Tracey & Madi

July 9, 2006

Tracey,

You had said that you were planning to be in Salina for the Family Fun Day.

I was just wondering if you were still planning to be there and when you will

be going. My girls and I will be going up on Friday afternoon. I talked to

Valarie at the AF in Wichita and she said that there are about 10 families

signed up to go. I hope we see you all there.

Veri

July 10, 2006

Veri,

Yes we are still planning on being there-we're going to drive up in

the morning.

Tracey

January 4, 2007

Tracey,

I am so glad you were able to get in quickly with him and more so that you

are happy with how he is going to treat Madi. I pray all goes well with Madi

and that you have things under controll soon. I was not sure if I had missed

your post on the new rheumy or if you had not done one. We have been so very

busy thorough the holidays. I have now taken on another parttime job so am

now going to be working 60 to 65 hours a week for a few months. I try to read

the posts but sometimes when there are one or two hundred there I just have to

delete them and pray that I have not missed something that I really need to

read. We will probably look into seeing a new rheumy this year. Even though

Jaye is doing well I am just not pleased with the current one.

Veri & Jaye

January 4, 2007

Hi Veri,

I must have forgot to post here about our new rheumy experience-

sorry. Madi had an appt. mid Dec. and the hospital was wonderful!

The rheumatology dept. is kind of tucked back in an odd area, but

everyone was really nice and helpful to get us there, and everyone we

came in contact with was great. (Nobody seemed to detest there job

or make us feel like we were wasting their time.) We spent over 2

hours talking with the rheumy-which was great-he answered all our

questions, gave us the scenario of what he would have recommended if

he would have treated Madi from the get go, and went over what

options she has now to get her arthritis under better control. He

even actually manipulated her joints-wow! Obviously the first visit

is always more of a detailed appt., but I am much more comfortable

talking with him, and having the option to discuss options for the

future. After our appt. with Dr. L later that week, we decided to

switch to the new rheumy. So after another phone call-which I

actually spoke to the dr. again-and it only took 1 call, not 3 to

figure it all out, we upped her pred and mtx and just had labs done

last week. I'm guessing we'll try upping the mtx one more time and

if that doesn't work then add enbrel to the mix. (And then maybe a

joint injection or 2 or 3 if need be.) And just as an added bonus,

we received a cc 2 page letter that the new rheumy wrote to Dr. J

updated him on what we discussed with him and what his

recommendations were and so on. It was so nice to know that we are

all on the same page! So all in all it was a very good appt., glad I

finally got the guts to get the " second opinion. " I would tell you to

check them out if Jaye ever has anymore problems-I think

takes her daughter to the other rheumy in the same hospital.

I'm also hoping that Janet & can check them out too if they are

having the same sort of difficulty as we were. So that's it in a

nutshell. Thanks for asking, and I'm glad to hear Jaye is

continuing to do well.

Tracey & Madi (22mo, systemic)

>

> Tracey,

>

> I was wondering if you ever went to see the new Rheumy? I was

thinking that

> you had said you were going to get in before the end of the year

but am not

> sure. And then I do not remember seeing you post about the new

doctor. I was

> just wondering what you thought. I noticed in a post tonight that

Madi has

> swollen joints again along with the rashes and fevers. I am sorry

to hear that.

> She is such a sweet girl.

>

> Veri & Jaye 12 poly but doing very well with everything now.

>

January 6, 2007

Hi Tracey!

Oh, I am soooo glad to hear that the appointment went well!!! I had been

meaning to ask you about it and so I am glad that Veri did it for me. Yes, the

rheumatology department is kind of stuck back in the corner! I always thought

that was strange. Are you going to stay with Dr. Lasky? Those letters from the

rheumy to the pediatrician are wonderful. Most of the doctors at CMH do that. I

like to keep them in a file then take them when I see other doctors. (like Ortho

or Pulmonology) Then, instead of the dr having to look it up I can just whip it

out and have it ready. I have gone nuts with the whole Medical Records binder. I

made a specialized one for Elaney then Elyssa wanted one. So, now we have two. I

even added blank paper and a pocket for markers so the kids can color during the

appointment. My husband tried calling that 800 number but we did not know who to

ask for. I am and have always been horrible with names! I know your name and

Madi's name and I can see the faces

of your husband and sons but just not their names. Sorry. We just got the

COBRA info in the mail today and it will cost $1200 a month!!!!!!!!! Yikes! I

hope my parents do not change their minds about paying for 1 or 2 months of it!

I have been working with CMH and they are really helpful. They may be able to

" erase " our past bills that we have been paying on. As for insurance, we may do

COBRA for a month then go to Health Wave. It will take us a month to get signed

up for that. Health Wave is for uninsured children. When you were at CMH did you

go into the hospital's cafeteria? My kids LOVE it. It has become a tradition

that we go there when we have an appointment. Well, let me know when your next

appointment is and maybe we could meet you there or something.--- &

Elaney

ztaimw <nsigns@...> wrote: