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JUNE 04 |
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HAPPY NEW YEAR
JANUARY 2005
Ohhh boy Mom got manditoried
(this means she has NO choice) to work this holiday too, We had so much fun fun
last night since I had to go to bed
early to be in work at 5:00 am.
DR S 2:00 PM RHEUMETOLOGY IN
Today is
the kids 1st day back to school, and Ian was hoping for another day
off since he has a doctors appointment today, but too
bad it’s not until
So dad
puts the kids on the buses for school and will pick each of them up around
The boys
have had no lunch but they split Ian’s in the back seat while we head in,
at least Ian always takes his lunch and we have something to work with.
We arrive
around
We head
up to the appointment and are taken right in. His vitals look good, tho he has
a temp of 100.0. He has grown a ½ inch and LOST 5.3 lbs in 3
months. This last one concerns me.
He has
been having a tough time lately, I think he has reached the wall so to speak, he complains about taking his medicine and has had a
few meltdowns in the last dew weeks, along with more frequent upset stomachs
after taking his medicine. (all this is relayed to the
Dr) The Doctor increases his Zantac prescription to 150 mg twice a day, and tho
interested, he is not sure that the weight loss is a problem YET. He says we do
not know how much he SHOULD weigh normally since he has been on the meds for
over a year and not growing normally. It may be that he will continue to be
thin, and that without the medication making him hungry his appetite will
lessen and he will lose weight til his body is content with itself.
Ian is put through the litany of tests, hold your
head up for 2 full minutes while lying down, holding a leg up the same amount
of time(separate test tho ) stand up, sit down, bend over, flex etc. etc. Dr S
is impressed, he corrects the residents’ assessment of Ian’s neck
strength, he feels it is fine and explains why. Also he finds another feature
that the resident failed to notice.
Something about an asymmetrical growth pattern to
the jaw. He quizzes the resident on the 3 possible causes of this condition. 1)
he was struck in the jaw. Ok rule out this one. 2) it is just the way he is – maybe 3) cyclosporine – ta
da we have a winna!!! This
is when they decide to start to cut back on the cyclosporine.
Ian is thrilled when Dr S recommends we reduce the
cyclosporine from .75cc’s to .60cc’s, tho not much of a drop it
will give Ian some hope that there may be a day when he can get off this
medicine. The cyclosporine is the one he hates the most. He had a choice
between a weekly shot or the nastiest tasting liquid
(even worse than paint thinner) and since he really hates shots, he went for
the liquid and that is twice a day. I always tell him how strong he is because
of how well he is dealing with all the medications and appointments etc.
The exam complete, we gather our things and head to
Phlebotomy. I warn Ian that his friend Sherma may not be there since it is so late
in the day. But who should I spy as we walk in the door??? Sherma.
Ian is happy and taken right in, it’s over and done in less than 5
minutes. A new record.
The
traffic tho heavy, keeps on flying along and we arrive home around
I case
you couldn’t tell, mom, basically missed the whole month of December. I
am sitting here typing today the whole month or at least what I can remember of
it. If there are few or no entries, then there is pretty much nothing disease
wise happening. Ian’s meds had remained the same since the October visit
and with the holidays, school and overtime at work; this is the 1st
time I have had to even think about updating these pages, which may actually be
a good thing. That means life is good and even normal around here. J
Mom
places a call to the rheumatology nurse for the results of Ian’s last
labs…
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P |
CPK or CK |
Aldolase |
Von Will |
LDH |
AST |
ALT |
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10-15-03/Wed |
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516 |
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10-22-03/Wed |
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501 |
15.3 |
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527 |
58 |
25 |
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10-25-03/Sat |
|
130 |
15.3 |
170 |
489 |
37 |
25 |
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11-05-03/Wed |
50 |
35 |
8.3 |
261 |
322 |
22 |
19 |
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11-26-03/Wed |
50 |
23 |
6.5 |
301 |
319 |
22 |
24 |
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12-24-03/Wed |
50 |
36 |
8.1 |
241 |
290 |
19 |
20 |
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01-21-04/Wed |
45 |
39 |
9.3 |
205 |
265 |
21 |
16 |
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02-26-04/Thu |
20 |
56 |
7.8 |
107 |
298 |
23 |
17 |
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04-21-04/Wed |
10 |
92 |
6.7 |
158 |
310 |
26 |
19 |
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05-10-04/Mon |
9 |
84 |
9.5 |
~~ |
298 |
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6-9-04/Wed |
9 |
74 |
7.5 |
196 |
256 |
25 |
15 |
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7-14-04/Wed |
8 |
79 |
7.7 |
125 |
203 |
24 |
31 |
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8-26-04/Thu |
6 |
72 |
5.2 |
177 |
312 |
30 |
14 |
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9-24-04/Fri |
3 |
80 |
7.3 |
~~~ |
236 |
26 |
35 |
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10-14-04/Thu |
2 |
96 |
7.7 |
161 |
310 |
27 |
13 |
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11-15-04/Mon |
2 |
82 |
6.4 |
107 |
197 |
26 |
33 |
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1-3-05/Mon |
2 |
76 |
3.9 |
158 |
270 |
26 |
12 |
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NORM |
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4-175 |
3.0-12 |
5.0-160 |
110-295 |
2.0-40 |
3.0-30 |
THEY ARE ALL GREEN !!!! THEY ARE
ALL GREEN !!!!
THEY ARE ALL GREEN !!!!
Ian is jumping up and down and
climbing the wall to celebrate!! After 14 months ALL his blood work is normal. Yahoo.
His father has just called and he
has him totally confused, since he answered the phone They’re Green!!! And
of course poor Dad hasn’t a clue. Tho it is being explained as I type.
This has turned out to be a very
GREAT day!!!!!
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JUNE 04 |
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