update

[Guest guest]

Oh, its a feeling alright! It seems to have eased up a bit in the last few days

so I am trucking on!

>

> >

> >

> > Ok, I got sleeved on 9/10/10. I have had alot of ups and downs. The day of

> > surgery was great - I felt great, no problems. The next couple of days were

> > a little rough. I had a lot of pain in my arms - but Dr. Campos gave me a

> > shot of a muscle relaxer which really helped a lot. Physically, I have felt

> > pretty good - incisions are healing well, not much pain and no nausea. I had

> > a rough time getting protein in which I know is normal. The protein shots

> > from Walmart are a good source, but I couldn't do them because they were

> > sickening sweet.

> >

> > My main issue is hunger. I have been really, really hunger - and I don't

> > think it is head hunger because my stomach rumbles. I started eating egg

> > drop soup which was really good for me and it held off the hunger pangs. I

> > know that it will get better as each day goes on. I am thankful that I don't

> > have to deal with any nausea.

> >

> > On the bright side, I have lost 16 pounds (yay!). I know that once I get to

> > eat denser food, the hunger will be alleviated. I am hanging in there!

> >

> > As for going to Dr. Aceves for my surgery - I wouldn't change it for

> > anything! He and his staff are wonderful and you get treated really, really

> > well. When my arms were hurting so bad, they were right on it and made sure

> > I was taken care of.

> >

> > Take care everyone!

> >

> >

> >

> >

> >

>

[Guest guest]

Amy,

I just read your update. I know that you are overwhelmed. My kids don't have

systemic, so I have no advice. I just want to send you hugs and prayers. I

hope the meds work well. I am very glad that it is started. Praying for relief

for Avery.

Audra

14 poly 07

Peyton 12 poly 08

>

> Friday we got the rilonacept. Wednesday the pharmacy company called me and

said

> my copay was $600 a week and I almost passed out. I got off the phone crying

[Guest guest]

Prayers that the Rilonocept will work quickly and very well for Avery. Just

think now, you will have the deductible met for the year by the end of the

month. It seems for us each year that we have always met our deductible by the

end of the second month of the year for Jaye. Not really a good thought

but at least you will know where it is and be able to try to plan for it. Will

they take any sort of payments? I always try to find the positive in things. And

with this your deductible will be to one place and not have a dozen places

sending you a bill. You are in my thoughts Amy both you and Avery. Glad you are

home and I hope you get to stay there for a long time. Tell Avery Happy

Birthday a little belated from one of your new JRA Friends.

Veri & Jaye 16 poly

Re: update

Amy,

I just read your update. I know that you are overwhelmed. My kids don't have

systemic, so I have no advice. I just want to send you hugs and prayers. I hope

the meds work well. I am very glad that it is started. Praying for relief for

Avery.

Audra

14 poly 07

Peyton 12 poly 08

>

> Friday we got the rilonacept. Wednesday the pharmacy company called me and

said

> my copay was $600 a week and I almost passed out. I got off the phone crying

[Guest guest]

Thank you Audra!

Amy

________________________________

From: audra <wynhama@...>

Sent: Sun, October 10, 2010 7:54:00 AM

Subject: Re: update

Amy,

I just read your update. I know that you are overwhelmed. My kids don't have

systemic, so I have no advice. I just want to send you hugs and prayers. I

hope the meds work well. I am very glad that it is started. Praying for relief

for Avery.

Audra

14 poly 07

Peyton 12 poly 08

>

> Friday we got the rilonacept. Wednesday the pharmacy company called me and

>said

>

> my copay was $600 a week and I almost passed out. I got off the phone crying

[Guest guest]

Veri I am so relieved about the oop max! I am a little worried because my

husbands job is changing ins again this year but I am so not going to worry

until I have to. I have the money for the oop for next year, if it stays the

same, in the bank and we can use our flex money too. I do so much better with

having a plan. lol

Amy - Avery 17 systemic

________________________________

From: " veristroud@... " <veristroud@...>

Sent: Sun, October 10, 2010 8:25:13 AM

Subject: Re: Re: update

Prayers that the Rilonocept will work quickly and very well for Avery. Just

think now, you will have the deductible met for the year by the end of the

month. It seems for us each year that we have always met our deductible by the

end of the second month of the year for Jaye. Not really a good thought

but at least you will know where it is and be able to try to plan for it. Will

they take any sort of payments? I always try to find the positive in things. And

with this your deductible will be to one place and not have a dozen places

sending you a bill. You are in my thoughts Amy both you and Avery. Glad you are

home and I hope you get to stay there for a long time. Tell Avery Happy

Birthday a little belated from one of your new JRA Friends.

Veri & Jaye 16 poly

Re: update

Amy,

I just read your update. I know that you are overwhelmed. My kids don't have

systemic, so I have no advice. I just want to send you hugs and prayers. I hope

the meds work well. I am very glad that it is started. Praying for relief for

Avery.

Audra

14 poly 07

Peyton 12 poly 08

>

> Friday we got the rilonacept. Wednesday the pharmacy company called me and

said

>

> my copay was $600 a week and I almost passed out. I got off the phone crying

[Guest guest]

Hi Amy,

Thank you for posting an update! I've been thinking of you guys and checking

your blog and the boards. Oh man, I'm so " with " you going through all of this.

Poor Avery has really had a tough time with this acute onset! I'm so happy you

were able to take him home. I can understand his fear of leaving the hospital

but you are only a phone call away if you need to return. The road has

certainly been bumpy and scary for him. I hope he had a good time at the

belated birthday dinner. It certainly has been a long month for you as well, so

I imagine those tears you shed were a mix of lots of emotions!

Bummer about the pulse not bringing the fluid down! And is the abnormal EKG

tied to the fluid? Did they say why the pulse didn't help, or do they expect a

delayed response? Hopefully continued oral prednisone will work on that. I

think I've read that some systemics can always have a small fluid around the

heart, scary as that is to me. just told me today that she often wakes up

with an ache in her chest area, but it goes away after she takes the

prednisone?! I'm not going to go there tonight, but will mention it to the

Rheumy.

