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JUNE 04 |
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DECEMBER 2003
Not much else to report.
Arrived in plenty of time, got to the
floor about
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A JOB
WELL DONE !!!! |
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Ok when is it going to be ENOUGH? Ian had
an appt. with orthopedics today. Seems when he had the MRI done back on 10/22
they found "something" on his left femur (thigh) so we were given
this appointment to check it out.
I let both boys skip school today
(Christmas vacation starts tomorrow anyway) so off to
Ok we arrive at the office & check in.
Boy this is a BUSY place. Height, Weight the usual.
But man has he put on some weight. He was 66.5 on 11/26 now he is 74.1 a gain
of 4.6lbs in 27 days. Dr Sundell won’t be too thrilled with that
tomorrow.
We meet Dr K. & he and I talk while
Ian is in the bathroom. On 1st assumption
he is thinking the spot on the MRI has been caused by the steroids. Since those
can contribute to Perthes
Disease. Wonderful, you guys are just FULL of .GOOD NEWS. I have
already done some research into this and it’s not a good thing. I am getting a sinking feeling in the pit of my stomach
again.
When I tell him this was found BEFORE
he started the Steroids he says he will go check the MRI & be right back. (excuse me but shouldn’t he have looked at that BEFORE he came into
see us???) Upon his return, He says it in the middle of his thigh bone
not at the head when he originally thought. (See diagram note I was NOT
shown this by the orthopedic Dr. This was given to me
by Dr B that I met on
Ian comes back from the bathroom and Dr K.
starts to talk to him. He asks if he has any pain. Ian says no, but when
tested, (he has him lie down and lift each leg one at a time and pushes on the
calf area) he indicates there is SOME pain and it is RIGHT where the spot
showed on the MRI. Dr K. explains from the least it could be would be a cyst, the worst a TUMOR.
Ok ENOUGH ALREADY!!!!!. When is this
nightmare going to end. They tell us we are going to
get better and things just keep getting worse. Now we need ANOTHER MRI w/ an
IV. (That didn't go over well. Ian has another breakdown about the IV. I
thought we had this taken care of, after the visits with Rachel, but guess not)
A CT Scan and then a follow up w/ Dr K.
And get this..........CRUTCHES.
Dr K is worried about it being a weak spot
in the bone and it would have a possibility of breaking if put under stress. As you can see in the cross section view that only 1/3rd
of the bone is still healthy-the grey part and 2/3rd is affected- the bright white part. Gee I guess running on a treadmill at PT is a
bad idea.
I ask Dr K to tell Keith what his thoughts
are while I go to make appointments. I head out but Keith calls me back, Ian
needs to come back to the exam room so they can fit him for the crutches. I
lose it out in the hallway as they do this. I want to know when is this going
to be enough. How does a 9 year old deal with all of this. My head knows there
are other kids LOTS worse off that Ian but they are not MY child. My heart is
breaking because I can’t fix it for him and I couldn’t keep him
safe from this.
I get to the check out desk and deal with Ms Personality, NOT! She tells me I need to go to the MRI department and make an appointment to get that done and then come back and schedule the appointment with Dr K. I tell her that in Rheumatology they make all the appointments FOR me. “Not MRI, they make there own. She snips at me. Unless you want to come back on 2 different days, 1 for the MRI and 1 for the Dr.” “OK fine but WHERE is MRI ??” “Down that hall to the left” and she is off to another area. Geez I am a wreck and compassion this woman didn’t have. I don’t know my way around the hospital totally
(I know way more
than I want to NOW) and she was NO HELP at ALL.
Keith and Ian make it out to the waiting
area and we ALL head off to find MRI. It’s slow going with crutches. We
get there and the 1st available appointment is
Ok now it’s BACK to orthopedics and
Ms Personality. I tell Keith to go to the desk, for fear I will lose it on Ms
Personality, but he gets someone else and they are very helpful. We get the CT
scan scheduled for early morning on
Now my question here is Why
did we have to wait a month to have an appointment with this Dr K if when we
got here he had not even LOOKED at the MRI on file, and then took 2 minutes
with Ian and then needs more tests. Why couldn’t he have just looked at
the MRI a month ago and order the tests so that he could have had half a clue
the day we were in to see him. To me this visit was a complete waste of time.
Ok we finally get to go home, but we are
all in the dumps from this visit, I hope the one tomorrow goes better.
On the way home we stop at the local mall to see Santa. There was no line amazingly, and the boys walk right up to Santa and into his lap.
And we had a great photo taken of the boys
with Santa. (You’d never know he parked the new crutches off to the side
of this photo)
Ian got around the mall fine on the
crutches. We did spoil the kids and yep bought them yet, ANOTHER toy.
Figures Christmas is 2 days away, and they
already have WAAAYYYY to much
But after all the gloom from this visit they both needed a pick me
up. And I even bought more Xmas gifts, great even more stuff to wrap.
We get home and the bushes by our front
door are FULL of boxes. Gee mom has been
shopping again. One is a Christmas present from Keith's Dad. A
quesadilla maker. Yum. We decide that this
should be supper so Keith heads back out to pick up 1 more Xmas gift, and the
stuff to make quesadillas. They were GREAT. Thanks
DAD.
After dinner Keith & I have a wrapping
party. The last few months have been so nutz, that the buying was easy. The wrapping, not a chance.
Around
And I tell him it
is ok to feel this way, if he feels the need to cry. Please do, it won’t
do him any good if he keeps it all bottled up inside.
