OCT 03

NOV 03

DEC 03

JAN 04

FEB 04

MAR 04

 

 

 

 

 

 

APRIL 04

MAY 04

JUNE 04

JULY 04

AUG 04

 

 

 

 

 

 

 

 

 

 

 

JANUARY 2004

 

 

THURSDAY  JANUARY 1ST, 2004                              HAPPY NEW YEAR ?????

 

     I am left wondering at this point if it WILL be a Happy New Year.  I know, I know, think positive. I am trying, but if the Dermatomyositis was the ONLY problem, well things would be looking just ducky.

 

It is this Bone “thing” that has me worried. From what I have read and researched about these “things”, regardless of what it is, cyst or tumor, it means surgery to correct it. I am so NOT looking forward to telling Ian this. He has been SOOOOO strong and brave thru this whole thing. He doesn’t complain about much, and the ones he does have are quite valid.

  

I am afraid that when I tell him about another hospital stay, ALL of his bravery will go out the window. (not that I would blame him, I know if it were me, mine would – how I wish it WAS me and not my little boy)

 

Ok shaking it off, shaking it off, New Years around here was quiet. We all stayed in and did whatever. We got Xmas packed away again, yahoo I have my house back. No more tree to trip over and toys everywhere. Had the boys move all the new toys into their room, no where to put anything yet, but at least this way 90% of the house is back to normal and I can close the door to their room. LOL.

 

Dad watched football and Mom again was scouring the internet for a new car.

 

Mom headed for bed around 8:00 since work comes very early. Gee almost forgot there is some good news for today. We start the tapering off of Ian’s Prednisone

 

PREDNISONE

ZANTEC

FOLIC ACID

METHOTREXATE

 

50 mg/day/AM

75 mg/day/AM

1 mg M-F/AM

12.5 mg Twice Daily

Saturday ONLY

 

ADJUSTED

MEDS

EFFECTIVE

1/1/2004

CYCLOSPORINE

45 mg/day/AM

75 mg/day/AM

1 mg M-F/AM

12.5 mg Twice Daily

Saturday ONLY

.5 CC

Twice/daily 

 

We will go down 5mg per week unless told otherwise by Dr. S, here’s crossing my fingers for no relapse.

 

FRIDAY JANUARY 2nd , 2004

 

 Things still in the normal gear for now, but getting close to the 9th appointment for the MRI.

 

Mom is still looking for her new AUTOMATIC SHIFT car. I thought I had a deal for a new Mitsubishi, but it didn’t work out. I shopped around and then went back to Central Mitsubishi in Raynham. FOLKS, avoid this place at all costs. I had a great deal all set and then the sale of my old car fell thru. Well when I went back with this information not only did the price of the car suddenly go up $1722.00 but they then only offered me $2000.00 for a trade in that the NADA says is worth $3100.00 and the Sale Manager was belligerent to boot. Guess that is what happens to females alone buying a car. (This was my deal to do, and husband was ok with it, so I didn’t need to drag him along to the dealerships) So the boys and I walked out on the deal and I really do need to thank the belligerent S.@.B.

 

If I had bought that car on 12/30/03 I would never have found the one I was MEANT to have.

I have loved the Mazda6 since I saw it Xmas of 2002 while visiting my in laws in Florida. Well with the possibility of moving etc etc, that one was just too much $$$. The Mazda3, NEW in 2004 was JUST the ticket.(the 4 door model NOT the 5 :::shudder::: that one is to Momish for me LOLOLOL)

 

I do all my pricing via the internet BEFORE I even go look at a car. That way if I do like it, I am not clueless. The place was very short on Sales help; I did end up speaking to the Sales Manager, since everyone else was busy. He gave me a plate and the keys and said try it, with out so much as a copy of my license. I was floored. I took off for ˝ hour all by myself. I was on the highway and the back roads. And folks this thing is the B*lls. I had already priced this lil baby out and they offered me a deal for $200.00 LESS than the internet site I was looking at. It was sold in minutes.

 

The kids were a bit disappointed that I didn’t take them with me this time, but made things soooo much easier on me without them ;).

