Re: injections, camps, procedures

[Guest guest]

You can do this, it's not that big of a deal.    Did that help? lol

 Seriously, you can do this, it is the new normal.  We took our first trip in

March and I know Avery's is only once a week but I had to put it in the cooler

and make sure I took 2 just in case and pack the needles and sterile water and

all the extra needles just in case but we did it.  And you will do it.  Even

though has this disease she gets to have a normal life, one that involves

a daily shot.  It's time to make everything else more important again.  Hugs

nn I know how hard this is, I hope my ramble made sense.  

Amy mom to Avery 17 systemic

________________________________

From: nn <rosannwinn@...>

Sent: Wednesday, April 27, 2011 10:14 PM

Subject: Re: injections, camps, procedures

 

Hi all,

We are navigating this new routine of a daily injection of Kineret. We are fine

in our normal nightly routine - EMLA cream an hour before, take the shot out of

the fridge an hour before, ice for 10 minutes before the shot, give the shot no

later than 9pm. It's been 7 months doing the nightly shot. Now it's time to

" take it on the road " - getting back to traveling a bit, having sleepovers,

possibly some camps this summer. Can anyone share their experiences of dealing

with shots in various situations? I'm not exactly sure what I'm asking - maybe

just looking for someone to say that we can do this, that we can re-emerge back

into society and be out and about and still deal with the injections. Maybe I

need to be told that it's no big deal, because it still feels like a big deal to

me. It's only a 5 second shot every night, but it feels like a well-thought-out

production every night. It's stressful to think of doing it anywhere but in our

house. And

these thoughts were triggered tonight because of an upcoming " Bunk with the

Beasts " girl scout trip. I'm not the only mom who'll be going along, but I'm

the only one who'll be doing an injection. I know, not a big deal, just deal

with it right? Is it just that simple?

nn (, 10, systemic)

[Guest guest]

Hi nn,

We have been where you are with kineret, wondering how to manage a " normal " life

with a daily injection. And you absolutely can! We have traveled overseas,

camped in Yellowstone and sent our son to summer camp on kineret. It takes

planning. We travel with a cooler with ice packs and another cooler that plugs

into the car for long road trips. At camp, the nurses in the infirmary gave our

son his kineret injections, (with lots of encouragement and teaching from me).

We have even taught parent's of our son's friends to give shots so our son could

go to their vacation house with them. For overnights, we give the shot before he

goes to his friend, say friday afternoon, and then again on saturday night.

Although I confess at times to skipping a shot when he wasn't coming home until

sunday or so. So far he's been fine with that, but I wouldn't do that until your

daughter is very stable. The injection is painful, and our son yelled and

screamed for a long time. But he did learn that if he wanted to do these

activities, he needed to behave when others gave him his shot, or he couldn't

go. Good luck, and please feel free to ask any questions. (and Ezra,

systemic and turning 15 yrs on sunday!)

________________________________

From: nn <rosannwinn@...>

Sent: Wed, April 27, 2011 11:14:36 PM

Subject: injections, camps, procedures

Hi all,

We are navigating this new routine of a daily injection of Kineret. We are fine

in our normal nightly routine - EMLA cream an hour before, take the shot out of

the fridge an hour before, ice for 10 minutes before the shot, give the shot no

later than 9pm. It's been 7 months doing the nightly shot. Now it's time to

" take it on the road " - getting back to traveling a bit, having sleepovers,

possibly some camps this summer. Can anyone share their experiences of dealing

with shots in various situations? I'm not exactly sure what I'm asking - maybe

just looking for someone to say that we can do this, that we can re-emerge back

into society and be out and about and still deal with the injections. Maybe I

need to be told that it's no big deal, because it still feels like a big deal to

me. It's only a 5 second shot every night, but it feels like a well-thought-out

production every night. It's stressful to think of doing it anywhere but in our

house. And these thoughts were triggered tonight because of an upcoming " Bunk

with the Beasts " girl scout trip. I'm not the only mom who'll be going along,

but I'm the only one who'll be doing an injection. I know, not a big deal, just

deal with it right? Is it just that simple?

nn (, 10, systemic)

[Guest guest]

Roseann,

Yes you can do it and you will do it just fine. Because you are the mom. Mom's

tend to be able to figure it out and it all works out better then we think it

will. When you are stressed and scattered about this others will see you and

calm and in control and they will be wondering how you can do all that you do.