I am praying the Rilonocept will work as quick as possible to stem the disease

process. It's great that you were able to get that approved, despite the

challenging process you had to go through. I identify with the ups and downs of

that as well. And getting the dosing correct with a pharmacy that has never

seen the drug - yup, I get the stress of that. I never knew what a " loading

dose " was before last week but had to learn quickly to deal with the kineret

vials. Sometimes -actually oftentimes - I feel overwhelmed by the awesome

responsibility of what we as parents have to learn and understand in order to

manage this disease. But apparently God thinks we can deal with it so I'm doing

my best.

My best wishes and hope to you and Avery, and thoughts to your husband and

younger son as well. It's an upheaval for the whole family, but I hope you can

get a smoother road very soon.

nn

>

> Friday we got the rilonacept. Wednesday the pharmacy company called me and

said

> my copay was $600 a week and I almost passed out. I got off the phone crying

> because there is now way we could afford that. Thursday I called the

insurance

> and found out that it went toward our out of pocket deductible which is only

> $1750 and we can figure that out. It took 6 hours and 2 supervisors to get

hold

> of the benefits woman at tthe pharmacy company and she tells me oh I didn't

tell

> you that part? No if you had I wouldn't have hung up crying and had to wait

> till the ins co opened the next day! So the drug shipped thursday and was

> supposed to be at the hospital friday by 11. At 11:15 I called the pharmacy

> company and they tracked it and it got to the hospital at 9:37. It took about

> 45 minutes but my nurses found it and had it in the room. Hospital pharmacy

> had to check it, I think they just wanted to see it. lol She'd never seen it

> before. By 2 they were showing me how to mix it and then I gave him his first

2

> shots. The rheumy came in twice to reassure me the dose was right and that we

> were doing 2 shots at first. The intern called in the rx wrong so it didn't

say

> there was a loading dose. After it was all said and done, I cried. I had my

> back to avery I didn't want him to see me but well I know you all know. He'd

> just finished his third pulse and we had to have an echo before we left.

>

> The echo is the same I was really surprised that he still had all the

fluid

> around his heart and am waiting to hear when we need to be seen again about

> that. We also have to be seen for his abnormal ekg. We got home about 8pm

> from the hospital friday night. Avery didn't want to leave he was afraid to.

> That made me sad. Today I had to take Zachery to the Dr for his sore throat

> and runny nose. Then we went to Red Lobster for Avery birthday dinner a month

> late. I cried when they sang happy birthday to him, it's been a long month.

>

> Hopefully the rilonacept will work and we will be done with pulses but i know

> there is a chance we will need a couple more before the medicine is working

all

> the way. OMG the shots are 6k a piece!

>

> Amy - Avery 17 systemic

>

>

>

>

>

[Guest guest]

nn, I feel so unprepared for all of this. I am an on an emotional roller

coaster. People have said to me forever, oh how do you deal with the downs or I

couldn't handle that. OMG that is so easy! lol I mean this is the scary stuff

to me. Now tonight his hands are red and pealing from the finger tips. Last

week I told the rhumy they were pealing and I'd remembered the Dr's kept asking

us if they had and now they are. She said it was when they were thinking

kawasaki's disease and if he had they they would peal from the finger tip not

like they were, then to freaking day they started pealing from under the nails.

And it's thick skin. I am sure it is from the reaction to the anakinra, they

thought he had steven johnsons at the time and heck maybe he did. Oh the dr did

tell me that yes he has MAS but didn't have it any more. So glad I didn't know

that at the time! lol

The abnormal EKG was something found in the hospital and not related to his

illness now. They said there is something wrong with the electrical wiring in

his heart and he might need an ablation. Honestly I have put that in the back

of my mind until we see the Cardo for that. When the did the first echo in the

hospital his heart was fine, no fluid. Then a week or 10 days later they did

another one before we were discharged and he had a moderate amount of fluid

around his heart. The rheumy told me on Friday morning that with all the

prednisone he had it should be gone. Well hours later it was unchanged. I had

asked the nurse if they were going to come give me the report and she said they

would send it to the pedi. Uh that's odd they fellow always talks to me and saw

us waiting for the echo and said he's come up. She called down and got it and

they had our discharge papers ready to I left. I had to take Zachery to the

pedi Sat with a runny nose and sore throat and he asked about the echo and said

he'd get his office on it for me and get us back in with the cardo. He said

they fellow and cardiologist should have talked to me too. One day the nurses

will listen to me. lol

So now he has red pealing hands and is in pain again. That just started and I

think we will be having another pulse before the meds are working good. But the

good thing is we had our birthday dinner and he went to church today! We'll see

about school tomorrow, I doubt it. I have a lot of blogging to catch up on

tonight.

Would you want to share 's onset with me?

Amy- avery 17 systemic

________________________________

From: nn <rosannwinn@...>

Sent: Sun, October 10, 2010 7:12:02 PM

Subject: Re: update

Hi Amy,

Thank you for posting an update! I've been thinking of you guys and checking

your blog and the boards. Oh man, I'm so " with " you going through all of this.

Poor Avery has really had a tough time with this acute onset! I'm so happy you

were able to take him home. I can understand his fear of leaving the hospital

but you are only a phone call away if you need to return. The road has

certainly been bumpy and scary for him. I hope he had a good time at the

belated birthday dinner. It certainly has been a long month for you as well, so

I imagine those tears you shed were a mix of lots of emotions!

Bummer about the pulse not bringing the fluid down! And is the abnormal EKG

tied to the fluid? Did they say why the pulse didn't help, or do they expect a

delayed response? Hopefully continued oral prednisone will work on that. I

think I've read that some systemics can always have a small fluid around the

heart, scary as that is to me. just told me today that she often wakes up

with an ache in her chest area, but it goes away after she takes the

prednisone?! I'm not going to go there tonight, but will mention it to the

Rheumy.