 

 

 MONDAY January 5TH , 2004

 

The Boys go back to school today from their Xmas vacation, as with most kids they would rather not. J . But the bad news is, today is the day Ian has gym. I have already called his teacher and told him about the bone “thing” and that there is to be no running around type of stuff, since I am already pushing our luck by letting him ditch the crutches.

 

Well see how Ian feels about it when he gets home, I could be in deep doo doo.

 

Nope he is ok with the no gym thing, I have put in a call to the Pediatrician, Dr Laura since I really don’t know how we should handle PT. and speak to her voice mail, I leave a message that all is going well with the Dermatomyositis, but now we have the bone “thing” to deal with. And also is there some “other” Orthopedic person she knows of, since I didn’t “clic” with Dr K.

 

Ok off to PT. I tell his therapist about the new discovery and she adjusts accordingly, about 20 minutes after we get home from PT the phone rings. Yep it is awesome Dr Laura. I give her the 411 on the Ortho stuff and what do I do??

 

She recommends another Dr. who is associated with the same hospital but actually see patients at her office too. WOW that is a WHOLE lot closer to home for us. She gives me his number and tells me to call and see if we can get squeezed into his next session at her office. She tells me he VERY friendly and will explain in detail what is going on. Now that sounds more like it.

 

 

  TUESDAY January 6TH , 2004

 

 Well I wait until 9:30 which is HOURS for me since I get to work so early, I call the number I got from Dr Laura, no one is in the office today. But they give a list of phone numbers and I try one of those. I get an assistant for Dr Z and explain the situation to her. The 1st thing she has available is March. Yikes!! There is always a possibility of cancellation she tells me. Great I tell her my name and phone numbers and if she can squeeze us in at Children’s please do and not to worry about if it is an OK time. You can see my son when?? Ok fine we’ll be there. This in my book, is NOT an optional thing to be rescheduled. I drop what ever and get him in to see the people he needs to see.

 

So at this point there is nothing more to be done today, I will try again tomorrow to make an appointment closer to home.

 

 

 

THURSDAY JANUARY 8TH , 2004

 

PREDNISONE

ZANTEC

FOLIC ACID

METHOTREXATE

CYCLOSPORINE 

45 mg/day/AM

75 mg/day/AM

1 mg M-F/AM

12.5 mg Twice Daily

Saturday ONLY

.5 CC

Twice/daily   

ADJUSTED

MEDS

EFFECTIVE

1/8/2004

CYCLOSPORINE

40 mg/day/AM

75 mg/day/AM

1 mg M-F/AM

12.5 mg Twice Daily

Saturday ONLY

.5 CC

Twice/daily 

       

     I try again to make an appointment locally, no luck, it’s a good thing I took the appointment in Boston, when it became available.

 

FRIDAY JANUARY 9TH , 2004

 

It’s a typical day, Mom to work at 0330, Kids and Husband to school. But Keith meets me at home at 1:00 and we get ready to head to Boston for the MRI. We pick the boys up at school at 2:00 and off we go again. The traffic was a breeze and we arrive at 3:05. Today is a BITTERLY COLD day. I think the high is a balmy 90 and a howling wind. YIKES!!!

    

Since we are early I figure we can hop up to Rheumatology and pick up the results of the last set of labs done on 12/24/03.

    

We always seem to have impeccable timing, we find Dr Susan at the computer adjacent to the waiting room and she comes out to say hi when she hears me ask for his blood work and tell them he sees her.

 

She confesses that she ate MOST of the goodies that we brought in on the last visit. Gee better her than me. I am supposed to be on a diet, and I have TONS of cookies at my house. I call Keith over since he is the responsible party for any weight gain. LOLOL

 

 

CPK or CK

Aldolase

Von Will

LDH

AST

ALT

10/22

504

15.3

221

527

58

25

10/25

130

15.3

170

489

37

25

11/5

35

8.3

261

322

22

19

11/26

23

6.5

301

319

22

24

12/24

36

8.1

241

290

19

20

NORM

4-175

3.0-12

5.0-150

110-295

2.0-4.0

3.0-30

 

I ask if I can get a copy of his blood work from the last visit and she says SURE and immediately pulls it up on the computer. We look at the results together and she says that they are ALL looking good except one. The von Willdebrand. And that one is not to far off. (see the above chart) This is WONDERFUL news, now just crossing my fingers that they STAY down now that we are backing off the Prednisone.