This will not only be good for your daughter but also good for you. There needs

to be a contingency plan anyway for a " just in case " . My daughter is older now

and she is giving her own shots as of two weeks ago. She just decided one night

as I was drawing up one that she wanted to do it and she did. Before this I was

even able to go away for a few days with out her because two of my best friends

here in town can give her the injections. One of my best friends is a RN and

she was happy to be able to assist, the other friend is a pediatrician. When I

first asked the ped to help me she gave me a look of " I'm not sure " and she

said, " do you know how long it has been since I gave an injection " . I guess

that is why the doctors have nurses, but she did it for us when I needed her to.

We only give the two shots once a week so it is not like we do it daily as you

do. But you will do fine and you will figure it out. We (mom's) learn to do

things that just boggle the minds of most of our friends. We do this because

this is our child and we want to give them as " normal " as possible. It is not

fair that they miss out on so many things that are beyond our control. Of course

" fair " is a relative term. So as the mom we will find ways to make sure our

kids can get the most out of life and I believe they actually get more. My

daughter is forced to spend time with me because of this and we are so close.

Of course she does not complain she is 17 and she still really likes me. Many

kids at the age of 17 do not like their family and all they can do is try to get

away. So I am so very blessed. I will never say that I like JIA, but I have

been blessed many times over because of circumstances that the JIA has put us

in. If I could cure my daughter of this I would in a heartbeat. But I try not

to dwell on that and dwell on what we have and what a wonderful special young

woman my daughter is becoming. I will pray for you as you are transitioning

into doing more and going more. There is a wonderful world out there for you and

your daughter to enjoy. Sorry so long, I will shut up now.

Veri & Jaye 17 poly

injections, camps, procedures

Hi all,

We are navigating this new routine of a daily injection of Kineret. We are fine

in our normal nightly routine - EMLA cream an hour before, take the shot out of

the fridge an hour before, ice for 10 minutes before the shot, give the shot no

later than 9pm. It's been 7 months doing the nightly shot. Now it's time to

" take it on the road " - getting back to traveling a bit, having sleepovers,

possibly some camps this summer. Can anyone share their experiences of dealing

with shots in various situations? I'm not exactly sure what I'm asking - maybe

just looking for someone to say that we can do this, that we can re-emerge back

into society and be out and about and still deal with the injections. Maybe I

need to be told that it's no big deal, because it still feels like a big deal to

me. It's only a 5 second shot every night, but it feels like a well-thought-out

production every night. It's stressful to think of doing it anywhere but in our

house. And these thoughts were triggered tonight because of an upcoming " Bunk

with the Beasts " girl scout trip. I'm not the only mom who'll be going along,

but I'm the only one who'll be doing an injection. I know, not a big deal, just

deal with it right? Is it just that simple?

nn (, 10, systemic)

[Guest guest]

My daughter is not my JIA child but she takes a nightly growth hormone

injection. Not certain what the delivery system is for your daughter's

injection but for the GH we use a 'pod' that holds about 5 days worth of meds.

It must be refridgerated too.

Since Arianna turned 9 last summer she does her own injections...I just mix the

meds. We inject earlier in the day for sleepovers and for her 4th grade

overnight class trip next month I got the OK to skip one night from the doctor.

Not certain that's an option for you.

When the kids go to grandmas for a week, I use the special traveling bags we got

with their medications. They have room for a ice pack, the meds, & any supplies.

We have not had an issue with it...and once you do it a couple of times...I'm

certain you'll be fine. It just becomes routine.

Good luck,

& , 7.5, poly...nystagmus...SPD...

Sent from my iPhone

[Guest guest]

It won't be so easy, but you already have the routine down. Now it is just

doing it somewhere else. I would probably get a small cooler for travel just

for her meds. That way it is protected from possible contamination. I know

that the good for having a wonderful time, would outweigh the trouble of

doing it. Have great summer!

Audra

14 poly 07

Peyton 13 poly 08

>

> Hi all,

> We are navigating this new routine of a daily injection of Kineret. We are

fine in our normal nightly routine - EMLA cream an hour before, take the shot

out of the fridge an hour before, ice for 10 minutes before the shot, give the

shot no later than 9pm. It's been 7 months doing the nightly shot. Now it's

time to " take it on the road " - getting back to traveling a bit, having

sleepovers, possibly some camps this summer. Can anyone share their experiences

of dealing with shots in various situations? I'm not exactly sure what I'm

asking - maybe just looking for someone to say that we can do this, that we can

re-emerge back into society and be out and about and still deal with the

injections. Maybe I need to be told that it's no big deal, because it still

feels like a big deal to me. It's only a 5 second shot every night, but it

feels like a well-thought-out production every night. It's stressful to think

of doing it anywhere but in our house. And these thoughts were triggered

tonight because of an upcoming " Bunk with the Beasts " girl scout trip. I'm not

the only mom who'll be going along, but I'm the only one who'll be doing an

injection. I know, not a big deal, just deal with it right? Is it just that

simple?

> nn (, 10, systemic)

>

[Guest guest]

, How long has Ezra been on kineret - and is that his only med? How many

doses do you do up ahead of time from one .67ml glass syringe? Thanks much,

nn

>

> Hi nn,

>

> We have been where you are with kineret, wondering how to manage a " normal "

life

> with a daily injection. And you absolutely can! We have traveled overseas,

> camped in Yellowstone and sent our son to summer camp on kineret. It takes

> planning. We travel with a cooler with ice packs and another cooler that plugs

> into the car for long road trips. At camp, the nurses in the infirmary gave

our

> son his kineret injections, (with lots of encouragement and teaching from me).

> We have even taught parent's of our son's friends to give shots so our son

could

> go to their vacation house with them. For overnights, we give the shot before

he

> goes to his friend, say friday afternoon, and then again on saturday night.

> Although I confess at times to skipping a shot when he wasn't coming home

until

> sunday or so. So far he's been fine with that, but I wouldn't do that until

your

> daughter is very stable. The injection is painful, and our son yelled and

> screamed for a long time. But he did learn that if he wanted to do these

> activities, he needed to behave when others gave him his shot, or he couldn't

> go. Good luck, and please feel free to ask any questions. (and Ezra,

> systemic and turning 15 yrs on sunday!)

>

>

>

>

> ________________________________

> From: nn <rosannwinn@...>

>

> Sent: Wed, April 27, 2011 11:14:36 PM

> Subject: injections, camps, procedures

>

>

> Hi all,

> We are navigating this new routine of a daily injection of Kineret. We are

fine

> in our normal nightly routine - EMLA cream an hour before, take the shot out

of

> the fridge an hour before, ice for 10 minutes before the shot, give the shot

no

> later than 9pm. It's been 7 months doing the nightly shot. Now it's time to

> " take it on the road " - getting back to traveling a bit, having sleepovers,

> possibly some camps this summer. Can anyone share their experiences of

dealing

> with shots in various situations? I'm not exactly sure what I'm asking -

maybe

> just looking for someone to say that we can do this, that we can re-emerge

back

> into society and be out and about and still deal with the injections. Maybe I

> need to be told that it's no big deal, because it still feels like a big deal

to

> me. It's only a 5 second shot every night, but it feels like a

well-thought-out

> production every night. It's stressful to think of doing it anywhere but in

our

> house. And these thoughts were triggered tonight because of an upcoming

" Bunk

> with the Beasts " girl scout trip. I'm not the only mom who'll be going along,

> but I'm the only one who'll be doing an injection. I know, not a big deal,

just

> deal with it right? Is it just that simple?

> nn (, 10, systemic)

>

>

>

>

>

[Guest guest]

Thank you for all the great suggestions and support! I'm feeling brave and we

might book a trip to Oregon for June - will be our first time flying with

kineret. Any suggestions about plane trips? Should I send some ahead via

fedex, or just take all the syringes with us in a cooler with ice? I think

Denver to Portland isn't too long of a flight. nn

> >

> > Hi all,

> > We are navigating this new routine of a daily injection of Kineret. We are

fine in our normal nightly routine - EMLA cream an hour before, take the shot

out of the fridge an hour before, ice for 10 minutes before the shot, give the

shot no later than 9pm. It's been 7 months doing the nightly shot. Now it's

time to " take it on the road " - getting back to traveling a bit, having

sleepovers, possibly some camps this summer. Can anyone share their experiences

of dealing with shots in various situations? I'm not exactly sure what I'm

asking - maybe just looking for someone to say that we can do this, that we can

re-emerge back into society and be out and about and still deal with the

injections. Maybe I need to be told that it's no big deal, because it still

feels like a big deal to me. It's only a 5 second shot every night, but it

feels like a well-thought-out production every night. It's stressful to think

of doing it anywhere but in our house. And these thoughts were triggered

tonight because of an upcoming " Bunk with the Beasts " girl scout trip. I'm not

the only mom who'll be going along, but I'm the only one who'll be doing an

injection. I know, not a big deal, just deal with it right? Is it just that

simple?

