parenting philosophies, whatever the reason) that it was ok to go and make a new playgroup.  It was about making connections. 
   There were a few ladies in my neighborhood who started a play group.  I went to one - nice group but most of them had 2 or 3 kids and not newborns.  It can make a difference.  Eventually, from that group, came a smaller group, my group.  There are 4 of us - 3 moms and 1 dad.  We had a couple of others who would come to things but we were the consistent ones.
    I am so grateful for that playgroup.  I learned so much about how to parent.  I didn't feel alone and when my kids were crazy, it was ok because the other kids were crazy too! They were (still are) my support group.  I am a better parent because of them. 
    Support groups are incredibly important.  BUT only if you can access them.  When we were at Moss, we met every Monday with the counselor.  She knew I was there on Mondays and she made a point of seeing the both of us - marriage counseling if you will since we now had this "third" person.  She also met with Jarrad individually and Jarrad went to group.
   Since we have been home, I have gone to 2 group sessions and I think Jarrad has been to 4, perhaps.  Not good.  Because as supportive as friends and family are  (I am beating a dead horse but we have some AWESOME friends and family), when you talk about the stuff that goes along with paralysis, there is a level to which they can't go.  We miss going to group simply because we can't get there.  1.  It is about 45 min away and 2.  It is at 1:30.  I can't go because Jarrad needs to work and he can't go because he can't drive yet (and needs to work).  I can't drive him because I need to be home for the bus.
   So we miss out on the personal connection. 
   Enter the INTERNET.  It is a great resource.  I found a couple of blogs that I follow that have become my "group" and recently discovered a blog written by a (semi) local guy who is going through a lot of the stuff that Jarrad is - like HO. 
    This latest blog was a great discovery since this guy's situation is quite similar to Jarrad's.  It also kind of inspired me to write more specifics about Jarrad's injury and what we do about it. 
    Expressing emotions are helpful - I get that from the female written blogs I read - they can help you feel not so alone but I don't want to forget the practical aspect of why I am keeping this blog - to maybe make someone else's journey a bit easier. 

ARGH!

   I just want one thing to go smoothly from beginning to end - JUST ONE! 
   Ok, nothing to do with the chair, well, sort of, but not bad just pray for us and hopefully, I will be able to tell you about it soon. 
   I really want to post something positive - not just a positive spin! 
   Ok, done with screaming frustration. 



   For now . . . .

Lovely weekend

   This weekend has been lovely.  Sometimes you just need a bit of loveliness in your life - it gives life a glow and you a rest.  Saturday, Jarrad had a brew day with some friends and I walked Emma to a friend's house for a play date.  Friend's mom also happens to be my friend so while the girls played, we sat on the front porch, drank coffee and chatted.  Nice, nice way to start the weekend.  I am all about taking a day of rest which I define as a day to do something that makes you happy, feel relaxed or have a sense of accomplishment.  So, yeah!  Good start.
   I came home to see my son hanging out with the guys.  I took a minute to absorb the scene in front of me.  4 men, all intelligent, with integrity, compassion and kindness.  As I watched, I saw them talk to my son, let him handle a screw driver, touch his head, call him buddy. None of which they had to do.  And I thought I want this - every day, for my son.  I want him to be surrounded by men that he should grow up to be like.  I feel lucky.  And sad because it should be that way for every boy.  I am so happy my boy has it.  He had fun.  When it started to get a little hectic, I called him in to play with me but he had to keep checking on "the guys".
    "Hey Guys!  Whatcha doing?"
    "Hey Guys!  Do you need help?"
    "Hey Guys!  Do you want a fruit pop?"
    They are cool guys.
    Later, as the kids were getting ready for bed, Emma, who has had a very wiggly tooth asked me to pull it out.  1 . . . 2 . . . 3. . .  and out it came.  I know that there was a bit of pain but she did really well.  Into the Tooth Fairy pillow it went and there it stayed until 7:30 the next morning when she woke up and checked to see what the tooth fairy left her.

    Mommy fail.
    ARGH!
   "Mommy, why didn't the Tooth Fairy take my tooth?"
   "I don't know, Honey, let's try again tonight.  Maybe she was on vacation because it is the weekend."
    Crisis averted.
    UNTIL . . .
    "Mommy!  My tooth fell down the drain!"
   "How did that happen?"
   "I was washing it because I thought it might be too dirty and that was why the Tooth Fairy didn't come and it slipped."
    Comfort.  Comfort.  Finally happy and watching cartoons.
   Meanwhile, the Tooth Fairy has snuck in,  used her magic to fish out the errant tooth and left a note explaining that there had been a record number of teeth lost the day before (Junior Hockey League Tournament) and her assistant was had been sick with a tooth ache (of all things!) and so the Tooth Fairy had hoped that Emma had slept in but realized she was too late when she saw Emma washing her tooth.  But she had pulled it from the drain because Emma has very good teeth.
    Happy girl.
   Mommy save!
   Whoo hoo!
   Finally, to make this a truly lovely weekend. . . 
  We have been going to Sunday School.  I made the comment that I liked it because I got to sit next to Jarrad as opposed to church where I sit in the pew in front of him.  We sit in the back because, well, it was either there or the front and the front was too hard - special music and guests usually sat there so we would sometimes be with out a seat and Jarrad had to sit sideways and crane his neck.  Sitting in the back is so much better.
   Anyway, we sit in the back.  When the Sunday school teacher heard my comment, she was stricken.  It was not something she had thought about and she likes to sit next to her husband and why didn't we ever say anything and I should take that chair.  I smiled, shrugged and didn't take the chair.  She did.  Put it right in our "pew" and told the ushers it was to be there every Sunday for us.
     One of the 80 something ushers told me that as long as he was there, that chair would be there and I was not to put it away, he would take care of it.
    It was a little thing.  I missed sitting next to Jarrad. 
No one else had thought of it because, well, why should they?  But when it was brought to their attention, they almost seemed ashamed that they hadn't.
   I really liked sitting next to Jarrad in church.
   So nice.
  And to add the icing on the cake - went to lunch and made some new friends.  They were great with our kids - didn't care that they were rammy and played with them.  Talked to them.  We laughed and spent 2 hours in the restaurant.  Can you believe it?
    Happy, happy weekend!