 

We chit chat a bit and Mom makes the mistake of mentioning the EMLA (which means needle) and Ian starts to get the quivery lower lip. Dr Susan takes it from there and tells him how brave she thinks he is and how much SHE as a big person didn’t like having her blood drawn the other day, but Ian must be such a champ at it. She then gives him a big hug. (man has he got it figured out on how to get the attention of pretty women ;) we give him the business about this in the elevator LOL)

 

Just want to say THANK YOU Dr Susan, for always taking time for us, when ever we just show up.

 

We use the Fegan6 waiting area to put on the EMLA and then head down to the 2nd floor and radiology.

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

Ok it’s off to MRI now and we arrive at the waiting area around 4:00, we were told to be there 15 minutes early for our 4:30 appointment. Not to sure why, since nothing happened the whole 45 minutes we sat there. I stood at the MRI desk for a minute or two waiting for one of the women to get off the phone when I remembered I had to check in at the MAIN radiology desk, down the hall. OK off I go and I check in here fine and head BACK to the MRI waiting area. At 4:45 I ask at the MRI desk how much longer it will be, since his appointment was 15 minutes ago. They ask his name and then if I checked in. yep I tell them at the main desk, oh no… did you check in here TOO. I didn’t know I had to. Oh yes you have to check in Twice. I am a lil dumbfounded at this but they call out back and tell me Ian will be seen in just a couple of minutes.

 

Sometimes I would wish they would remember that we all don’t KNOW ALL the rules. I really don’t WANT to know all the rules. I wish I didn’t even have to go there with my son. But I do - so I will, But can you clerks remember that we parents are not usually functioning at top efficiency if we are there with our kids. We are worried, We are stressed, We are tense and so way not sure of who to see or where to push the paperwork.

 

 Within a few minutes Ian is taken in. Dad goes with him this time. Mom just can’t this time, so I stay with Dylan and play in the waiting room.

 

He does great I am told by Dad, when they return. We bundle up and get ready to go to dinner. Since it is now 6:00 and we are all starving. When we get to the lobby we stop and the CVS to look for the right EMLA bandages (they are clear and the stores local to our house do not carry them) and while we are there Gramma calls to see how things went. No news to tell today, just the test, no results til we see the DR on the 13th.

 

Ok so we head to the food court at the Longwood Galleria and have dinner. Kids had duh, McDonalds and the grown ups had Chinese. We get back to the car and head for home. Just as we get to the light on the corner of Rt 9 my husband’s cell rings again, this time it is Gramps from Florida. I tell him we are headed home and he will call us there.

 

Mom has been at it since 3:00am when she go up for work, I can hear my pillow calling my name…that’s where I am headed when we get home.

 

Gramps calls and talks to Ian then me, then Dylan then his lil boy..I remind him to check this site. As I always try to update it as soon as possible. :::wavs::: Hi Dad, Hi Lois !!!!

 

Mom does lights out for the night………………………………………………………………………..

 

MONDAY JANUARY 12TH , 2004

 

     Today is PT day and of course the bus is late getting the boys home form school, they arrive at 3:45 and I am waiting at the end of the street for them. Off we race to the appointment. We arrive at 3:58 and sit down in the waiting area. The therapist does not arrive until 4:10 (so much for worrying about being late.) things go well, but she is still concerned about how she should adjust the PT because of the bone thing. I will have to ask tomorrow when we see the Dr.

