Caroline Update

[Guest guest]

Hello All! Caroline's surgery went really well. Our only glitch was the

anesthesia, or I guess the anesthesiologist. He didn't really explain to

Caroline what was going to happen. They had her put some blueberry chap

stick on the inside of the mask for scent. When she was done, I thought they

were going to explain what was happening, but instead he just put the mask

right up to her face. She started kicking and crying. It was very sad. Last

night when we were reading books she said to me " The doctor had me eat

blueberries and then I cried " . I was practically in tears! The surgery went

great though and the ENT said her ears were filled with fluid, so it was a

good thing we got them put in again.

We also saw her rheumy today. She is starting to flare again - mostly her

knee's. Her rheumy said she wished she could have been there Friday because

she would have injected it again. For now, we are restarting Enbrel and

Methotrexate and keeping her on Prednisone. We go back in a month and if her

eyes and joints are not doing any better we are adding Cyclosporine.

I am SOO far behind in posts, but I will respond shortly!

Alia and Caroline, age 2, poly and uveitis

[Guest guest]

Thanks Stacia. It has been a long few days. I am tired beyond exhaustion. I

have so much work on my desk I can't even see strait. I am trying to finish

things up here in the office so I can work from home the rest of the week!

On top of everything else, we are closing on our new home on Friday and we

still have a ton of packing to do! I guess that will all have to wait!

Alia and Caroline, age 3, poly and uveitis

Re: Caroline Update

Alia,

Oh geez how I'm sorry our thoughts and prayers didn't work here for

Caroline. I can only continue to pray for the long road ahead with

the whooping cough, and now for you too, and the pregnancy, oh my

geez. We'll be with you spiritually.

Stacia

[Guest guest]

Hi .... I think that might be our next step, but who knows. When her

neck first became involved we started Enbrel, but that obviously didn't

work. I know we still have some room to go up in her Cyclosporine and her

Methotrexate, but we have never been successful increasing her MTX beyond

it's current dosage. Dr. Akin said that possibly we can re-start Enbrel at a

very low dosage, but who knows. I guess we'll wait until next week to find

out.

We haven't seen the article, but people keep telling me it's great! I wonder

where my copy is??

Alia and Caroline, age 3, poly and Uveitis

Caroline Update

It's been awhile since I have posted, but I thought I would let everyone

know that we have totally tapered off the oral Prednisone. It's been a

week

now since her taper and already she is showing signs that things aren't

good. Her little neck and knee are really bothering her. She has lost

some

range of motion in her neck. She can only look down really now. She has

to

move her shoulder's to see side to side and has to completely arch her

back

if she wants to look up. We have an appointment with her rheumy next

Friday

so we are just giving her Tylenol for now until then. Not sure what else

we

can add for her. I really don't want to see her going back on the

steroids.

It's been 16 long months of being on them and I was truly hoping this

would

be it for her!

Hope all is well with everyone. I am weeks behind in the posts, but I

will

try to catch up!

Alia and Caroline, age 3, poly and Uveitis

________________________________

[Guest guest]

--Hee hee..

Guess he aged overnight!!!! i guess I didnt hold my shift key down!!

too funny

Hugs helen and , the old guy

- In , bncknwurnumber@a... wrote:

> wow is old.. lol 97

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