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JUNE 04 |
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JUNE 2005
We get the
results of ALL the blood tests in the mail today, with an apolgy
from Dr Laura about the 2nd trip we had to make. The results are OK,
but the LDH is still up, and per the normal range for
this lab is seems to be higher than the last time. L
|
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P |
CPK or CK |
Aldolase |
Von Will |
LDH |
AST |
ALT |
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10-15-03/Wed |
~~ |
516 |
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10-22-03/Wed |
~~ |
501 |
15.3 |
|
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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01-03-05/Mon |
2 |
76 |
3.9 |
158 |
270 |
26 |
12 |
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3-28-05/Mon |
2 |
86 |
7.5 |
118 |
296 |
29 |
11 |
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NORM Childrens |
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4-175 |
3.0-12 |
5.0-160 |
110-295 |
2.0-40 |
3.0-30 |
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5-13-05/Fri |
2 |
88 |
4.8 |
119 |
209 |
28 |
32 |
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NORM-Gateway |
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0-155 |
1.0-8.0 |
? |
100-190 |
20-65 |
20-65 |
Ian is
staying after school today, for band practice, since their spring concert is
tonight. I wait for the Dylman at the bus stop and up to the school we go.
On the ride home, Ian asks if we can go to Staples.
“Now?” Yes.
And why do we need to do this? Seems
he wants to enlarge a picture for a project he is working on. OK next question WHEN did you know you had to do this? Last week, and WHEN IS IT
DUE?? TOMORROW. Grrrrrrrrrrrrrrrrrrrrrrrrrr.
Nope I am not running
crazy for you especially
since you knew last week and you give an hour to get it done.
We barely have enough time to get
done what we need to do now. We have to get home, they have to do homework, we
have to eat and be back at the school by
He explains the whole thing when
we get home, I ask him, :”what made you think I
couldn’t do this here???” so I take care of the problem at home and
we head back out the door. Off to Wendy’s and then back to school. Dylan
and I stay in the car and have dinner Ian heads in. we follow at
His beginner band is the 2nd
of 3 bands, they aren’t toooooooo bad. Once he
is done, he walkie
talkie’s me and we head for home.
PHOTO
OF CONCERT
YMY BIRTHDAY DAYY
I manage
to escape working today, which makes me very happy. It is a quiet day around
the house. Keith actually finishes painting the house and it looks AWESOME!!!!!
House photo
Dylan and
I head out to do the grocery shopping. He was grounded and had to go with me,
since Dad had told him to play outside, and when he went to his friends house, they went inside. Keith said he
couldn’t hear them any more, so on my way out I stopped at the neighbors
and he was “busted”.
I was
told to pick up my birthday cake, since the kids had ordered it last week. OK
when I pick it up. The boys have picked out a Power Ranger cake for me. Seems
good to me, I watch Power Rangers with them, and I just helped Ian do a massive
report on them, so it makes sense.
Ian has had a rough morning, he did not take his
Methotrexate last night, it was puked up. For the
second time in a day. So I told him he would still get 2 today since none of
them stayed down last night. He of course wakes up with an upset stomach.
Saturday’s
have been a real battle for us lately. Ian can’t seem to manage the 8
pills and the Cyclosporine with out throwing up. It ends up being an all day
event. He makes so much work out of taking the pills and gets upset and
worrisome, so that he frets himself into throwing up.
It is getting very difficult to muster any sympathy
for him, when he is doing it to himself. He spends most of the day sleeping.
Keith comes in a prepares my birthday dinner and
Ian eats like a fiend, but is all stuff he loves, Steak, Mashed Potatoes, Corn
on the Cob, Garlic Bread and my Birthday cake for desert.
Keith
wants to put up the old storm door today, so I run outside to take photos of
the house WITHOUT the door since I like the way it looks now. He asks if I
really want to put this door on. I tell him no I think the door looks awesome
the way it is. So we head to Home Depot to hopefully get a full glass one.
I found
the perfect door, however it has to be ordered. It will arrive in about 2 weeks
so no work on the house today.
It has
been about a week of non-stop 900 weather and humid, seems that the
weather has no happy medium. We have gone from a month of clouds and rain to an
oppressive heat wave.
Today is
my late day at work and I arrive home just before Ian, and we get to the usual
things. I step out on the porch to get the rug that was drying and notice that
Shadow is sleeping over in the grass in the corner. I think to myself ahhh be quiet and don’t disturb him, he is comfy.