I am praying the Rilonocept will work as quick as possible to stem the disease

process. It's great that you were able to get that approved, despite the

challenging process you had to go through. I identify with the ups and downs of

that as well. And getting the dosing correct with a pharmacy that has never

seen the drug - yup, I get the stress of that. I never knew what a " loading

dose " was before last week but had to learn quickly to deal with the kineret

vials. Sometimes -actually oftentimes - I feel overwhelmed by the awesome

responsibility of what we as parents have to learn and understand in order to

manage this disease. But apparently God thinks we can deal with it so I'm doing

my best.

My best wishes and hope to you and Avery, and thoughts to your husband and

younger son as well. It's an upheaval for the whole family, but I hope you can

get a smoother road very soon.

nn

>

> Friday we got the rilonacept. Wednesday the pharmacy company called me and

>said

>

> my copay was $600 a week and I almost passed out. I got off the phone crying

> because there is now way we could afford that. Thursday I called the

insurance

>

> and found out that it went toward our out of pocket deductible which is only

> $1750 and we can figure that out. It took 6 hours and 2 supervisors to get

>hold

>

> of the benefits woman at tthe pharmacy company and she tells me oh I didn't

>tell

>

> you that part? No if you had I wouldn't have hung up crying and had to wait

> till the ins co opened the next day! So the drug shipped thursday and was

> supposed to be at the hospital friday by 11. At 11:15 I called the pharmacy

> company and they tracked it and it got to the hospital at 9:37. It took about

> 45 minutes but my nurses found it and had it in the room. Hospital pharmacy

> had to check it, I think they just wanted to see it. lol She'd never seen it

> before. By 2 they were showing me how to mix it and then I gave him his first

>2

>

> shots. The rheumy came in twice to reassure me the dose was right and that we

> were doing 2 shots at first. The intern called in the rx wrong so it didn't

>say

>

> there was a loading dose. After it was all said and done, I cried. I had my

> back to avery I didn't want him to see me but well I know you all know. He'd

> just finished his third pulse and we had to have an echo before we left.

>

> The echo is the same I was really surprised that he still had all the

fluid

>

> around his heart and am waiting to hear when we need to be seen again about

> that. We also have to be seen for his abnormal ekg. We got home about 8pm

> from the hospital friday night. Avery didn't want to leave he was afraid to.

> That made me sad. Today I had to take Zachery to the Dr for his sore throat

> and runny nose. Then we went to Red Lobster for Avery birthday dinner a month

> late. I cried when they sang happy birthday to him, it's been a long month.

>

> Hopefully the rilonacept will work and we will be done with pulses but i know

> there is a chance we will need a couple more before the medicine is working

all

>

> the way. OMG the shots are 6k a piece!

>

> Amy - Avery 17 systemic

>

>

>

>

>

[Guest guest]

You are in my thoughts and prayers. Happy Birthday Avery!

Sent from my iPad

On Oct 9, 2010, at 10:21 PM, Amy Spurger <mom2anz@...> wrote:

Friday we got the rilonacept. Wednesday the pharmacy company called me and said

my copay was $600 a week and I almost passed out. I got off the phone crying

because there is now way we could afford that. Thursday I called the insurance

and found out that it went toward our out of pocket deductible which is only

$1750 and we can figure that out. It took 6 hours and 2 supervisors to get hold

of the benefits woman at tthe pharmacy company and she tells me oh I didn't tell

you that part? No if you had I wouldn't have hung up crying and had to wait

till the ins co opened the next day! So the drug shipped thursday and was

supposed to be at the hospital friday by 11. At 11:15 I called the pharmacy

company and they tracked it and it got to the hospital at 9:37. It took about

45 minutes but my nurses found it and had it in the room. Hospital pharmacy

had to check it, I think they just wanted to see it. lol She'd never seen it

before. By 2 they were showing me how to mix it and then I gave him his first 2

shots. The rheumy came in twice to reassure me the dose was right and that we

were doing 2 shots at first. The intern called in the rx wrong so it didn't say

there was a loading dose. After it was all said and done, I cried. I had my

back to avery I didn't want him to see me but well I know you all know. He'd

just finished his third pulse and we had to have an echo before we left.

The echo is the same I was really surprised that he still had all the fluid

around his heart and am waiting to hear when we need to be seen again about

that. We also have to be seen for his abnormal ekg. We got home about 8pm

from the hospital friday night. Avery didn't want to leave he was afraid to.

That made me sad. Today I had to take Zachery to the Dr for his sore throat

and runny nose. Then we went to Red Lobster for Avery birthday dinner a month

late. I cried when they sang happy birthday to him, it's been a long month.

Hopefully the rilonacept will work and we will be done with pulses but i know

there is a chance we will need a couple more before the medicine is working all

the way. OMG the shots are 6k a piece!

Amy - Avery 17 systemic

[Guest guest]

Hi Amy,

New rash, new concern - I'm sorry to hear you are dealing with yet another thing

today! I hope they can figure out what it is. has been getting peeling

on her palms lately, but I think it's from the methotrexate because it always

happens a couple days after that injection. She gets these little wart like

bumps on her palms that are itchy and then they peel a little.

As far as sharing 's onset story - I noticed that on this site you can

search " nn " and it will come up with all my past posts. I started posting

on April 21st about 's onset, and there were lots of helpful posts back to

me from other moms. You might find those posts useful. I can also send you an

invitation to 's carepage if you send me your email address.

