OCT 03

NOV 03

DEC 03

JAN 04

FEB 04

MAR 04

 

 

 

 

 

 

APRIL 04

MAY 04

JUNE 04

JULY 04

AUG 04

SEPT 04

OCT 04

NOV 04

DEC 04

JAN 05

FEB 05

MAR 05

 

 

 

OCTOBER 2004

 

FRIDAY OCTOBER 1ST , 2004

 

     Dropped the boys at Colin’s and headed to work, they all came over here when I got home. Only seemed fair to me that I take them and let Colin’s folks have some free time, they had the clan all day for me.

 

     I got all the gifts wrapped and into the gift bag, haven’t seen the boys since they headed to their room to play video games.

 

SATURDAY OCTOBER 2ND , 2004

 

     Hooorayyy a day off, but still have to grab the boys and go early, I had them each pack bags in preparation of a LOOONG and BOORING day.

 

     We are out the door by 8:40 and off to the Glocester Rhode Island Country Club, for Auntie Michelle’s Baby Shower. We arrive by 9:45 and it starts at 10:00. The boys and Miss Em (cousin) have a grand time coloring and playing at the back of the room while Auntie opens gift after gift after gift. (hope they have a truck to get this all home with. It took her an hour and a half to open all the gifts, yikes!!!

 

     So I guess the baby shower part of their day wasn’t so bad after all. Next stop Mom’s school, she has homework to do and no time to get to school to do it.

 

     We get there around 2:00 and settle in, the PC’s they have a few problems with and I tell them to either work it out or find something else to do, NEXT time we shall bring DVD’s, I forgot that there is a TV in the room, but not a lot in the way of channels for them to watch.

 

     Mom gets some of her homework done, but no as much as I had thought when I look it over at home, oh well, will head straight to school early again on Tuesday.

 

 

MONDAY OCTOBER 4TH , 2004

 

        Mom finally called Dr Laura about the blood test results and here they are, but as always the Von Willie is STILL not back, what a pain.

 

 

P

CPK or CK

Aldolase

Von Will

LDH

AST

ALT

10-15-03/Wed

~~

516

~~

~~

~~

~~

~~

10-22-03/Wed

~~

501

15.3

-

527

58

25

10-25-03/Sat

~~

130

15.3

170

489

37

25

11-05-03/Wed

50

35

8.3

261

322

22

19

11-26-03/Wed

50

23

6.5

301

319

22

24

12-24-03/Wed

50

36

8.1

241

290

19

20

01-21-04/Wed

45

39

9.3

205

265

21

16

02-26-04/Thu

20

56

7.8

107

298

23

17

04-21-04/Wed

10

92

6.7

158

310

26

19

05-10-04/Mon

9

84

9.5

~~

298

~~

~~

6-9-04/Wed

9

74

7.5

196

256

25

15

7-14-04/Wed

8

79

7.7

125

203

24

31

8-26-04/Thu

6

72

5.2

177

312

30

14

9-24-04/Fri

3

80

7.3

 ??

236

26

35

NORM

 

4-175

3.0-12

5.0-150

110-295

2.0-40

3.0-30

 

     Ian won’t be happy that the ALT went up, but it is not by a lot and I don’t expect it to change the tapering schedule. So things are still looking good.!!!

 

 

     Dad called at 11:00 to say they were headed for home, and would call again later tonight, seems since the race is over, NEXTEL has taken the PODS out and the service is a bit lacking.

 

    

 

TUESDAY OCTOBER 5TH , 2004

 

     Expect dad home some time today……Dad arrived at 5pm ish and the boys were thrilled, mom is at school and will see him when I get home. Ashley takes Ian to band and brings them back around 7:00

 

 

 

FRIDAY OCTOBER 8TH , 2004

 

PREDNISONE

ZANTEC

FOLIC ACID

METHOTREXATE

NEORAL 

3 mg/day/AM

75 mg/day/AM

1 mg M-F/AM

12.5 mg Twice Daily

Saturday ONLY

.75 CC

Twice/daily  

ADJUSTED

MEDS

EFFECTIVE

10/8/2004

NEORAL

2 mg/day/AM

75 mg/day/AM

1 mg M-F/AM

12.5 mg Twice Daily

Saturday ONLY

.75 CC

Twice/daily 

 

 

MONDAY OCTOBER 11TH , 2004

 

     COLUMBUS DAY, we spent the day at the Zoo after dropping off the crib to Auntie Michelle.

 

 

THURSDAY OCTOBER 14TH , 2004

 

APPOINMENT W/ RHEUMETOLOGY 11:15

      Ian and I headed out around 9:00, good thing too, traffic was a bear. We were taken right in and Ian had his vitals checked       BP was good @ 129/68,

                                             Weight was 80.2 lbs an increase of only .09 lb’s from the last trip.                                                     Temp was again 99.30

                                             Height was 4’ 8.5” a growth of .5” in 2 months this is good news since over the course of the 10 months prior he had only grown .5” total.

 

     We see Dr B again, and we let him know that Ian is having a few more upset stomachs than he was before. It doesn’t seem to be Methotrexate related so that is ok.

 

     I was asked to fill out a survey of what I think of how well Children’s Hospital has treated the Dermatomyositis and I give them glowing reviews J.

 

     Dr S comes in and this time it is quite a list of tests to do, just to test the muscle strength, etc. he does however notice some weakening in his neck muscles. This is NOT good. He asks about the meds and we tell him, the current dosages. He says we will look at the blood tests and if they correlate with what he sees we will have to come back in 1 month not 2, for another visit. I am to call him NEXT Friday (10 22 04) to see what we have. And to make an appointment based on the results.

 

     Ian is disappointed that the medicine will not be changing at all, for at LEAST a month. He really wanted the Cyclosporine to go down some.

 

      Remind him this our 1st set back and it in itself is a very minor one. We don’t want his body to fall down on the job, as we let it take care of itself. Cause if it does and we have to start over , THAT would be worse. We don’t have to INCREASE anything so we are stable.

 

     We get to phlebotomy around 11:59 and I sign us in, I put SHERMA ONLY next to his name, and we wait. Around 12:10 I see Sherma with a basket and it looks like she is headed elsewhere, I don’t worry since I have already signed in and it states Ian wants HER. Boy was I wrong.

 

At 12:20 Ian is called and I am told Sherma has gone to the floors to do some draws. I am NOT happy. I ask Ian and he starts to cry. So big bad Mama starts insisting that I had his name on the list BEFORE she left and didn’t anyone bother to look ahead??? Etc. her supervisor has her paged and by 12:30 she has returned. Ian is thrilled and she is flattered.

 

     The blood is drawn and we have a new test , he got the ole pea in a cup thing. No problem with that one he says. We leave it where it was requested and head for home.

 

     Ian and I stop at McDonald’s for lunch, mom gets her nails done and we arrive at home JUST as Dylan steps off the bus. Talk about timing!!!!

 

     They work on their homework and around 5:30 we head for Mom’s school again,(2nd day this week) so she can do homework. (homework can ONLY be done on the PC’s at school) We are there until 8:30 and get home kind of late. It’s into bed for everyone, pooped.

 

FRIDAY OCTOBER 15TH , 2004

 

1 Year Anniversary of Diagnosis

What a difference !!

Text Box:

He didn’t look sick to me THEN but he does NOW – sooo thin.

These were taken in OOB, ME

 8/27/03
 
 

 


 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Here we are,

School Photo

Taken 10/5/04
 
 

 

 

 


FRIDAY OCTOBER 22ND , 2004

 

 I call Dr S’s office to get the results of the blood work, since I was sooooo busy today it is after 4:00 when I call. I got the machine and leave a message for them to call me back on Monday. Oh well, another couple of days.

 

 

MONDAY OCTOBER 25TH , 2004

 

     Keith gets the call back from the Assistant and relays the message to me. He tells me Ian needs to be seen in 1 month, oh that’s not good. I ask a few more times is that all she told you?? Yep. no results? Nothing? Yep. Ok I’ll call her again when I get home

 

I call and leave another message that I want the RESULTS and I’ll be needing an appointment since when we left we weren’t sure as to when we had to return.

 

I don’t tell Ian about this set back, at least not until I talk to someone and get the ACTUAL results and can see how they look myself.

 

TUESDAY OCTOBER 26TH , 2004

 

 

     Just as I am getting settled in for class, my cell phone rings, it is one of the nurses and she has Ian’s results and is able to tell me what I want to know

 

 

P

CPK or CK

Aldolase

Von Will

LDH

AST

ALT

10-15-03/Wed

~~

516

~~

~~

~~

~~

~~

10-22-03/Wed

~~

501

15.3

-

527

58

25

10-25-03/Sat

~~

130

15.3

170

489

37

25

11-05-03/Wed

50

35

8.3

261

322

22

19

11-26-03/Wed

50

23

6.5

301

319

22

24

12-24-03/Wed

50

36

8.1

241

290

19

20

01-21-04/Wed

45

39

9.3

205

265

21

16

02-26-04/Thu

20

56

7.8

107

298

23

17

04-21-04/Wed

10

92

6.7

158

310

26

19

05-10-04/Mon

9

84

9.5

~~

298

~~

~~

6-9-04/Wed

9

74

7.5

196

256

25

15

7-14-04/Wed

8

79

7.7

125

203

24

31

8-26-04/Thu

6

72

5.2

177

312

30

14

9-24-04/Fri

3

80

7.3

 ??

236

26

35

10-14-04/Thur

2

96

7.7

161

310

27

13

NORM

 

4-175

3.0-12

5.0-150

110-295

2.0-40

3.0-30

 

 

     Gee these results don’t look like they warrant a visit in 1 month?? So I ask the nurse, and she tells me “oh no, LABS in 1 month and come in here in 2 months” YAHOOO we aren’t as behind the eight ball as I thought. I am so glad I keep records of all these things.

 

 

SATURDAY OCTOBER 30TH , 2004

 

     We take the boys on the Newport Halloween Dinner Train, the boys had a great time, it was an hour and a half train ride, and all the kids in costumes, and Gramma B came along too.

 

SUNDAY OCTOBER 31ST , 2004

 

HALLOWEEN

 

     This year Mom was so busy at work and school, that not much got done for Halloween, the boys dressed up and went trick or treating around the neighborhood (local mall was NOT doing anything L ) they got way more candy than they needed. No photos yet, I’ll work on it.

 

 

OCT 03

NOV 03

DEC 03

JAN 04

FEB 04

MAR 04

 

 

 

 

 

 

APRIL 04

MAY 04

JUNE 04

JULY 04

AUG 04

SEPT 04

OCT 04

NOV 04

DEC 04

JAN 05

FEB 05

MAR 05