OPD Syndrome         
Family Resource Network
doing fantastic!  He is in school full time, loves it and is keeping up energy-wise with the school day,
homework and all the other stuff that's going on.  We are returning to Boston on April 4 for Andrew to
have his expansion on April 6 and we'll start a new web log then to keep everyone updated.  The new web log
send me an email if you want the directions on how to get to his page.  Andrew is excited to go back so I
think he had too much fun last time we were there!  Thanks to everyone that has been keeping up with
Andrew's progress and hopefully we'll see you at the new site!

Friday, February 10, 2006: Andrew is still doing great!  We went for a checkup last week and his xray looks
wonderful - nothing out of place.  His left rod is sticking out so you can see the bottom through his skin
and that is kind of tender so we keep that well padded!  He is walking with only a small limp and getting
better every day.  He is going to start full school days on Monday and he is looking forward to it - they
have all the fun stuff in the afternoon!

We met Jim and Pat last week and we saw Dave and Mary Jo yesterday and Andrew worked on them to open
the campground early.  We'll have to at least get up there to visit even if its too cold to stay.  Not much
more to add which is a good thing I guess.  Andrew says hi to everyone!

Monday, January 9, 2006: Today was Andrew's first day back at school.  He went from 8:00 to 10:30 a.m.  
This is a picture of him today that we took after we got back home.  He survived!  Next week he wants to
go longer, maybe until after lunch until he gets up to all day.  Not too much else going on except - homework!

Saturday, January 7, 2006: Andrew is going back to school next week!  He is a little nervous about it but
was better when we went to visit his classroom and found his desk.  He will probably start out with half
days to begin with but it will be a big adjustment for him anyway.  

He has decided and been accepted for his Make-A-Wish wish - the nurses on 10 South will not be surprised
that he wants to meet Michael J. Fox.  We've been watching "Back to the Future" trilogy (we finally went
out and bought it) since he was in the hospital and it is still all he talks about.  I sure hope Michael J. Fox
wants to talk about that particular time in his life a lot!  We don't have any idea when this would happen
since I am sure MJF is quite busy but Andrew doesn't care when it is - he still can't believe that he
actually gets to meet him.  

We are scheduled for April for Andrew's expansion surgery in Boston and right after that, Andrew is sure
that Dave and Mary Jo will open up the campground! :)

Saturday, December 24, 2005: We want to take this time to wish everyone a Merry Christmas and thank
everyone that has been kind enough to read this web page and all that have kept Andrew in their thoughts
and prayers.  It is only because of all of your help that we are where we are.  We would especially like to
thank the doctors at Children's Hospital in Boston, the fantastic staff on 10 South, all of our friends on
the KOA campground and our family and friends that took the time to come all the way to Boston to visit
Andrew.  We appreciate every visit and phone call that was made, every card, note or present that you sent
and all of the other little things (haircuts, Andrew-sitting, dinner, McDonald's and LISTENING) that you
all did for us while Andrew and I were in Boston.  THANK YOU AND WE HOPE YOU ALL HAVE A

Sunday, December 4, 2005: Andrew is walking all over now.  He got his walker on Monday and has already
pretty much abandoned his wheelchair.  We went to the doctor and Andrew has grown 4 and 1/2 inches since
last April!  His xray looked great with everything attached and lined up where its supposed to be.  Right
now we are planning on Andrew going a couple of days to school for a few hours right before Christmas
break.  He will be in his wheelchair for that for awhile because he would get too tired just walking to
school from the bus.  We'll see how he does this week.  The Make a Wish organization approved Andrew to
have a wish.  He's working now at trying to figure out what he'd like it to be.  It's a pretty big decision.

Friday, November 18, 2005: Andrew has begun to walk.  He started with some exercises in his wheelchair
and can now walk with help.  We will be getting him a walker next week that he will probably use for a few
weeks.  We are going to Gillette next week to have a follow up appointment and will get an xray at that
time.  Otherwise, Andrew is doing well and will probably go back to school either right before or right
after Christmas break!  I think he'll be happy to get back into a more normal routine.  His expansion is
already scheduled for the first week in April but that should be very easy compared to everything he's gone
through so far. Oh, and he is taller!

Friday, November 4, 2005: I think Andrew might finally be bored with T.V.!  We are nearing the end of the
"down time" and everyone is ready for Andrew to try to get up.  We all want to see if he's taller!  He's not
really having any pain and can move in his wheelchair without any problem.  Halloween was a little tough for
him since all he could really do was give out candy.  Even that wasn't too exciting because we only had
about a dozen kids.  We did have a lot of candy left over though so we didn't have to send Scott out trick
or treating disguised as a kid!