Well once the homework is done the boys head out to the neighbors’ house
and the pool.
Once they get home, I notice that the dog has still
been very quiet, I look out to see him sleeping still in the grass, well this
seems to be a long time even for him, so I rap on the window which normally
makes him jump out of his skin. This time
nothing… again…. Nothing. I head down stairs, go out the back door,
and call his name. Still nothing… Once I get to his side, I realize that
he has passed on. He looks so comfortable, sound asleep in the cool grass. Now
how do I tell Dylan that his buddy Shadow has died?
I go back
in the house and call Dad, he will be right home to help me, tell the boys. Dad
arrives home to find us all piled into our bed watching TV. Dad breaks the bad
news, since Mom is already in tears. Ian does well with the news, but Dylan
does not.
Dad tells
him he is with Old Gramma and his brother Cooper that he
has missed since he died several years ago. Now they are all together again.
I head
home and hit the bed for a nap, Gramma B will be over to pick the kids up to
take them to her house for the weekend. It is mass confusion trying to get the
boys situated, I forgot to pack their bags last night and we are packing in a
hurry today. I hope they have everything.
They all
head out at about
Mom has dinner and to bed. Zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz.
Since the
boys are away, Dad and I have a date tonight.
Dad spends his day, getting one the Dragon Tattoos that he has wanted
for years. I found Ian some fabric with Dragons and Dad wanted those as
tattoos, so the guy freehand drew them and they look great. He had the right
leg done today he arrives home around
Well since he is constantly looking at the thing, I
change the plans and we head to a restaurant that he can wear shorts to. LOLOL. We
go to Ruby Tuesdays. The dinner is fabulous and then it’s off to the
movies to see the Stars Wars Film, Revenge of the Sith. This too was great and home about 10 and mom is
off to bed, she has to work in the AM at 0600. She is NOT thrilled about it,
but it is mandatory for at least 6 Sundays this summer, since the lone person
that covers Sundays took 8 of them off this summer, hummmph.
Keith is
off to finish the tattoos today. Before he heads out he runs the laundry thru
for me, since I am at work.
I get home around
Well
today is not a good day for mom, I received a letter from the Suncoast District
saying that they
DON’T want me. My
attendance is not acceptable. Never mind the fact that I spent 800 hours of my
time having and caring for my children. I had the bad luck of having my kids
BEFORE the Family Medical Leave Act was accepted by the Post Office. It took them 4 months to figure
this out?????? To day I am devastated is an understatement. I had really wanted
that office. When Keith 1st started talking about relocation, I had
always figured I would be without a job. Since I know how anal the
Well
I’m not going off quietly, I had started a letter to
We have
the battle of the Methotrexate again. Keith says he takes everything fine in
the Morning but when he tries to take the night dose it is guaranteed to come right
back up again. He gets so worked up that he does not want to take them and that
he will throw up, he makes himself do it. It is getting very frustrating
because on the weekends he does get much of his meds. They all end up down the
drain.
After I get home from work, Ian and Dad install the
new storm door. I absolutely LOVE the new front door and the old storm door
would have covered it up. They do a wonderful job and it works and looks GREAT.
Tonight
we have a frustrated Dad, and Mom is the calm one. We just have no idea what to
do with this one.
My Tour
Superintendent does finally place the phone call to Valrico. He speaks to the OIC and they have a great chat. He is NOT the one who makes
the decisions but he will forward his name and number to the Postmaster who is
out on a detail elsewhere. I feel better but still don’t hold out much
hold that she will respond.
I finish my letter and email it off, I then snail
mail a hard copy with my attendance forms to the eReasign person. I still
figure I will get the brush off. But I have to try.
Today is
the kids last day of school, they are thrilled. They spend their 1st
afternoon of vacation across the street in a friends
pool. Great for mom J
Ian does
fine with the Methotrexate in the AM but of course we have another scene at
night and all the meds come out once the Methotrexate goes in. Just shaking my head on this
one, I have no clue what to do. I don’t want him to have a relapse and I
want the meds to continue to decrease. However, that won’t happen if he
doesn’t take what he is supposed to.