WEDENSDAY
Ok out
of the house early,
The traffic was NOTHING! We arrived at the
parking garage @
Well since we forgot the crutches, we grab
a wheel chair and have Ian ride around. This is when we discover just how
un-handicap friendly the Galleria actually is. We manage fine, but we had to
stay on the lower level, since no one ever came to help us with the elevator.
We hang out in the Children’s Lobby
for a while, at the Big Screen TV area. We head up to the 6th floor
around
We get the Height, Weight, B/P etc. He is still
4’7” but now he weighs 73.2 lbs an overall gain of 10.7 lbs since
this all started. We head to the exam room and a Nurse B does all the
preliminary stuff. She asks about Ian’s current meds and I have HIM
tell her, since that was his homework from Dr S2. he
passes with flying colors. Ok she is done and says the Dr will be in shortly.
Next we get Dr B. he is one of the fellows
on staff in the Rheumatology Department. (This means he is a full fledged
Pediatrician, but now is getting his specialization in Rheumatology and
Immunology.) He very friendly, and funny. Ian unwraps the plate full of cookies that we have brought in to
share. (his dad goes on a baking frenzy every Xmas. We
have at least 6 dozen of at least 12 different kinds of cookies at our house)
Dr B thinks this is great and enjoys the peanut butter cookies.
We go over the SAME things that we just
told Nurse Be. (silly question..don’t they ever talk to each other???) Again
Ian recites his meds list and when he says oral prednisone, Dr B is puzzled, it
is usually done by shots, when we start to talk about shots Ian again
dissolves, and I say “this is probably why they went with oral” He
asks how things are going and I tell him GREAT 
up until yesterday.
And then relate the story of the visit to orthopedics. This is when he offers
to SHOW me the MRI and what every one is so concern about. Mind you this
“thing” was an incidental finding, something they found by accident
while checking him out for the Dermatomyositis. And he even gave me prints of
the MRI’s
This
is the 2nd
view of the MRI the white dot in his left leg is the problem. Dr B thinks that as
Ian’s mom I have a right to SEE this thing. At least he seems to know
what’s going on even tho this is the first time he has seen Ian. I wish
Dr K from yesterday had been as interested.
He does the usual strength tests and we
talk just a bit I
show him the Spiderman photos and he is really impressed with Ian’s
progress. Ok next comes Dr Susan and Dr S2 in to see
Ian. This turns into a GOOD visit. This one is filled with laughing, good jobs
etc. Way better than yesterday.
Dr B shares the Spiderman photos with Dr
S2 and I get the other copies out that I made. There is one for everyone. Dr S2
wants to know if he can use them in a talk he has to give. Please do. I tell him. I also give them the
business cards I have made to direct people to this web page. They think that
this is great too.
Down to business, Dr S2 wants to start
lowering Ian’s dosage of Prednisone…yahoo. But with Ian’s
phobia about needles still enforce he says he will opt to go with the 2nd
best treatment, since the 1st best involves a SHOT of Methotrexate
once a week administered by Mom or Dad. And just the mention of the needles has
Ian in tears again. He again wants us to work on that with a therapist. I will
have to find someone local, the trips to
New med on the list is Cyclosporine this is to be taken for about a week before
we start to lower the Prednisone dosage. He has also thought of skipping the
blood work but decided we needed a baseline for the new med. I tell him about
the visit to Orthopedics and the crutches and he says that we won’t be
able to control Ian’s weight if he is not moving around. “Ian has been getting around with this thing this long
and been fine, I think he will be fine a few more weeks, just be a bit more
careful with it.” This does
wonders for Ian’s mood, to think he won’t have to sit still at the
Xmas eve party at cousin’s house tonight.
He tells Ian he won’t force him to
have the shots YET! But there may come a time to we may HAVE go that route and
Ian should prepare for it. We want to make you well as quickly as possible and
2nd best may not be good enough.
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PREDNISONE |
ZANTEC |
FOLIC ACID |
METHOTREXATE |
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25 mg Twice Daily |
75 mg Twice Daily |
1mg M-F @ dinner |
12.5
mg Twice Daily Saturday ONLY |
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ADJUSTED |
MEDS |
EFFECTIVE |
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CYCLOSPORINE |
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50 mg/day/AM |
75 mg/day/AM |
1 mg M-F/AM |
12.5
mg Twice Daily Saturday ONLY |
Twice/daily |
We head for home in a MUCH better
mood than yesterday. We stop to get the new med, but they have none in stock,
they wil have it for me Friday. This is fine and we
head off for a dinner out. We all have a meal of steak and potatos.
Mom and Dad just can’t deal with another round of McDonalds.
Then it is home for the old
folks to nap and then go to Auntie’s for Christmas Eve. This was a good
time, lots of talking, playing and fun for everyone. Dylan starts to fade
around
The boys settle in about
The
boys are up around
Keith and I get up and the fun begins, the tearing open of gifts and on to the next one. Ahhh some normalcy, I am getting to be like Ian in the fact that if I don’t think about all that is going on, it doesn’t seem as bad.
Just
another typical day at our house, (since we ditched the crutches and just have
Ian be careful) Dad has to work until
They
have a friend over and are off to play with the new Game Cube in the family
room. I just busy myself with looking for a new car. These trips to
Dad
arrives home to find me asleep on the couch, the boys are still up and they
have more Chinese food with Dad and wake me at
I sure hope
2004 turns out better than the end of
2003……………………………………………..
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JUNE 04 |
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