Sunday, October 23, 2005: Slowly, Andrew is getting better and better.  He started by being able to roll
himself in the hospital and lift his head off the pillow a little.  He can now sit up away from the back of
the wheelchair without help so his upper body is getting stronger.  His appetite is much better since he got
home too and he looks like he is gaining weight but we won't know for sure until he can stand and get
weighed.  AND...yesterday, he watched a funny movie and didn't have to turn it off in the middle because it
hurt from laughing too hard!  Progress!

Tuesday, October 18, 2005: Our trip home went very well.  We took an ambulance to the airport and the
two attendants were great.  They helped us into the airport and stayed until after we checked in.  We were
able to board early and the airline seat was really pretty comfortable for Andrew with some pillows.  The
only trouble was that the wheelchair didn't fit very easily into the trunk!  Andrew is happy to be home and
is eating much better now.  First choice today was macaroni and cheese!

Sunday, October 16, 2005: WE ARE GOING HOME TOMORROW! What more can we say?

Thursday, October 13, 2005: We have slowly been raising Andrew's chair height toward an upright sitting
position.  He seems to be tolerating it fine and sat in the chair for most of yesterday.  The good news is
that WE GET TO COME HOME SOON!  We will be trying to work out all the details in the next few
days.  Andrew isn't sure  if he's happy to go home or sad to leave  all his friends here.  Everyone has been
so nice to him here, I'm sure he's worried that when he gets home, his family may not understand just how
important he is!

Sunday, October 9, 2005: Sunday afternoon and still all is well.  Andrew's been sitting up most of the day
and seems fine.  We are actually getting back to being bored!  One last week of bed rest then he can begin
standing and walking.  I think that will help in getting his appetite back up and get his system back to
normal.  The same hospital food over and over doesn't help so I'm sure he'll eat more once we get home.  
For the last few days, Andrew has been bothered more by the actual being in bed than by any back pain.  We
have to move him because he gets sore on one side or the other but not because of anything else.  Slowly,
things are getting better!

Friday, October 7, 2005: Andrew got up in a chair last night for the first time in three weeks.  He really
didn’t want to do it and we couldn’t think of any other way to convince him so we just told him that Dr.
Emans wrote in the orders that Andrew was to get up. (If nothing else works, blame it on the doctor!)  
Once he got up, he was quite comfortable and stayed up for about an hour and a half.  We will get up again
today for awhile.  Just by being in the chair, he looks better and I’m sure, eventually, will feel better.  He
also ate three pieces of pizza last night so his appetite, at least for pizza, is improving!  School is going
well.  An hour a day is Andrew’s kind of school!

Tuesday, October 4, 2005: Today we went outside, bed and all.  It was a gorgeous fall day and, even though
Andrew resisted at first, we went out to the hospital garden.  Andrew was so-so about it but I loved it.  
We are still constantly trying to get him to eat.  He just doesn’t have much of an appetite yet.  Andrew
also had his bandage changed.  Now he only has three little bandages.  Surprisingly, his incisions look like
they are almost healed – not like he just had two major spine surgeries.  Since he had a bandage and foam
covering his whole back, he wasn’t too happy about anyone changing it but we got through it.  I tried to
convince him that changing it was a good thing and it meant he was getting better but that didn’t go over
very well either.  Someday, he’ll thank me for all of this…right?

Saturday, October 1, 2005: Andrew continues to improve.  Obviously, he isn't running up and down the halls
yet but he is able to tolerate sitting up for an hour or two.  His appetite is returning slowly but I can tell
he has lost some weight.  We have to start fattening him up again!  He had his first pizza today since his
first surgery almost three weeks ago.

The haircut, I guess, wasn't as good as I thought.  One of the nurses brought in a hairdresser to cut
Andrew's hair!  It was very nice of her but I think she felt sorry for Andrew!

Aunt Mary K. came to see us again this week.  I got to get out to get MY hair cut.

Monday, September 26, 2005: O.K.  So I think we are doing awesome again!  Andrew is pretty much pain
free all day with the pain medication.  He’s back to eating, – French fries and Spagettio’s for lunch -
drinking and he’s back to doing all the other stuff he’s supposed to!  We had a little bit of a scare
yesterday though.  Andrew was in a lot of pain from his shoulder and we all thought he had broken something
again.  But a quick xray showed everything is still in the right place.  

As far as normal, everyday stuff goes, Andrew got a little haircut today from me.  His hair has grown so
much that it was in his eyes and bothering him and washing it while he is laying in the hospital bed is lots of
fun!  Usually none of the kids lets me near their hair but I’m the only one here to do it so I think that’s
the only reason he agreed!  