 

We get home around 5:15 and have dinner etc, Mom in law arrives around 7:00( she is going to put Dylan on the bus in the AM and be there when he gets home just in case we get held up in Boston)

 

Dad gets home about 8:30. It’s lights out early since we have to be out of the house by 6:00am to be in town by 8:00

 

TUESDAY JANUARY 13TH , 2004

 

     We make it out of the house on time and head for Boston, traffic was not too bad and we arrive at Children’s around 7:40.  Since it is very icy and Ian is supposed to be using crutches we opt for the wheelchair so there is no possibility of him falling. We make the required pit stop at the lobby bathroom and also apply the EMLA just in case, and then head for Radiology. We at least now know a more direct route there, LOL.

 

I check in (only once this time) and we settle into a few seats, Ian is quite content playing his GameBoy and it is only minutes before he is called in. Dad goes this time too. 8:10am

 

Mom sits in the waiting area and plays with her Palm Pilot and before you know it they are back. I had just been looking at the clock on the wall and thinking that Dylan was headed out for the bus and they’re done 8:25am

 

He didn’t need any contrast, so no needles and Dr K was looking at the CT scan as it was being done. They even redid a few areas because they couldn’t see what they wanted on the 1st set. I suppose Dr K gets a few brownie points for actually being there for his test, but I hope his bedside manner has improved too. I feel clueless when I leave Orthopedics.

 

They were told to wait for the results, so that we can take them with us to the appointment later.

 

The tech brings out the results and we are free to do whatever until the Dr Appointment at 10:00. So we head off to the café and have breakfast. By the time we are done with this it is time to head upstairs to the appt.

 

We check in and are taken to the exam room quickly. No sooner does the nurse put the CT scan in the holder outside the room, then someone picks it up and walks away with it. (this later turns out to be Dr R)

 

We all get to go in this time and we are seen by a Dr R and he looks Ian over, when I mention the crutches he says “I can see why” I am puzzled, but we move on. Asks Ian about any pain etc and Ian say nope. Then he heads out to confer with Dr K.

 

They both return and we talk for a bit, Dr K asks if we have been using the crutches and I tell him only a bit, he has put us between a rock and a hard place. We HAVE to exercise the leg muscles on one hand but yet have to be careful of the leg bone. He won’t get better from the Dermatomyositis if we don’t exercise the legs.

 

He tells us he thinks it is an enchondroma (enkun’drowmu – A benign (noncancerous) growth of cartilage in the bones or in other areas where cartilage is not normally found) I really didn’t understand it at the time. Any information I relay is after the fact, via web searches. I ask if I can SEE the MRI that gave them this information, sure, if this computer works. Dr K brings it up and shows me and I ask if I can get a print of the view that we are looking at and I am told “no” no explanation, no reason just no. Excuse me, what is up with this?? If I had not asked I wouldn’t even have seen that much. And Keith and I had already looked at the CT scans at breakfast or we would have never seen those either. He wants to “just watch” it at this point.

 

We were told if it breaks of course then they will biopsy it and repair the break, they want to see him again in 3 months and will x-ray it again in 6 months. If there are any changes then they will probably biopsy it while doing the CT scan. Also if he has any pain in this area or trouble walking he should be seen right away. So let me see, a month ago we put the kid on crutches, now it is do nothing and skip the crutches. This just doesn’t sound right to me. Thankfully I already have an appointment with another orthopedic person

 

I ask about PT and he says no contact sports and no gym but no other details than that. So what do I tell the therapist???

 

Well if nothing else it is not more BAD news, it’s more like non news. We are all done and ready to head home at 10:30.

 

We scoot up to the 6th floor and drop off some more goodies for Dr Susan and then head to the Chocolate store. After that Keith decides to donate blood. (mom has been thinking about it, but just not brave enough yet) we hang out there until he is done. We head for home around 12:30.

 

Now it is just another day, tho one other bit of news. Ian has gotten to the point that he can take all his medication BY HIMSELF. I check the amount on the Cyclosporine but he even takes that on his own. I am proud at how well he is handling all this, but on the other hand I wish he didn’t HAVE to.

