update

October 14, 2005

LoL I have three enbrel 50mg shots in my fridge too, I just dont know what

to do with it

October 14, 2005

Hi Helen,

I'm as guilty as you, or maybe worse, for not reading much these last

few months. Sometimes, you just need a break from it all.

I'm sorry to hear that Nick is just not 100% with Enbrel. I pray that

remicade does a better job and he's moving in the right direction

again soon. If only you could get a DNA sample done for Nick and the

magic drug for him would just pop out at you (like the doc at the

conference was talking about). I hope things go well with remicade.

Is it today he gets his first infusion?

Stacia and Hunter 9 systemic, uveitis

October 14, 2005

--Hi Stacia..

its good to hear from you!!!.. yea, Nicks 1st remicade infusion is

this afternoon at 2pm. I have to admit I am a little nervous. Nick

seems to be taking it all in his stride. Ill pick him up early from

school and take him to pick out a new dvd to watch while we are

there and then we will do lunch before heading to the hospital. I

wish the enbrel had worked, it was great in the begining but was

slowly stopping being so effective. I now have $1500 worth of enbrel

still in my fridge. I WILL NOT throw it away, so I will have to find

someone to give it to.

I heard from the genetists office this week, they should be able to

see by early spring!!!! LOL

Hows Hunter doing these days???

hugs Helen and (8,systemic)

- In , " staciar101 " <staciar@c...> wrote:

>

> Hi Helen,

>

> I'm as guilty as you, or maybe worse, for not reading much these

last

> few months. Sometimes, you just need a break from it all.

>

> I'm sorry to hear that Nick is just not 100% with Enbrel. I pray

that

> remicade does a better job and he's moving in the right direction

> again soon. If only you could get a DNA sample done for Nick and

the

> magic drug for him would just pop out at you (like the doc at the

> conference was talking about). I hope things go well with

remicade.

> Is it today he gets his first infusion?

>

> Stacia and Hunter 9 systemic, uveitis

>

October 14, 2005

Best of luck for smooth sailing this afternoon!!!! What dvd are you

going to watch?

Hunter pulled out of his summer flare with out any further episode.

His last bloodwork a couple weeks ago was back to normal and his eye

exam yesterday was also uneventful, thankfully. Actually, most of the

asterisks are gone on his bloodwork except for the anemia. We'll do

more thorough anemia testing at next blood draw. Thanks for asking

and I hope to be more active here for a while.

I'm sure some one here will be willing to take that enbrel off your

hands for you!!!

Stacia and Hunter 9 systemic, uveitis

October 17, 2005

Stacia - I am so glad to hear that Hunter is doing better! What

wonderful news!!!

Alia and Caroline, age 3, poly and uveitis

________________________________

From: [mailto: ] On

Behalf Of staciar101

Sent: Friday, October 14, 2005 11:35 AM

Subject: Re: Update

Best of luck for smooth sailing this afternoon!!!! What dvd are you

going to watch?

Hunter pulled out of his summer flare with out any further episode.

His last bloodwork a couple weeks ago was back to normal and his eye

exam yesterday was also uneventful, thankfully. Actually, most of the

asterisks are gone on his bloodwork except for the anemia. We'll do

more thorough anemia testing at next blood draw. Thanks for asking

and I hope to be more active here for a while.

I'm sure some one here will be willing to take that enbrel off your

hands for you!!!

Stacia and Hunter 9 systemic, uveitis

October 31, 2005

, I'm so glad that the surgery if over for Annika and now maybe you

and she, well the whole family will get some much needed rest and I wish you

well with hook up.

F., Kansas

Cochlear Implant

N24C 8/02

3G 10/02

Sensorineural hearing loss, late deafened

Update

> Okay, I am finally home for the night. So now can get an email out to

those of you who are wondering. Annika's surgery went fine on Friday

evening. We left our little girl in the surgery area about 3:25 and saw the

surgeon around 6:25-so basically 3 hours but I can't say for sure whether

she was in surgery that whole time(don't ask another confusing story but

believes it is just someone who didn't know what he was doing in

charge of informing families). Dr. Rimmel said everything went fine. He

was able to put the new one in and now the old will be sent in to be

dissected. The good news is that her right ear looks good. It was her ear

tube pulling out(we saw blood coming out of the ear on Wednesday) and they

did check and her eardrum is healthy so she is now without a tube on the

right ear. The implant is on the left so we will have to wait to see what

happens with that tube.

>

> The worst part was that Annika became pretty nauseated after surgery so by

Saturday a.m. when the resident came in she had not kept anything down at

that point. Which meant that we got to stay another night. I was okay with

this because really she just layed in bed and either watched TV or slept.

We were able to shut off the IV finally around supper time yesterday and she

woke up this morning and started to climb the walls!! Nothing was keeping

her in that bed and when Dad and her brother came to pick us up she was

ready to go!!!

>

> To say that this was an easy experience that would not be true. Annika

knew exactly where she was the minute we went back into the pre-op area. We

had to fight with her just to get the pj's on her. She refused to let them

take her vital signs and since they did not want to make her more upset she

did not get them done. I can tell you that there was no doubt from the

screams heard that she was very healthy at the time. She got to go to the

playroom and that was a good thing until they had to give her the little bit

of oral sedation so that Mom and Dad don't have to go back into the surgery

area with her. She was already feeling the effects of the dose when we put

her on the bed to be rolled into surgery. Of course here is Annika,

partially sedated and all, kicking her leg off of the bed and saying, " no,

no, no. " At least when they wheeled her off she wasn't crying but she was

still telling them she wasn't going with them. They did allow her to keep

her right processor on until they had her back in the surgery suite. I can

say that this probably helped a lot.