The bad news is we probably won’t be able to go back to the campground this year before it closes.  We’ll
have to figure out another way to see everyone so we don’t have to wait all winter!  We finally got all of
our mail – it had been lost in the hospital since we went to surgery and changed rooms so it was nice to
read all the cards we got.  Now that he is feeling better, he might be up to answering some of them pretty
soon.  Or at least, telling his personal secretary what to write!

Saturday, September 24, 2005: Today was a much better day.  We resolved most of Andrew's pain
problems.  He is having intense spasms under his shoulder blades but not too much actual pain from the
incisions.  Most of the day was spent watching T.V.  (Very educational programs: Spongebob, Fairly Odd
Parents, etc.)  Andrew sleeps a lot from the medication and still is depending on some oxygen but each day
is better than the last one.  The xray we had yesterday showed everything in the right place - it should be -
he hasn't really moved that much since the surgery!

Thursday, September 22, 2005: Well, Andrew has had quite a setback.  Tuesday morning he had an xray to
make sure everything was straight and attached so we could go home.  Unfortunately, the xray showed that
the top of both of his implants had broken through the two ribs and were not attached to anything.  
Tuesday evening, Andrew had surgery again to replace the hardware and attach it to new ribs.  The plan now
is for Andrew to stay on bed rest for about 6 weeks at no more than a 45 degree angle to allow the ribs to
heal and the hardware to really be attached firmly to the ribs and the pelvis.  I’m not sure how this is all
going to work yet with trying to get home but I’m sure we’ll get home at some point. This morning, Andrew
is pretty comfortable after being miserable most of yesterday with pain issues.  Of course, he is quite
tired of this whole ordeal!

Sunday, September 18, 2005: Andrew is doing awesome!  Today, he walked around his room and sat up in his
chair for most of the afternoon.  He is off of some of his pain medication and off oxygen during the
daytime but still uses a little at night.  He's in much better spirits and not saying "ow" all the time.  He is
a little uncomfortable from the tape they put over his entire back (and I am not looking forward to them
REMOVING it) but no more spasms so far today.  A little mac & cheese, chocolate milkshake and pudding
were on the menu today - not much of an appetite but any eating is good.  Yesterday, Andrew's belly was
like a balloon from all the drugs and very little movement through his system.  They thought he might have a
problem due to the stretching of his abdomen.  They were talking about putting a tube down into his
stomach to drain it and them putting him on I.V. nutrition for awhile.  It didn't sound good!  They sent him
for an xray though and it showed that all it was was gas and it just had to work its way through.  It has
pretty much resolved and his system is almost back to normal.  Now we just have to work on the rest of his
body.  He'll probably be better at walking tomorrow - I'll tell him he has to walk to the gameroom!

Friday, September 16, 2005: We moved back to 10 South yesterday.  Andrew was in pain for most of the day
though.  Today was much better.  He sat up for about three hours and his pain was manageable.  Tomorrow
we are hoping to start walking to get everything moving again.

Wednesday, September 14, 2005: It's Andrew's birthday today and although he doesn't feel much like it, he
has a lot to celebrate!  We ended up going first yesterday and were out of surgery by 12:30.  Andrew was
extubated in the O.R. which we were not expecting at all!  Dr. Emans also took off Andrew's halo.  He is
doing great.  He is still on morphine for the pain, of course, but he is able to hold a conversation and we can
move him without too much discomfort.  Getting up in a chair is on the agenda this afternoon.  I wish I
could put the xray up - his curve is greatly improved and his ribs are in the right place!  We are hoping to
go back to 10 South possibly by tomorrow and right now, that is Andrew's main motivation.

Monday, September 12, 2005: The night before surgery!  We can't believe this day is finally here.  Right
now, we are scheduled to be the second case so we won't go until late morning.  The first case, however, is
a patient that had a fever over the weekend so that surgery may be cancelled and we would be moved up.  If
we are the first, surgery is scheduled for 7:30 a.m. so they will come for Andrew about 6:30.  We'll be in
ICU for at least the first night and Dr. Emans said they would probably keep him intubated overnight.  
Andrew will have two rods inserted, one on each side with a small incision at the top and bottom of his back
for each one.  So...ready or not I guess.  We'll let everyone know after surgery tomorrow.  Keep us in your

Sunday, September 11, 2005: Uncle Tom and Dad finally got here yesterday.  Uncle Tom could only stay one
day but Dad's staying for ten days.  Not much happening on the weekends so we've been playing lots of
Connect Four and putting together jigsaw puzzles.  There are new pictures on the picture pages from the
birthday party the nurses gave Andrew.  His birthday isn't until the 14th but with surgery the 13th, he may
not feel much like partying.  The doctor said Andrew might still have his halo for a few days after surgery
just to make sure everything stays where it should.  He said it doesn't take much to take it off and he can
do that in his room.  Andrew wasn't too sure about that though!

