Re: Juho's news (long, sorry)

[Guest guest]

Soili:

Oh my, you sure are a brave woman! You are so courageous to foster the

children and give them a stable, good home.

I am so sorry that Juho continues to have problems. When did he start the

lueflonamide? I am on it myself and have had excellent response (I have

adult onset RA). It did take a few months to start working, though,

before I got the full benefit.

Keep in touch when you can, and again, it was so good to hear from you!

and Rob 15 Spondy

On Sat, 31 Jul 2004 07:13:42 -0000 " soilimar2000 "

<soilimar@...> writes:

,

I truly hope Rob's condition will respons to treatment, whatever it

is. Luckily, there are options even if it proves to be serious. We'll

keep Rob in our prayers as well. He is a very brave young man.

I haven't been able to post or even read the posts for some time

because we are currently fostering 6 kids under the age of five (in

addition to the ones we already had) and they have taken all our time

and energy.

Juho (our bioson 9 yo, who has extended pauci jra) had trouble with

his knee all year, and it was injected four times in a row (within 10

weeks, and mind you, he wasn't sedated once, since he loves playing a

hero for some reason...). It seems now the injections have finally

done the trick, the knee looks better now, but we still might have to

see an ortho in August, since the knee seems to have a lot a dry

synovitis (can be seen in ultrasound) and it's been there for a long

time. The knee lacks full extension.

We were pretty satisfied when the knee got better, since this was the

only joint he's had trouble with recently. He's now on leflunomid,

methotrexate, hydroxchlorocine and NSAID (when needed). BUT just this

week when I tried to hug him, he just jumped and went " aouch " . His

right shoulder was visibly swollen and very tender. When I asked him

to move it, he couldn't even lift his arm. I asked why didn't he say

something and he said: well, I didn't really notice it 'till this

morning. So it really came fast. Now he's having an MRI of the

shoulder in August 11th when he has his next visit. We should leave

for holidays in aug.18th, so I hope he'll be out of the hospital

before that...

Ok must run now (there's a crisis situation among the toddlers over

legobricks...) but I wish you all a good day.

Hugs,

Soili (mom to Juho pauci ext and Juha poly)

[Guest guest]

,

thanks. I don't know about being brave, more like being a little bit

crazy...

About Juho's leflunomid. He's been taking Arava since may 2003 so it

should have worked by now, and it has, too, he's improved. They still

wanted to put methotrexate back in april 2004, with Arava, to see if

they'd be more effective together. And they still wanted to postpone

giving him TNF-inhibitors (Enbrel or Remicade) because Juho's illness

doesn't seem to be very aggressive but rather " creepy " instead. Also

our rheumy (whos' my also my boss) told me flat out he is afraid that

a big flare will come one day, and he wants to have some weapons left

in his back pocket...

Now Juho always seems to have one joint that's giving him trouble.

That's why he's been treated aggressively with local injections,

hoping that he doesn't need more meds. But f.e. his hips (that use to

be horrible) have been just fine for a long time now.

Soili

[Guest guest]

Soilimar, oso good to hear from you! it has been too long!

I am sorry to hear Juho is having shoulder involvement, But the trooper

he is, I know he'll do just fine!

It is that kind of strength in these kids! that makes me really

appreceiate all that I can do. And when ever I get an extra ache, I just

think of these kids and just take that next step forward!

They are my HERO'S! and I am proud to be Uncle Rusty to all.

It started as a joke with the name Rusty O'Limbs and then

my little buddy Larson gave me the title Uncle Rusty!

Well during the Conference as I sat pool side, and heard the greeting,

" Uncle Rusty " from the kids and parents alike! I just want to tell you

all....

It made an Old mans heart feel MIGHTY GOOD!

And Soilimar, I will one day, make that trip to have that cup of coffee

with you and your husband! and meet that young Champion of yours!

Many Hugs Prayers and lots of Love to All

Uncle Rusty O'Limbs

p.s. Thank you! Georgina for being here for us all. and for this list

that has giving me a world wide extended family!

Hugs Gigi! Kayla and ...