I hope Avery is having a better day, despite the new rash.

nn (, 9, systemic)

> >

> > Friday we got the rilonacept. Wednesday the pharmacy company called me and

> >said

> >

> > my copay was $600 a week and I almost passed out. I got off the phone

crying

> > because there is now way we could afford that. Thursday I called the

insurance

> >

> > and found out that it went toward our out of pocket deductible which is only

> > $1750 and we can figure that out. It took 6 hours and 2 supervisors to get

> >hold

> >

> > of the benefits woman at tthe pharmacy company and she tells me oh I didn't

> >tell

> >

> > you that part? No if you had I wouldn't have hung up crying and had to wait

> > till the ins co opened the next day! So the drug shipped thursday and was

> > supposed to be at the hospital friday by 11. At 11:15 I called the pharmacy

> > company and they tracked it and it got to the hospital at 9:37. It took

about

>

> > 45 minutes but my nurses found it and had it in the room. Hospital

pharmacy

> > had to check it, I think they just wanted to see it. lol She'd never seen

it

> > before. By 2 they were showing me how to mix it and then I gave him his

first

> >2

> >

> > shots. The rheumy came in twice to reassure me the dose was right and that

we

>

> > were doing 2 shots at first. The intern called in the rx wrong so it didn't

> >say

> >

> > there was a loading dose. After it was all said and done, I cried. I had

my

> > back to avery I didn't want him to see me but well I know you all know.

He'd

>

> > just finished his third pulse and we had to have an echo before we left.

> >

> > The echo is the same I was really surprised that he still had all the

fluid

> >

> > around his heart and am waiting to hear when we need to be seen again about

> > that. We also have to be seen for his abnormal ekg. We got home about 8pm

> > from the hospital friday night. Avery didn't want to leave he was afraid

to.

> > That made me sad. Today I had to take Zachery to the Dr for his sore

throat

> > and runny nose. Then we went to Red Lobster for Avery birthday dinner a

month

>

> > late. I cried when they sang happy birthday to him, it's been a long month.

> >

> > Hopefully the rilonacept will work and we will be done with pulses but i

know

> > there is a chance we will need a couple more before the medicine is working

all

> >

> > the way. OMG the shots are 6k a piece!

> >

> > Amy - Avery 17 systemic

> >

> >

> >

> >

> >

[Guest guest]

I agree my first doctor told me nothing was wrong. The CT scan also showed no

ctoma. Less than a month later I was hospitalized and underwent emergency

surgery for a very large ctoma. It had destroyed so much. I am almost completely

deaf in that ear now. I wish I had gotten a 2nd opinion. I wanted to hear good

news so when the doctor said no ctoma just an ear infection I was relieved and

did not second guess the diagnosis. Especially with the scan results. The

surgeon said it was quite large and extensive. Made a hole through the canal

wall even. These buggers are a pain can be hidden too so even if you are

cleared if you continue to have problems please do not wait like me go get

another opinion. I am told I may never have hearing in that ear again. :-(

Update

Just a little update on me. My orig ENT sent me to an ear surgeon/specialist who

confirmed a c-toma and wanted to perform radical surgery. I did not feel

comfortable with this, as I am 27 years old/married/w/a 17 month old. I hear

completly fine but started having ear infections last winter.

I consulted a 2nd surgeon that was recommended by my ENT again, for a 2nd/3rd

opinion. I seen this doc. Hearing test is 100% NORMAL in both ears. He does see

a retraction in my left ear, but says my ear overall looks great. So far it is

looking more like a e-tube dysfunction problem. But not sure yet. Even when he

looked at the pathology report from my last CT, he says it does not match up to

a true c-toma.

So, I go this Thursday for my 2nd CT. Last one was in July and had infection

then. Ear is clean now. Then go back to him on the 24th, to review both CT disk.

I am hoping for good news, and that this will be a much more minor fix than

first expected. Either way, I feel much more comfy w/ this surgeon.

Wish all of you well. One word of advice.... If you do not feel comfy with what

a doc is telling you.... don't be afraid to get a 2nd op. I am so thankful to

the Lord that I sure did! :-)

[Guest guest]

Amy,

So glad Avery is doing well on the riloncept! I'm also glad to hear he's got

himself a girlfriend! I love, love stories! Prom is such a fun experience and I

hope they have a blast! I hope you'll post some pictures so we can see how

handsome he looks all dressed up! I hope he continues to feel better and better

each day! 

With Love, (MCTD, 26.. dx 6.5. Four months pregnant and feeling amazing!)

From: Amy Spurger <mom2anz@...>

Subject: Update

Date: Sunday, April 17, 2011, 3:22 AM

 

I haven't been here in a while, I think I have been recovering from our

fall and

winter. Avery is doing wonderful! He had a little flair while weaning the

prednisone and getting a cold but we bumped it a little and he recovered

quickly. We are back down to 10mg of the prednisone again and will wait till

June to start weaning again. He has stopped gaining weight at that dose! lol

He looks so good, and so very healthy. He is finally pain free. It took a

long time for the rilonacept to work all the way but for now that horrible

disease is being controlled. Avery now has a girlfriend! They are so very

sweet together, she has down syndrome too. They have known each other all their

lives but haven't seen each other in years! They found each other on facebook

right before he got sick, she thought he was hot when she saw his picture.

She called him when he was in the hospital and they have talked and chatted

since. He asked her to his prom and she said yes! They are both so excited.

lol Since we live so far out she is coming with her mom for the weekend. They

will stay in a hotel in town. Avery is going to take her on his first date to a

movie the night before. It really makes my heart so happy, it's been a long

road and it's so nice to have this joy. She sends me messages on facebook

telling me she loves my son, life doesn't get any better. It's just so nice to

have this normal. I'm going to try to catch up with everyone.

Amy mom to Avery 17 systemic

[Guest guest]

Amy,

So glad Avery is doing well on the riloncept! I'm also glad to hear he's got

himself a girlfriend! I love, love stories! Prom is such a fun experience and I

hope they have a blast! I hope you'll post some pictures so we can see how

handsome he looks all dressed up! I hope he continues to feel better and better

each day! 

With Love, (MCTD, 26.. dx 6.5. Four months pregnant and feeling amazing!)