Thursday, September 8, 2005: Jason Veritek came to visit Andrew! In case you don't know, Jason is a
catcher for the Red Sox!  Here is a picture of them together.  We had a little birthday pizza party with
Sandy before she left.  School starts today - yep, Andrew is REAL excited about that! :(  

Wednesday, September 7, 2005: One week to surgery!  Andrew's birthday is the day after surgery so the
nurses are giving him a birthday party this Friday the 9th.  We just finished the invitations.  Sandy from
the campground came to visit and brought all kinds of things from the campground.  When the nurses found
out we had a ton of candy, we had lots of visitors to our room!  Dr. Emans came to see Andrew today after
being gone for ten days.  He said Andrew looks much straighter when he sits up.  He said that the xray did
show a change but not quite as much as the first one.  Andrew's pin hole we were worried about is
completely cleared up so we don't have to worry about moving the pin.  That's about it for the news for
now.  This weekend will be exciting - Uncle Tom is coming to visit and Dad comes on Saturday!

Monday, August 29, 2005: Finally, an update!  We had a busy weekend - for us anyway!  Andrew's cousins and
Aunt came to visit from Minnesota.  I got to go to the Museum of Art while Andrew got to visit his
cousins.  We got to look at Andrew's Xray and the progress Andrew's traction is making is pretty
impressive.  I can see why we needed to do the traction first.  Correcting that much in one surgery would
not have been good for Andrew.  Andrew's pin site is looking much better today which is a good thing
because the next step would have been to remove that pin and move it and put it back in.  Dr. Emans said
that if it flared up again, we still may have to consider that.  Meanwhile, Andrew's been tearing up the
hallways with the remote control car that we borrowed from the playroom.  Everywhere we go, people say,
"Hey, didn't I see you with that car on the 5th floor?"

Tuesday, August 23, 2005: Hey everyone - Andrew is still doing well.  He is up to 25 pounds traction and
the doctors feel that this is a good weight to stop at.  Andrew only weighs 51 pounds so it's half his
weight!  Kristen went home on Saturday and Michael arrived.  Mary K. was here for Andrew's first week
which helped a lot.  It's great to have others around to entertain and distract.  There's still 3 weeks until
the surgery so we are half way there.  We have Andrew's room all decked out with pictures and balloons.  
It doesn't look much like a hospital room anymore!

Wednesday, August 18, 2005: We continue to hang out here on 10 South.  Andrew is up to 21 pounds today.  
He also had another xray today but we haven't heard any results of that yet.  We got to see his xray from
last week and you can clearly see that the angle has changed.  Unfortunately, Andrew got an infection in
one of his pin sites so he started an antibiotic.  Hopefully, that will clear up quickly.  He's getting pretty
good at his game boy, Connect 4 and Outburst, Jr. and we're watching a lot of movies!  The nurses and Child
Life Specialists are very nice and come to visit a lot and come up with creative ways for Andrew to spend
some time.  There's just SO much of it!  But...we'd rather be bored than worried about something!

Friday, August 12, 2005: Today, Dr. Emans said that he looked at Andrew's Xray from yesterday and it
already looks like his back is getting straighter!  We will be having weekly xrays now and it will be fun to
watch his progress.  The nurse today taking care of Andrew said that his lungs even sound better today!  
Andrew was pretty tired this morning - its been a big week - but he is now only on Tylenol for pain and is
actually pretty comfortable.

Wednesday, August 10, 2005:  We are up to 17 lbs. today, which is amazing!  I’ve picked up the weights and
17 pounds is heavy!  Yesterday, we went to a magic show in the Patient Entertainment Area.  His grand
finale was making a rabbit appear and everyone was surprised!

Saturday, 8/6/05: Today we moved to a regular floor.  It is one of the remodeled parts of the hospital so
everything is new.  Today we went up to 10 lbs. on Andrew’s traction.  Andrew got a game boy from his
friends at the campground, which he loves.  He plays it in between other stuff we do and is getting pretty

Friday, 8/5/05: Today we watched a lot of T.V.  The doctors put 5 lbs. of traction weight on his halo.  
Andrew had a bit of a headache but they gave him some good pain medication!