 

THURSDAY JANUARY 15TH , 2004

 

Dosage change

PREDNISONE

ZANTEC

FOLIC ACID

METHOTREXATE

CYCLOSPORINE 

40 mg/day/AM

75 mg/day/AM

1 mg M-F/AM

12.5 mg Twice Daily

Saturday ONLY

.5 CC

Twice/daily  

ADJUSTED

MEDS

EFFECTIVE

1/15/2004

CYCLOSPORINE

35 mg/day/AM

75 mg/day/AM

1 mg M-F/AM

12.5 mg Twice Daily

Saturday ONLY

.5 CC

Twice/daily 

 

WEDENSDAY JANUARY 21ST  , 2004

 

 Appointment with Rheumatology 11:30

 

     I am up around 6:00, wow I slept in today, Ian gets up at 7:15 like usual, I ask his brother if he wants to go WITH us this time or does he want to go to school. (he has been worried about his brother when we head to Boston and he doesn’t  come with us.) he decides he wants to go to Boston even tho he’ll be bored.

 

We head out around 9:30 for his appointment, stop at Dunkin Donuts and hit the highway. We make OK time, takes us about 1.5 hours to get there. (Usually 1 hour) I get into the garage at 10:45 and there are no spots on the lower levels, we en up on the roof. The kids think this is neat, but getting down is a royal pain.

 

We arrive at Fagen6 around 11:00 and the kids settle in, we are called within a few minutes, even tho we are early. Height and Weight are taken. He is still 4’7.5” tall. Tho he has gained 3.2lbs. His BP is 141/71. He is running a temp of 1000 this time. He has had a cold forever this winter, but up until now it has been mild, now it has turned into a nasty cough.

 

We get to the exam room about 11:15 and get settled in. Dr. Susan pokes her head in and thanks us for the goodies we left her last week. She said she needed those that day. Glad we could help. She also said she looked at the test results from the CT and the MRI. She seemed to accept the recommendation of Dr. K to sit back and do nothing about the enchondroma. Also she would email me about the med student I am trying to find and then even print a copy of the new MRI for me.

 

Then we wait, and wait, and wait. The waiting room was the busiest I have ever seen it, when we walked in, almost as bad as Fegan2 is all the time, so I figure it will be a while. I hear discussions in the hall about how many people are waiting, well to me that must mean they are taking extra care of someone, and a mere 3 months ago that was probably us.

 

We are checked on once or twice and of course when Ian heads to the bathroom the Dr shows up. LOL  It is somewhere around 12:30 -12:40. The boys have been totally engrossed in their Game Boys and barely noticed the time passing. I tell Ian that at least the EMLA got plenty of time to soak in, since we didn’t put it on until we got into the exam room.

 

Dr J and I go over what has been happening for the last 4 weeks since the last visit. He knows about the MRI and the CT Scan and he then logs right in to the hospital computer and checks out the results, so he has ALL the information relating to Ian. (Now why can’t orthopedics be as knowledgeable??? Or as helpful??)

 

Dr J tells me ALL about the findings on the MRI/CT reports and I apologize for taking up his time in Rheumatology with Orthopedic questions, but I feel much more comfortable up here and they always have been friendly and helpful and take the time to explain everything. This is NOT how I feel in orthopedics.

 

We go over Ian’s meds and how he feels. Ian feels fine tho I have noticed he gets flushed cheeks sometimes, and his eyes look purpler on some days, I’m thinking it could be the light or just the time of day, because today they look fine. (it may also be me worrying since we are going down on his Prednisone ::shrugging::: who knows.)

 

Dr J moves on and starts to examine Ian. He seems to be doing fine. All the muscle tests he goes thru look good, even his neck muscles this time seem to be in good shape.

 

I ask if I can get 2 of Ian’s meds in 3 month increments since they are so pricey at the retail pharmacy and if I mail away for them it will save big bucks. No problem there.

 

We discuss how we are tapering the meds and I show him the charts of his blood work results and med dosages that I created for this web site and my own records. “this is great, can I copy them?” OF course. I’ll even print you one in color for the next visit. (mom is patting herself on the head. Yep good job)

 

We are all done and he goes to get Dr S (the boss;) and he comes in to check on Ian, says he looks great, tho the leg muscles seem to be a bit weak. (Got that rock and a hard place here-exercise the legs muscles but take it easy on the left leg BONE. How do we accomplish THAT??)

 

He says Ian’s neck muscles look good, he is doing super. Yahoo. We are told to hold off tapering the Prednisone until we get the results of today’s blood work. Well I kind of expected that.

 

This is yet another good visit. Now off to Phlebotomy. We ask for Sherma but she is out to lunch, and another tech has already come into do the work, Ian toughs it out and we are FINALLY ready to head home.

 

It is 2:25 before we get back to the car and get ready to go. And of course the traffic is horrendous. We finally arrive home at 3:45pm. Good thing Dylan decided he wanted to go with us to Boston today, his bus get him here at 3:30 and I would not have made it. I left the house at 9:30 and returned 6.25 hours later and we made NO side trips at all. I was going to try and donate blood today, but things just didn’t work out. Maybe next time. I was just glad to be home again.

 

While updating some of my notes later on I try to figure out when the next appointment should be, and it is not on a day we want. 4 weeks from today is 2/18 Ian’s birthday. When I tell him this he breaks down, “not on my birthday” I comfort him and tell him no problem, THIS time we will have to reschedule the appointment. Either 3 weeks or 5 weeks or even on the 13th when we have another appointment in Boston with the 2nd orthopedic Dr. but it WILL NOT be on his birthday “I promise”

 

FRIDAY JANUARY 23RD , 2004

 

Today is just another day, mom gets a phone call that her new car has arrived at the dealership and we can do the paperwork on Monday and the car will be ready Tuesday. (I have school and may not be able to pick it up until Wednesday oh well)

 

The boys have friends over and they are downstairs playing Game Cube, when I check my email and find a note from Dr J. Ian’s numbers look GOOD, even with the reduction in Prednisone. YAHOO YAHOO!!!!!

 

The only one he didn’t have was the vonWil and he asked me to page him next week to get that one. THANK YOU THANK YOU DR J. That was a great bit of news.

 

 

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

35

8.3

261

322

22

19

11-26-03/Wed

23

6.5

301

319

22

24

12-24-03/Wed

36

8.1

241

290

19

20

01-21-04/Wed

39

9.3

205

265

21

16

NORM

4-175

3.0-12

5.0-150

110-295

2.0-40

3.0-30

 

SATURDAY JANUARY 24TH , 2004

 

Dosage change

PREDNISONE

ZANTEC

FOLIC ACID

METHOTREXATE

CYCLOSPORINE 

35 mg/day/AM

75 mg/day/AM

1 mg M-F/AM

12.5 mg Twice Daily

Saturday ONLY

.5 CC

Twice/daily  

ADJUSTED

MEDS

EFFECTIVE

1/24/2004

CYCLOSPORINE

30 mg/day/AM

75 mg/day/AM

1 mg M-F/AM

12.5 mg Twice Daily

Saturday ONLY

.5 CC

Twice/daily 

 

The boys, Dad and Mom in Law have headed off to Maine today. To visit the ancestors, great Aunts, and The Cookie Jar (this is an AWESOME Bakery. If you ever get to South Portland THIS is the place to go for sweets) It is a small white building next door to the South Portland Fire Department and has been open since Keith’s Grandparents were little.

 

 

SATURDAY JANUARY 31ST , 2004

 

Dosage change

PREDNISONE

ZANTEC

FOLIC ACID

METHOTREXATE

NEORAL

30 mg/day/AM

75 mg/day/AM

1 mg M-F/AM

12.5 mg Twice Daily

Saturday ONLY

.5 CC

Twice/daily  

ADJUSTED

MEDS

EFFECTIVE

1/31/2004

NEORAL

25 mg/day/AM

75 mg/day/AM

1 mg M-F/AM

12.5 mg Twice Daily

Saturday ONLY

.5 CC

Twice/daily 

 

 

OCT 03

NOV 03

DEC 03

JAN 04

FEB 04

MAR 04

 

 

 

 

 

 

APRIL 04

MAY 04

JUNE 04

JULY 04

AUG 04