From: Amy Spurger <mom2anz@...>

Subject: Update

Date: Sunday, April 17, 2011, 3:22 AM

 

I haven't been here in a while, I think I have been recovering from our

fall and

winter. Avery is doing wonderful! He had a little flair while weaning the

prednisone and getting a cold but we bumped it a little and he recovered

quickly. We are back down to 10mg of the prednisone again and will wait till

June to start weaning again. He has stopped gaining weight at that dose! lol

He looks so good, and so very healthy. He is finally pain free. It took a

long time for the rilonacept to work all the way but for now that horrible

disease is being controlled. Avery now has a girlfriend! They are so very

sweet together, she has down syndrome too. They have known each other all their

lives but haven't seen each other in years! They found each other on facebook

right before he got sick, she thought he was hot when she saw his picture.

She called him when he was in the hospital and they have talked and chatted

since. He asked her to his prom and she said yes! They are both so excited.

lol Since we live so far out she is coming with her mom for the weekend. They

will stay in a hotel in town. Avery is going to take her on his first date to a

movie the night before. It really makes my heart so happy, it's been a long

road and it's so nice to have this joy. She sends me messages on facebook

telling me she loves my son, life doesn't get any better. It's just so nice to

have this normal. I'm going to try to catch up with everyone.

Amy mom to Avery 17 systemic

[Guest guest]

So glad that things are going well for you guys. I know it has been a very hard

road to get there but the sun is shinning on you now. Exciting about prom also.

I hope they have a wonderful time.

My girl is at prom tonight. We want them to grow up but when they start doing

some of that I tend to get nervous and so over protective.

Veri & Jaye 17 poly

Update

I haven't been here in a while, I think I have been recovering from our fall and

winter. Avery is doing wonderful! He had a little flair while weaning the

prednisone and getting a cold but we bumped it a little and he recovered

quickly. We are back down to 10mg of the prednisone again and will wait till

June to start weaning again. He has stopped gaining weight at that dose! lol

He looks so good, and so very healthy. He is finally pain free. It took a

long time for the rilonacept to work all the way but for now that horrible

disease is being controlled. Avery now has a girlfriend! They are so very

sweet together, she has down syndrome too. They have known each other all their

lives but haven't seen each other in years! They found each other on facebook

right before he got sick, she thought he was hot when she saw his picture.

She called him when he was in the hospital and they have talked and chatted

since. He asked her to his prom and she said yes! They are both so excited.

lol Since we live so far out she is coming with her mom for the weekend. They

will stay in a hotel in town. Avery is going to take her on his first date to a

movie the night before. It really makes my heart so happy, it's been a long

road and it's so nice to have this joy. She sends me messages on facebook

telling me she loves my son, life doesn't get any better. It's just so nice to

have this normal. I'm going to try to catch up with everyone.

Amy mom to Avery 17 systemic

[Guest guest]

,

I am glad to see you posting positive. Am so excited for you that you are

feeling amazing with this pregnancy.

Veri & Jaye 17 poly

Update

Date: Sunday, April 17, 2011, 3:22 AM

I haven't been here in a while, I think I have been recovering from our fall and

winter. Avery is doing wonderful! He had a little flair while weaning the

prednisone and getting a cold but we bumped it a little and he recovered

quickly. We are back down to 10mg of the prednisone again and will wait till

June to start weaning again. He has stopped gaining weight at that dose! lol

He looks so good, and so very healthy. He is finally pain free. It took a

long time for the rilonacept to work all the way but for now that horrible

disease is being controlled. Avery now has a girlfriend! They are so very

sweet together, she has down syndrome too. They have known each other all their

lives but haven't seen each other in years! They found each other on facebook

right before he got sick, she thought he was hot when she saw his picture.

She called him when he was in the hospital and they have talked and chatted

since. He asked her to his prom and she said yes! They are both so excited.

lol Since we live so far out she is coming with her mom for the weekend. They

will stay in a hotel in town. Avery is going to take her on his first date to a

movie the night before. It really makes my heart so happy, it's been a long

road and it's so nice to have this joy. She sends me messages on facebook

telling me she loves my son, life doesn't get any better. It's just so nice to

have this normal. I'm going to try to catch up with everyone.

Amy mom to Avery 17 systemic

[Guest guest]

Veri, 

The second trimester has been much easier than the first so far. I was throwing

like six times a day and then 13 weeks hit and all of the sudden I stopped

throwing up. I still get nauseous here and there but nothing like before. My

joints aren't doing too bad either..luckily my husband is willing to give me a

foot rub each night! 

With Love, (MCTD, 26..dx 6.5..four months pregnant and feeling wonderful)

From: Amy Spurger <mom2anz@...>

Subject: Update

Date: Sunday, April 17, 2011, 3:22 AM

I haven't been here in a while, I think I have been recovering from our fall and

winter. Avery is doing wonderful! He had a little flair while weaning the

prednisone and getting a cold but we bumped it a little and he recovered

quickly. We are back down to 10mg of the prednisone again and will wait till

June to start weaning again. He has stopped gaining weight at that dose! lol

He looks so good, and so very healthy. He is finally pain free. It took a

long time for the rilonacept to work all the way but for now that horrible

disease is being controlled. Avery now has a girlfriend! They are so very

sweet together, she has down syndrome too. They have known each other all their

lives but haven't seen each other in years! They found each other on facebook

right before he got sick, she thought he was hot when she saw his picture.

She called him when he was in the hospital and they have talked and chatted

since. He asked her to his prom and she said yes! They are both so excited.

lol Since we live so far out she is coming with her mom for the weekend. They

will stay in a hotel in town. Avery is going to take her on his first date to a

movie the night before. It really makes my heart so happy, it's been a long

road and it's so nice to have this joy. She sends me messages on facebook

telling me she loves my son, life doesn't get any better. It's just so nice to

have this normal. I'm going to try to catch up with everyone.

Amy mom to Avery 17 systemic

[Guest guest]

Well enjoy those foot masages. I keep thinking of you and praying that this will

be a wonderful pregnancy for you. Are you feeling the baby moving? That is such

an exciting time when baby move, it will just make you smile and people will

wonder whats up. Keep us posted.