>

> Now Annika continued to be a non-compliant patient when it came to her

vital signs during her whole hospital stay. She was usually very good and

took her medicine without much fuss. Though one time yesterday I finally

told her that Dr. Rimmel really wanted her to take the medicine and then she

consented to take it. I don't know what pull Dr. Rimmel had at the time but

at that point I was taking what I could.

>

> Today she has continued to feel and act very much like her normal self.

The only thing that I noticed is that we were coming back from dropping off

a vehicle tonight and she was looking for her blanket. She had become very

attached to her blanket the last few days and must have started to miss it.

>

> Well, that is about it. She will have to go back and see the surgeon by

the end of this week or the beginning of next and then hookup will be in

about 3 weeks.

>

> Thanks to everyone for all the prayers and support. It is all over and

now we wait for hookup.

> Mom of 4

> Marcus 15

> 13

> Jon 11

> Annika 3

> Bilaterally implant 3/1/04

> Hookup 3/25/04

> re-implanted left side 10/28/05

> spastic diaplegic CP

>

December 5, 2005

Good news Deb! Glad you're feeling relief.

deb

GingerMomi@... wrote:

With all the problems I've been having since Tuesday night I decided to go

for an unfill today. The doctor is out of town until next week but the

physician's assistant decided to do a complete unfill and let things rest! What

a

relief! I have an appointment with the doctor on December 19th and if

everything

is okay he'll start filling again! She said he probably won't go quite as

high this time (2.2) but that's fine with me, I was always a little tight but I

dealt with it. On another great note, I lost 20 pounds since September's

fill! Thanks for all the support!

~Deb

December 5, 2005

Great that you feel better! But you might give your poor stomach more

chance to heal than just a couple weeks.

I'd suggest at least a month before you begin to refill very slowly -

and then only if you need fills. you want as small a fill as

possible, not the largest one you might be able to get away with. .

There is no rush to refill, and if you start before your stomach has

had a good rest, you 'll just have to go through this cycle again -

it's not uncommon. Just a suggestion1 Sandy R

>

> With all the problems I've been having since Tuesday night I

decided to go

> for an unfill today. The doctor is out of town until next week but

the

> physician's assistant decided to do a complete unfill and let

things rest! What a

> relief! I have an appointment with the doctor on December 19th and

if everything

> is okay he'll start filling again! She said he probably won't go

quite as

> high this time (2.2) but that's fine with me, I was always a little

tight but I

> dealt with it. On another great note, I lost 20 pounds since

September's

> fill! Thanks for all the support!

> ~Deb

>

January 28, 2006

Well congrats on the acceptance. Now you can pick and choose what school you

want. That's great news. Sorry to hear about the other stuff...that GI testing

crap is no fun at all. Been there and done that. I have a double system Kidney

and it's caused me many many problems in the past. Good luck with hun!

Lorilee

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

Ken 47 {PolyRA}

6 {Systemic JRA},

Kayla 15 {Healthy Thank God}

18 {Asthma}

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

-------------- Original message --------------

From: Salvucci <lisa_salvucci@...>

I had an endoscopy today for the stomach problems and apparently I will

be going through all the GI testing I went through prior to the first

surgery (pH probe, monometry test, gastric emptying) because something

might have been damaged from the surgery or the paralysis that had I

already had in my GI might have worsened, I am truly not looking forward

to that. The arthritis hasn't been to hot either, I seem to be going

through a flare again. I don't see my rheumatologist until Feb 16th and

dont have my next Remicade infusion till Feb 17th. On a happier note I

found out this morning on the way to the hospital I found out that I was

accepted into Sac State University! So far I have gotten into three of

the five schools I applied..Only two left to hear from.

Lots of Love

January 28, 2006

Hi :

Sorry to hear you are not doing well:( I know how hard the whole GI testing

was for you before. I pray you get some answers and relief soon.

Congrats on Sac State! That is awesome news.............3 out of 5 so far.

You just might have to choose 1 out of 5! How wonderful for you to have

your choice.

Tke care.

Patty

January 28, 2006

Hi ,

I am sorry to hear that you will have to go through those tests. I feel for you

and will be thinking of you.

(Poly 35)

>

>I had an endoscopy today for the stomach problems and apparently I will

>be going through all the GI testing I went through prior to the first

>surgery (pH probe, monometry test, gastric emptying) because something

>might have been damaged from the surgery or the paralysis that had I

>already had in my GI might have worsened, I am truly not looking forward

>to that. The arthritis hasn't been to hot either, I seem to be going

>through a flare again. I don't see my rheumatologist until Feb 16th and

>dont have my next Remicade infusion till Feb 17th. On a happier note I

>found out this morning on the way to the hospital I found out that I was

>accepted into Sac State University! So far I have gotten into three of

>the five schools I applied..Only two left to hear from.

>

> Lots of Love

>

January 30, 2006

Sorry to hear about the GI stuff you have to go through. I'll keep

praying it goes ok with minimal discomfort for you. Congrats on the

college news!! Which one do you think you will accept? Good luck,

Michele (18,spondy)