Cousin
Nolan’s Baptism – Keith has been named the “Godfather”
and we have to be to the church by
If that
isn’t proof positive that it is all in his head I don’t know what
is. Keith gets the regular meds down and forgets the Methotrexate. We are going
to have a long talk with Dr. S tomorrow about this stuff, and have him explain,
that this is not an optional, these meds are needed in order for him to get
better.
So now,
we are off to the Baptism. We arrive at
Well the
boys get fidgety and I take them out side, figuring that there is only 15
minutes or so to go. Oh yeah right. Well they have a speaker and he talks for
an extra hour. So it is
We follow
Uncle Lance, back to the lake and get settled in, the
boys are immediately into their swim suits and off to the water. I don’t
think Dylan came out of the water for anything, except to eat all day. From
A great time was had by all, but it was a LONG day.
We get home around
Mom works
until
I suggest lunch in the café rather than over to the
Longwood Galleria. Yikes $23.00 later we are headed up stairs to the
appointment.
When we
go to get Ian’s vitals I get a shock, he has grown a whole inch in 3
months. Guess he is making up for lost time. His BP is lower than it has been.
(We definitely don’t take the stairs anymoreJ ) we wait an extra few minutes to see
someone, since we are in Dr Susan’s study, we wait for her… this is
a good thing. She thinks Ian looks MARVELOUS!!! She barely recognizes him. They
go thru all the tests and he is doing great. She heads out to get Dr S. and
when they return, there is a whole gaggle of them…. Yikes. They out number us. LOLOL Dr
Susan, Dr S and 3 more all to check out Ian. Glad we can help.
We discuss the changing of the pill Methotrexate to
the injection. Well come to find out this same liquid can be taken by mouth
also. The same way we do the cyclosporine. Great.
We’ll try that. But I want instructions on how to inject it JUST IN CASE.
I can’t go thru another 2 months of puking for no reason.
Dr Susan and Dr S discuss how much to decrease the
Cyclosporine by. The agree on .40 cc down from .60 cc. but then Dr S gives Ian
a stern reminder that this is ONLY if he can keep the Methotrexate in. because
if he can’t keep it in, they will have to go up on the Cyclosporine
again.
Dr Susan writes the prescriptions for the liquid
Methotrexate and the syringes with and with out the needles. We need needles to
draw the medication out of the vile, and then we discard the needle and give it
to him by mouth.
The head nurse comes in and gives us a lesson on
the HOW TO’s
of administering this medication, both orally and via injection. I think we can
handle it. She is a very good teacher. This surprised me, because every other time
I have had to deal with her, I got the feeling I was asking too many questions
and I was keeping her from doing something that she felt was more important
than what I needed. I was always imposing on her. This was a complete switch.
We head
for home around
Mom is
unable to get up today, she calls work and does not go in. she had intended on
painting, but the weather does not co-operate. It is raining. So she spends the
day cleaning.
Wow got
the blood test results in my email today from Dr Susan. She says that
Ian’s Blood test results look as good as he does. Yahoo
that is great news. So it looks like things have been in the green
basically since January 3rd , that is
almost 6 months of normal blood work. And less and less
medication.
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P |
CPK or CK |
Aldolase |
Von Will |
LDH |
AST |
ALT |
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10-15-03/Wed |
~~ |
516 |
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10-22-03/Wed |
~~ |
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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01-03-05/Mon |
2 |
76 |
3.9 |
158 |
270 |
26 |
12 |
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3-28-05/Mon |
2 |
86 |
7.5 |
118 |
296 |
29 |
11 |
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5-13-05/Fri |
2 |
88 |
4.8 |
119 |
209 |
28 |
32 |
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6-27- 05/Mon |
2 |
100 |
5.1 |
119 |
251 |
29 |
13 |
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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 |
Note: Dr S says the high
results that we get from the local lab, are most probably not as high as we
think. Their
normals
are for adults and not kids.
We are down to 2mg
Prednisone,
.40
cc Cyclosporine and
25mg
of Methotrexate , that is the list of active drugs.
The compensation drugs are
1
mg Folic Acid per day M-F and up to
150
mg Zantac twice daily IF needed, Ian
has been skipping this, he says his stomach is fine.
Mom is
all messed up today, she heads out for her errands and then to the Dentist with
Dylan, (he had his 1st cavity, just in a baby tooth tho) and once I
get there I am told it was YESTERDAY. Oh my, how did I do that? So we head to
the dollar store to kill time until my photos are ready.
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JUNE 04 |
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