Veri & Jaye 17 poly

Update

Date: Sunday, April 17, 2011, 3:22 AM

I haven't been here in a while, I think I have been recovering from our fall and

winter. Avery is doing wonderful! He had a little flair while weaning the

prednisone and getting a cold but we bumped it a little and he recovered

quickly. We are back down to 10mg of the prednisone again and will wait till

June to start weaning again. He has stopped gaining weight at that dose! lol

He looks so good, and so very healthy. He is finally pain free. It took a

long time for the rilonacept to work all the way but for now that horrible

disease is being controlled. Avery now has a girlfriend! They are so very

sweet together, she has down syndrome too. They have known each other all their

lives but haven't seen each other in years! They found each other on facebook

right before he got sick, she thought he was hot when she saw his picture.

She called him when he was in the hospital and they have talked and chatted

since. He asked her to his prom and she said yes! They are both so excited.

lol Since we live so far out she is coming with her mom for the weekend. They

will stay in a hotel in town. Avery is going to take her on his first date to a

movie the night before. It really makes my heart so happy, it's been a long

road and it's so nice to have this joy. She sends me messages on facebook

telling me she loves my son, life doesn't get any better. It's just so nice to

have this normal. I'm going to try to catch up with everyone.

Amy mom to Avery 17 systemic

[Guest guest]

And do you know if it is a boy or a girl?

Sent from my iPhone

On Apr 16, 2011, at 9:16 PM, Codianne <lecodianne@...> wrote:

> Veri,

> The second trimester has been much easier than the first so far. I was

throwing like six times a day and then 13 weeks hit and all of the sudden I

stopped throwing up. I still get nauseous here and there but nothing like

before. My joints aren't doing too bad either..luckily my husband is willing to

give me a foot rub each night!

> With Love, (MCTD, 26..dx 6.5..four months pregnant and feeling wonderful)

>

>

>

> From: Amy Spurger <mom2anz@...>

>

> Subject: Update

>

>

>

> Date: Sunday, April 17, 2011, 3:22 AM

>

> I haven't been here in a while, I think I have been recovering from our fall

and

>

> winter. Avery is doing wonderful! He had a little flair while weaning the

>

> prednisone and getting a cold but we bumped it a little and he recovered

>

> quickly. We are back down to 10mg of the prednisone again and will wait till

>

> June to start weaning again. He has stopped gaining weight at that dose! lol

>

> He looks so good, and so very healthy. He is finally pain free. It took a

>

> long time for the rilonacept to work all the way but for now that horrible

>

> disease is being controlled. Avery now has a girlfriend! They are so very

>

> sweet together, she has down syndrome too. They have known each other all

their

>

> lives but haven't seen each other in years! They found each other on facebook

>

> right before he got sick, she thought he was hot when she saw his picture.

>

> She called him when he was in the hospital and they have talked and chatted

>

> since. He asked her to his prom and she said yes! They are both so excited.

>

> lol Since we live so far out she is coming with her mom for the weekend. They

>

> will stay in a hotel in town. Avery is going to take her on his first date to

a

>

> movie the night before. It really makes my heart so happy, it's been a long

>

> road and it's so nice to have this joy. She sends me messages on facebook

>

> telling me she loves my son, life doesn't get any better. It's just so nice to

>

> have this normal. I'm going to try to catch up with everyone.

>

> Amy mom to Avery 17 systemic

>

>

[Guest guest]

Amy,

I have happy tears for you and your boy! So so exciting for you and your son!

Always love to hear the good things. This disease stinks but there is still joy

in life. Hope he has two fabulous dates.

e, mom to 'joe' 24 poly+

From: Amy Spurger <mom2anz@...>

Subject: Update

Date: Saturday, April 16, 2011, 8:22 PM

 

I haven't been here in a while, I think I have been recovering from our

fall and

winter. Avery is doing wonderful! He had a little flair while weaning the

prednisone and getting a cold but we bumped it a little and he recovered

quickly. We are back down to 10mg of the prednisone again and will wait till

June to start weaning again. He has stopped gaining weight at that dose! lol

He looks so good, and so very healthy. He is finally pain free. It took a

long time for the rilonacept to work all the way but for now that horrible

disease is being controlled. Avery now has a girlfriend! They are so very

sweet together, she has down syndrome too. They have known each other all their

lives but haven't seen each other in years! They found each other on facebook

right before he got sick, she thought he was hot when she saw his picture.

She called him when he was in the hospital and they have talked and chatted

since. He asked her to his prom and she said yes! They are both so excited.

lol Since we live so far out she is coming with her mom for the weekend. They

will stay in a hotel in town. Avery is going to take her on his first date to a

movie the night before. It really makes my heart so happy, it's been a long

road and it's so nice to have this joy. She sends me messages on facebook

telling me she loves my son, life doesn't get any better. It's just so nice to

have this normal. I'm going to try to catch up with everyone.

Amy mom to Avery 17 systemic

[Guest guest]

Veri,

No movement yet but I am hoping soon! I can't wait to feel those first

movements. We did get to hear the baby's heartbeat at the last appointment (a

beautiful 165 bpm) and we have our anatomy ultrasound scheduled for May 17th! So

we will find out then whether this baby is a boy or a girl. We really have no

preference but are definitely excited to find out. Thank you for your prayers I

really do appreciate it. As much joy as there has been so far through this

pregnancy I do worry about what if I flare, what if I have to take meds, what

will me having this disease do to my baby and once the baby is born what if I

flare badly. I really do want to breastfeed but I also know my doctor said that

if a flare does happen after the babies birth that most of the medications used

to treat the JIA are not safe for breastfeeding. So we will play it by ear and

hope for the best! Thank you for your prayers!

