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JUNE 2004

WEDNESDAY JUNE 2ND , 2004

Well Mom enjoyed her extra day off, made this a 4 day week end. Boy did I need that. I was just getting ready to head out to run some errands and the phone rang. OH MY!!! The trailer is ACTUALLY in. They want us to come up and check it out. Luckily it is only 12:15 and Keith is still home. So off we go, and it’s the right one this time.

Keith heads for work and I head to the bank to drop the paperwork and let them know when we need the money.

FRIDAY JUNE 4TH , 2004

HARRY POTTER MOVIE OPENS

SATURDAY JUNE 5TH , 2004

Well happy b/d mom. I spent the day at work running around like a nut, since some office monkey has decided that in order to keep the dock workers safer. ALL tractor trailers have to be DROPPED before they will be unloaded. Now we are pushing way over kill. They back in, Chock the tire, I pin lock them to the building, then they DROP THE TRAILER, I place a gladhand lock on the emergency airline connector AND THEN they need to give me their keys. Who the hell thinks up these things???????????????

After work Keith and I meet up at the trailer place, to do the paperwork and let the boys see the trailer. Then it’s off to grocery shop and collapse. What a LONG day.

WEDNESDAY JUNE 9TH , 2004

APPOINMENT WITH RHEUMETOLOGY BOSTON 11:00AM

PROMISED HARRY POTTER MOVIE AT THE IMAX IN NATICK AFTER DR APPOINMENT

We head for Boston around 0830. oops Mom forgot to call the school and let them know they both will be out today. Thank goodness for cell phones.

We arrive around 10:15, the traffic was a bear today. And head straight up to rheumatology hoping to get thru in good time so that we can make it to the 1:30 showing of Harry Potter. We are taken in almost immediately and we are in the room by 10:40. and wow we are seen by 11:00. I give them the cyclosporine pills that Ian decided against. (this stuff is so pricey, I am hoping they can find someone to donate it to, rather than waste it)

Dr Susan looks him over and thinks he looks “fantabulous” He is just amazing. His strength is good and he even grew a little bit since the last visit. He is up to 4’8”. When Dr S. looks him over, he to thinks he looks great, but says there is STILL some weakness in his neck muscles, but other than that wonderful. Ok so what’s next???

We will check the blood work this time and if all looks good we will resume lowering the dosages again. But because he is on so little now, it is at an even slower pace. Dr S. says that normal height growth should resume once he gets to 7mg of prednisone or less. Yahoo that is only a month away. Tho when he sprouts up taller than me, I may wish he hadn’t ;).

We head to the Phlebotomy dept. and again head right in and we are headed for the car by 12:15. this is amazing. We make the 1:30 show and get comfy, it NOW that Dylan decides maybe this ISN’T a good idea. I tell him we are not leaving and to get comfortable. I have brought the ear protectors that we use at the racetracks since he hates LOUD noises and put them on him.

He loves the 3D credits and attractions. The movie is excellent and yep Dylan did enjoy it, we head for home from Natick at 4:20. wow the traffic is the pits.

We get home around 6:00 and just call it a day.

FRIDAY JUNE 11TH , 2004

IAN MRI IN BROCKTON 10:00 Dad has volunteered to take Ian to this appointment.

I start my day 1.25 hours late for work. (Never heard the alarm AGAIN) I get out at 11:00 since I have a Dr Appointment for me at 12:15 (which is why Keith volunteered for the other appointment) but I catch up with them at the MRI place. Things have gone well. Ian did great, the tech was very impressed with the EMLA cream and Ian’s shot blocker thing, and wants the info so she can get some for their office. We are given the films and we are on our way.

I have tons of time since my appointment s only around the corner. So we all head over to Toys R Us. Ian of course makes out in the deal. I buy BOTH boys a new 10’ x 30” pool with filter. Dylan gets 2 bargain video games and Dad gets Ian Harry Potter for the GameBoy Advanced.

I go to my appt. and they do lunch, I catch up with them again at Wal-Mart and we pick up a few things for the trailer, since tomorrow is the day we FINALLY get to pick it up.

We watch Nextel Cup Qualifying and then head outside to set up the pool. Man did that take a while to fill. Kids wanted to go in it last night but it wasn’t done filling until 8:00pm.

Got an email from Dr Susan….GREAT NEWS….everything so far is in the normal range.

	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	pending	256	25	15
4 weeks @ pedi
NORM		4-175	3.0-12	5.0-150	110-295	2.0-40	3.0-30

We can start going down on the Prednisone again, to 8mg and wait till the Von Will comes back, if that is normal we will decrease the Prednisone by 1mg every 2 weeks, if not it will be 1mg once a month. You know what we are all hoping for………………………..

SATURDAY JUNE 12TH , 2004

Mom is working, we will meet up at the trailer place at 12:35 to pick up the trailer and then the work will begin. We have to UNLOAD the cellar and reload the trailer. But this will be fun.

They told us to come in at 3:00pm but we arrive at 12:30 Mom meets the boys there, since I was at work. We are taken care of fairly quickly. We sign all the papers, exchange the money and keys etc, and then it is off to our “orientation” Ok folks this is our 3^rd trailer, I think we’ve got it by now.

We have Mark take us thru the trailer, he is thrilled we know what we are doing, makes his life that much easier. Ok by 3:00 pm we are all hooked up and set to go. The kids are hungry so we stop at the BK on Rt. 24 on the way home.

When we get home Keith backs the trailer ½ way in. this way we don’t have as far to schlep all the stuff we have to put back.

The boys were SSSOOOOOOOOOOOOOOOOOO much help. They brought everything from the cellar to the trailer that was small enough for them to carry. I stayed in the trailer putting things away. Dad loaded the garage on the back. He also evicted several mice from our bag chairs, that were in the shed. Lost one completely and have damage to another. We hate to kill things but this is enough. The new trailer is surrounded with mouse killer.

It is a long day, but most of the stuff is into the trailer again, and maybe tomorrow we can find our cellar again.

The clan heads to bed pooped at 9:00pm

WEDNESDAY JUNE 16TH , 2004

Ok after several tries, I have not been able to find a TV that will fit in the new trailers entertainment center. The thing is way to thin. The ONLY size tv that will fit is a 13”. Now we still have the 25” from the OLD trailer, this WON’T fit so I have been on a mission to find one that will. Well I finally call “uncle” and purchase a FLAT PANEL TV. Got a great buy off of ebay.

Man talk about spoiled, with this new trailer the kids even have a TV in “their room”.

FRIDAY JUNE 18TH , 2004

The new TV arrives and the boys want to watch it and not the 32 inch, oh well. Picture is great, and why waste it sitting in the trailer, while we are at home.

SATURDAY JUNE 19TH , 2004

Busy day, We head out after I get home from work to check out the site I have reserved at Massasoit State Park, for the maiden voyage of the trailer. The good thing about this place is it is only 5 minutes from home.

It’s a real good thing that Keith had that idea, to check the site, there is NO WAY we could fit our trailer on it. So we proceed to walk around the park and make a list of sites that we can fit on and when we get home I will check them out.

Now it’s off to Walmart for groceries, the Pet store to return the crate that the shelter let me borrow to bring home the cats, some month and a half ago, then to Shaw’s . We get home around 7 have dinner and sit down to watch the Busch race.

Mom didn’t make it past lap 15, zzzzzzzzzzzzzzzzzzz

SUNDAY JUNE 20TH , 2004

DAD’S DAY

Dad gets his cards and his new NEXTEL CUP T shirt

Well not realizing what today was I had agreed with Keith to be taken out for breakfast for “my birthday” since we had other things to deal with the last 2 weekends. I guess I should take him out for Dad’s day in about 2 weeks ;).

We head to the restaurant, only to find it has been closed L. It was a NASCAR themed place and I had been looking forward to it . Ok to plan B. it’s off to Friendly’s and then to the local Flea Market.

I spend quite a bit of $$$, but get some great buys. The boys end up with a few treasures too.

The rest of the day is quiet and enjoyed by all.

MONDAY JUNE 21ST , 2004

IAN DR Z. (ORTHOPEDICS) IN BROCKTON

I pick up both boys at school, Ian is having his 4^th grade picnic, luckily it is all but done, I wouldn’t want him to miss that. And we head back to Brockton. We arrive in plenty of time, and are even taken into the room 20 minutes prior to our appointment time. WOW!!!

We see Dr Z. and he looks at the MRI from a week ago. He seems to think that the size has not changed. (I think it has, but I am no expert) now the next question is. How is the bone handling this weak spot?

He says the bone has a container like pocket around the weak spot, if this walls of this pocket are strong then we are back to wait and see. If the walls of the pocket are weak, then the weak spot will have to be removed, and a bone graft done from his hip and possible a pin, or rod to hold it together, while it heals.

Ok if this is how it is, how do I tell Ian, (who has been absolutely a trooper though all this) that his leg, (that doesn’t hurt mind you) has to be fixed via surgery.

1^st thing that has to be done is another CT scan, this one being 3 dimensional, to check the walls of the pocket. And we will go from there. I tell the girl making the appointment for us, to just let me know WHEN to be there, no need for phone tag. Is this ok? Type of stuff. Just say NOW and we’ll be there.

Ian currently has a nasty cold and has been taking cough and cold medicine every 4 hours or so, poor guy can’t breathe or sleep very well. I hope it breaks soon.

I emailed Dr Susan to see if she had the results of the Von Will test, got em. The bad news is that they went up. So we can only go down once every 4 weeks on the Prednisone. Fooey.

	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
7-9-04 / Fri	8
NORM		4-175	3.0-12	5.0-150	110-295	2.0-40	3.0-30

WEDNESDAY JUNE 23RD , 2004

LAST DAY OF SCHOOL – IAN’S 4^TH GRADE GRADUATION @ 0930

Keith and I put the boys on the bus “together” for the last time, meaning the boys will be in different schools next year and therefore on different buses and schedules. Dylan is bummed because HE has a full day of school and Ian only has to go till 11:00. ahhh well them’s the perks of “graduation”

Keith and I get ready and head to the school, Ian has drawn us a map to show us where to sit, so that we can see him. He did a great job, we are “right at” the door where they enter the gym. He is the Massachusetts Flag Bearer by virtue of his last name and being the 1^st one in line.

They come in singing and of course Mom is in tears, the guy has been through so much this year and he made it with all A’s an B’s and a smile on his face.

Here he is waiting to lead this side of the Graduation carrying

The state flag. Hmmmmm looks pretty happy to me.

ß PS that man is his Teacher Mr. B.

Here is the actual “graduation”

Now here is the proud Graduate. All done with school

Until September

When we return to the car, Dad gives him his “graduation” gift. A Buster Blader

Yu-Gi-Oh card, he found it at the flea market on Sunday and he loves Yu-Gi-Oh.

Dad and I took photo’s an video of the event and then after Ian returned from his classroom, we headed for home to drop Dad off and Ian and I headed to the Emerald Square Mall so that I could get a poster framed. It is a photo of Daytona International Speedway. I absolutely loathe the “artwork” the trailer had in it, and plan to use this to replace it.

I had expected to be able to pick it up, before leaving the mall, but no such luck, they were busy and taking inventory, I’ll have to return tomorrow. But Ian and I wander the mall for a while we find a Build a Bear Workshop and buy some clothes for the animals they made at Wal-Mart in Maine last summer.

We also go to a video game store and I get a new game for each of the boys. Ian chooses Super Smash Brothers Melee. While we agree to get Dylan the Harry Potter and the Sorcerer’s Stone. Video game.