Thursday, 8/4/05: Surgery day.  Pre-op at 6:00 where we got changed and then waited in the waiting room.  
We went down with a whole group and then they put us in separate holding areas.  They put us in the “Harry
Potter” area.  The anesthesiologist gave Andrew a sedative to help him relax and he was sleeping when they
wheeled him in the O.R.  They let mom go into the O.R. but Andrew didn’t really wake up.  Surgery took
about 3 hours to put the halo on.

Wednesday, 8/3/05: Today was pre-op.  It was a very busy day.  We had xrays, a ct scan and a quick visit
with Dr. Emans.  We didn’t get to eat until 3:00.  We finished with all the appointments at 4:00 and were
told to be back at 6:00 am for surgery.

Sunday, July 24, 2005: Everything is finally set for our trip to Boston! We leave on August 2nd. On the
3rd, Andrew will have his pre-op appointment and will be admitted to Boston Children's Hospital on the 4th.
We will be updating this page throughout Andrew's stay to let everyone know how we are progressing.

Thursday, June 2, 2005:     We have dates for Andrew's surgery. Andrew will receive his halo brace on
August 4th. He will have to stay in the hospital and wear the halo for six weeks and then he will have the
titanium rib operation performed on September 13th, 2005. It will end up being a short summer for us but
hopefully, this will make future summers much more enjoyable!

Sunday, April 17, 2005:     We went to Boston last week to get a second evaluation and got kind of a shock.
Andrew was nervous for his first plane ride but unfortunately, it was very bumpy - he wasn't totally
thrilled! The appointments went well. Dr. Emans wants Andrew to have a halo brace with traction for six
weeks before they do the surgery and he has to be in the hospital for that time. Andrew burst into tears
when he heard that! The good thing was that there was an 11 yr. old girl that was in the hospital on her 4th
week. Andrew got to go see her and talk to her. Surprisingly, she said it doesn't hurt at all. The reason he
has to be in the hospital is that they would have him hooked up to traction the whole time. They have
therapy and a tutor and a game room there. They tentatively said Sept. or Oct. for the actual surgery, so
the halo would be put on in July/August. ALL of this is tentative but the doctor thinks they can get a much
better correction if they do the halo first. It certainly will be interesting.

Saturday, January 22, 2005:   Received letter from San Antonio informing us that surgeries will be delayed
indefinitely due to their anesthesia problems and the fact that one of the doctors left to go to Iraq. We
decided after much deliberation to try to go to Boston to see Dr. Emans who does the Titanium Rib
surgeries there. We contacted him and he said he would be happy to review Andrew's records. We asked San
Antonio to send all films and xrays and Dr. Emans will review them hopefully this next week. All this
waiting is very frustrating. :(

October 5, 2004:    Andrew is accepted into the Titanium Rib Program!

August 18, 2004:    Evaluation in San Antonio.  The first day we were there all day with xrays, pulmonary
function tests, ct scans.  The next day we met with the doctors - the pulmonologist, Dr. Smith and finally,
Dr. Campbell.  Dr. Smith answered all of our questions and talked with Andrew quite awhile to make sure he
understood the commitment it would take if he was accepted into the program.  Andrew listened to him and
talked to him and then finally said, "We can just stay and you can do it now if you want."

May 13, 2004:   We have been accepted for an evaluation for the Titanium Rib Project in San Antonio Texas
sometime in August.  Andrew will have a series of tests over two days to see if he is a candidate for the
Titanium Rib.

April 6, 2004:   Began researching other alternatives to simply fusing Andrew's spine posteriorly in place.  

April 5, 2004:    Went to see Andrew's orthopedic surgeon.  Told us that Andrew would need the surgery
that we had discussed at earlier visit.  He had told us that he would do an anterior and posteri
or spinal
fusion so that he could get some correction to help Andrew's posture and lung function.  At this visit,
however, he said that he changed his mind and would just do a posterior fusion with very little correction.  
He told us that if we did an did an anterior approach, Andrew could lose a lot of lung function for quite
awhile.  We asked about the crankshaft phenomenon and he told us that "yes, his spine probably will twist
but hopefully it won't be too bad."  This was very disappointing news as we knew that if Andrew's spine
began to twist he would have very little room and it could begin to seriously crowd his lungs and heart.  To
complicate the situation, he said he wanted to put Andrew to sleep at the Children's Hospital then move him
over to the main hospital next door and do the surgery and then move him back to Children's to recuperate.
He said he knew the personnel better and he would be more comfortable there. With what we knew of
hospitals, we knew this was probably not as easy as he made it seem.  We left with the surgeon telling us
that his secretary would set it all up and call us.