With Love,

From: Amy Spurger <mom2anz@...>

Subject: Update

Date: Sunday, April 17, 2011, 3:22 AM

I haven't been here in a while, I think I have been recovering from our fall and

winter. Avery is doing wonderful! He had a little flair while weaning the

prednisone and getting a cold but we bumped it a little and he recovered

quickly. We are back down to 10mg of the prednisone again and will wait till

June to start weaning again. He has stopped gaining weight at that dose! lol

He looks so good, and so very healthy. He is finally pain free. It took a

long time for the rilonacept to work all the way but for now that horrible

disease is being controlled. Avery now has a girlfriend! They are so very

sweet together, she has down syndrome too. They have known each other all their

lives but haven't seen each other in years! They found each other on facebook

right before he got sick, she thought he was hot when she saw his picture.

She called him when he was in the hospital and they have talked and chatted

since. He asked her to his prom and she said yes! They are both so excited.

lol Since we live so far out she is coming with her mom for the weekend. They

will stay in a hotel in town. Avery is going to take her on his first date to a

movie the night before. It really makes my heart so happy, it's been a long

road and it's so nice to have this joy. She sends me messages on facebook

telling me she loves my son, life doesn't get any better. It's just so nice to

have this normal. I'm going to try to catch up with everyone.

Amy mom to Avery 17 systemic

[Guest guest]

What a wonderful update! So happy he is doing so well. And a girlfriend and

prom...yay! Life IS good! Thanks for sharing.

& , 7, poly...nystagmus...SPD....

Sent from my iPhone

[Guest guest]

Did she have fun Veri? Their growing up is so bitter sweet. It just goes way

too fast.

________________________________

From: " veristroud@... " <veristroud@...>

Sent: Sat, April 16, 2011 10:42:33 PM

Subject: Re: Update

So glad that things are going well for you guys. I know it has been a very hard

road to get there but the sun is shinning on you now. Exciting about prom also.

I hope they have a wonderful time.

My girl is at prom tonight. We want them to grow up but when they start doing

some of that I tend to get nervous and so over protective.

Veri & Jaye 17 poly

Update

I haven't been here in a while, I think I have been recovering from our fall and

winter. Avery is doing wonderful! He had a little flair while weaning the

prednisone and getting a cold but we bumped it a little and he recovered

quickly. We are back down to 10mg of the prednisone again and will wait till

June to start weaning again. He has stopped gaining weight at that dose! lol

He looks so good, and so very healthy. He is finally pain free. It took a

long time for the rilonacept to work all the way but for now that horrible

disease is being controlled. Avery now has a girlfriend! They are so very

sweet together, she has down syndrome too. They have known each other all their

lives but haven't seen each other in years! They found each other on facebook

right before he got sick, she thought he was hot when she saw his picture.

She called him when he was in the hospital and they have talked and chatted

since. He asked her to his prom and she said yes! They are both so excited.

lol Since we live so far out she is coming with her mom for the weekend. They

will stay in a hotel in town. Avery is going to take her on his first date to a

movie the night before. It really makes my heart so happy, it's been a long

road and it's so nice to have this joy. She sends me messages on facebook

telling me she loves my son, life doesn't get any better. It's just so nice to

have this normal. I'm going to try to catch up with everyone.

Amy mom to Avery 17 systemic

[Guest guest]

That is wonderful to hear! I hope you continue to feel great!

Amy mom to Avery 17 systemic

________________________________

From: Codianne <lecodianne@...>

Sent: Sat, April 16, 2011 11:16:28 PM

Subject: Re: Update

Veri,

The second trimester has been much easier than the first so far. I was throwing

like six times a day and then 13 weeks hit and all of the sudden I stopped

throwing up. I still get nauseous here and there but nothing like before. My

joints aren't doing too bad either..luckily my husband is willing to give me a

foot rub each night!

With Love, (MCTD, 26..dx 6.5..four months pregnant and feeling wonderful)

From: Amy Spurger <mom2anz@...>

Subject: Update

Date: Sunday, April 17, 2011, 3:22 AM

I haven't been here in a while, I think I have been recovering from our fall and

winter. Avery is doing wonderful! He had a little flair while weaning the

prednisone and getting a cold but we bumped it a little and he recovered

quickly. We are back down to 10mg of the prednisone again and will wait till

June to start weaning again. He has stopped gaining weight at that dose! lol

He looks so good, and so very healthy. He is finally pain free. It took a

long time for the rilonacept to work all the way but for now that horrible

disease is being controlled. Avery now has a girlfriend! They are so very

sweet together, she has down syndrome too. They have known each other all their

lives but haven't seen each other in years! They found each other on facebook

right before he got sick, she thought he was hot when she saw his picture.

She called him when he was in the hospital and they have talked and chatted

since. He asked her to his prom and she said yes! They are both so excited.

lol Since we live so far out she is coming with her mom for the weekend. They

will stay in a hotel in town. Avery is going to take her on his first date to a

movie the night before. It really makes my heart so happy, it's been a long

road and it's so nice to have this joy. She sends me messages on facebook

telling me she loves my son, life doesn't get any better. It's just so nice to

have this normal. I'm going to try to catch up with everyone.

Amy mom to Avery 17 systemic

[Guest guest]

Oh, I wish you could not worry about those things. It is just not right.

You need to be able to enjoy every moment of this pregnancy. I loved being

pregnant. I was blessed to not be sick with morning sickness for any of my

pregnancys. I did spend the last three months of my pregnancy with Jaye

on bed rest and then she was born three weeks early but I was not sick. I went

into labor 9 weeks before she was born and knew that if she was born too early

they would have to airlift her to a bigger city. So I spent eight weeks flat on

my back basically except for rest room breaks and doctor appointments. Then when

the doctor said if she was born at that time we would be able to keep her at our

hospital. So I was able to do a little bit of stuff for a few days before she

arrived. But even those weeks when I was down, I did not feel bad and I just

talked to Jaye all the time. It is no wonder I still want to talk to her

all the time and some days she just looks at me and says ok Mom, are you done

yet. I pray that you will be able to breast feed also, it is one of the most

wonderful things that you can do for your baby, the bonding is just amazing. I

was able to with my other kids but Jaye for just a short while and she

developed an allergy to my milk as well as was sick alot so we had to put her on

formula. I regretted having to quit but it was what she needed. 165 beats per

minute sounds pink to me. Keep us informed.

Veri & Jaye 17 poly

Update

Date: Sunday, April 17, 2011, 3:22 AM

I haven't been here in a while, I think I have been recovering from our fall and

winter. Avery is doing wonderful! He had a little flair while weaning the

prednisone and getting a cold but we bumped it a little and he recovered

quickly. We are back down to 10mg of the prednisone again and will wait till

June to start weaning again. He has stopped gaining weight at that dose! lol

He looks so good, and so very healthy. He is finally pain free. It took a

long time for the rilonacept to work all the way but for now that horrible

disease is being controlled. Avery now has a girlfriend! They are so very

sweet together, she has down syndrome too. They have known each other all their

lives but haven't seen each other in years! They found each other on facebook

right before he got sick, she thought he was hot when she saw his picture.

She called him when he was in the hospital and they have talked and chatted

since. He asked her to his prom and she said yes! They are both so excited.

lol Since we live so far out she is coming with her mom for the weekend. They

will stay in a hotel in town. Avery is going to take her on his first date to a

movie the night before. It really makes my heart so happy, it's been a long

road and it's so nice to have this joy. She sends me messages on facebook

telling me she loves my son, life doesn't get any better. It's just so nice to

have this normal. I'm going to try to catch up with everyone.

Amy mom to Avery 17 systemic

[Guest guest]

So glad Avery is doing better. I love good updates! Proms are so much fun! Is

he getting a tux? Post some pics if you can. It is wonderful to watch them grow

and become independent, but bittersweet too. Where did our babies go?? LOL

Michele ( 23, spondy)

From: [mailto: ] On Behalf Of

Amy Spurger

Sent: Saturday, April 16, 2011 10:22 PM

Subject: Update

I haven't been here in a while, I think I have been recovering from our fall and

winter. Avery is doing wonderful! He had a little flair while weaning the

prednisone and getting a cold but we bumped it a little and he recovered

quickly. We are back down to 10mg of the prednisone again and will wait till

June to start weaning again. He has stopped gaining weight at that dose! lol

He looks so good, and so very healthy. He is finally pain free. It took a

long time for the rilonacept to work all the way but for now that horrible

disease is being controlled. Avery now has a girlfriend! They are so very

sweet together, she has down syndrome too. They have known each other all their

lives but haven't seen each other in years! They found each other on facebook

right before he got sick, she thought he was hot when she saw his picture.

She called him when he was in the hospital and they have talked and chatted

since. He asked her to his prom and she said yes! They are both so excited.

lol Since we live so far out she is coming with her mom for the weekend. They

will stay in a hotel in town. Avery is going to take her on his first date to a

movie the night before. It really makes my heart so happy, it's been a long

road and it's so nice to have this joy. She sends me messages on facebook

telling me she loves my son, life doesn't get any better. It's just so nice to

have this normal. I'm going to try to catch up with everyone.

Amy mom to Avery 17 systemic

[Guest guest]

This seems to be the year for girls, and with that heart rate, I’m saying

girl. ☺ Either way, it is such a wonderful time of your life. Enjoy every

minute you can – especially those foot massages. I’ll be praying it all goes

smoothly and that you are able to breastfeed. I know I have read that some

women enjoy a remission during pregnancy so hopefully you will be one of those.

Thinking positive thoughts and saying lots of prayers, Michele ( 23,

spondy)

From: [mailto: ] On Behalf Of

Codianne

Sent: Sunday, April 17, 2011 12:07 AM

Subject: Re: Update

Veri,

No movement yet but I am hoping soon! I can't wait to feel those first

movements. We did get to hear the baby's heartbeat at the last appointment (a

beautiful 165 bpm) and we have our anatomy ultrasound scheduled for May 17th! So

we will find out then whether this baby is a boy or a girl. We really have no

preference but are definitely excited to find out. Thank you for your prayers I

really do appreciate it. As much joy as there has been so far through this

pregnancy I do worry about what if I flare, what if I have to take meds, what

will me having this disease do to my baby and once the baby is born what if I

flare badly. I really do want to breastfeed but I also know my doctor said that

if a flare does happen after the babies birth that most of the medications used

to treat the JIA are not safe for breastfeeding. So we will play it by ear and

hope for the best! Thank you for your prayers!

With Love,

From: Amy Spurger <mom2anz@...<mailto:mom2anz%40>>

Subject: Update

<mailto: %40>

Date: Sunday, April 17, 2011, 3:22 AM

I haven't been here in a while, I think I have been recovering from our fall and

winter. Avery is doing wonderful! He had a little flair while weaning the

prednisone and getting a cold but we bumped it a little and he recovered

quickly. We are back down to 10mg of the prednisone again and will wait till

June to start weaning again. He has stopped gaining weight at that dose! lol

He looks so good, and so very healthy. He is finally pain free. It took a

long time for the rilonacept to work all the way but for now that horrible

disease is being controlled. Avery now has a girlfriend! They are so very

sweet together, she has down syndrome too. They have known each other all their

lives but haven't seen each other in years! They found each other on facebook

right before he got sick, she thought he was hot when she saw his picture.

She called him when he was in the hospital and they have talked and chatted

since. He asked her to his prom and she said yes! They are both so excited.

lol Since we live so far out she is coming with her mom for the weekend. They

will stay in a hotel in town. Avery is going to take her on his first date to a

movie the night before. It really makes my heart so happy, it's been a long

road and it's so nice to have this joy. She sends me messages on facebook

telling me she loves my son, life doesn't get any better. It's just so nice to

have this normal. I'm going to try to catch up with everyone.

Amy mom to Avery 17 systemic