> > nn (, 10, systemic)

> >

>

[Guest guest]

Guess who lives in Portland! ( though we will be gone for part of June to go to

n's college graduation) let me know when you come to town. (

n,22, systemic)

Sent from my iPhone

On Apr 29, 2011, at 4:36 PM, " nn " <rosannwinn@...> wrote:

> Thank you for all the great suggestions and support! I'm feeling brave and we

might book a trip to Oregon for June - will be our first time flying with

kineret. Any suggestions about plane trips? Should I send some ahead via fedex,

or just take all the syringes with us in a cooler with ice? I think Denver to

Portland isn't too long of a flight. nn

>

>

> > >

> > > Hi all,

> > > We are navigating this new routine of a daily injection of Kineret. We are

fine in our normal nightly routine - EMLA cream an hour before, take the shot

out of the fridge an hour before, ice for 10 minutes before the shot, give the

shot no later than 9pm. It's been 7 months doing the nightly shot. Now it's time

to " take it on the road " - getting back to traveling a bit, having sleepovers,

possibly some camps this summer. Can anyone share their experiences of dealing

with shots in various situations? I'm not exactly sure what I'm asking - maybe

just looking for someone to say that we can do this, that we can re-emerge back

into society and be out and about and still deal with the injections. Maybe I

need to be told that it's no big deal, because it still feels like a big deal to

me. It's only a 5 second shot every night, but it feels like a well-thought-out

production every night. It's stressful to think of doing it anywhere but in our

house. And these thoughts were triggered tonight because of an upcoming " Bunk

with the Beasts " girl scout trip. I'm not the only mom who'll be going along,

but I'm the only one who'll be doing an injection. I know, not a big deal, just

deal with it right? Is it just that simple?

> > > nn (, 10, systemic)

> > >

> >

>

>

[Guest guest]

Just bring it in a small zip side cooler bag as your carry on. That is what we

have always

done.

e, mom to 'joe' 24 poly+

From: nn <rosannwinn@...>

Subject: Re: injections, camps, procedures

Date: Friday, April 29, 2011, 4:36 PM

 

Thank you for all the great suggestions and support! I'm feeling brave

and we might book a trip to Oregon for June - will be our first time flying with

kineret. Any suggestions about plane trips? Should I send some ahead via

fedex, or just take all the syringes with us in a cooler with ice? I think

Denver to Portland isn't too long of a flight. nn

> >

> > Hi all,

> > We are navigating this new routine of a daily injection of Kineret. We are

fine in our normal nightly routine - EMLA cream an hour before, take the shot

out of the fridge an hour before, ice for 10 minutes before the shot, give the

shot no later than 9pm. It's been 7 months doing the nightly shot. Now it's

time to " take it on the road " - getting back to traveling a bit, having

sleepovers, possibly some camps this summer. Can anyone share their experiences

of dealing with shots in various situations? I'm not exactly sure what I'm

asking - maybe just looking for someone to say that we can do this, that we can

re-emerge back into society and be out and about and still deal with the

injections. Maybe I need to be told that it's no big deal, because it still

feels like a big deal to me. It's only a 5 second shot every night, but it

feels like a well-thought-out production every night. It's stressful to think

of doing it anywhere but in our house.

And these thoughts were triggered tonight because of an upcoming " Bunk with the

Beasts " girl scout trip. I'm not the only mom who'll be going along, but I'm

the only one who'll be doing an injection. I know, not a big deal, just deal

with it right? Is it just that simple?

> > nn (, 10, systemic)

> >

>

[Guest guest]

Will do!

> > > >

> > > > Hi all,

> > > > We are navigating this new routine of a daily injection of Kineret. We

are fine in our normal nightly routine - EMLA cream an hour before, take the

shot out of the fridge an hour before, ice for 10 minutes before the shot, give

the shot no later than 9pm. It's been 7 months doing the nightly shot. Now it's

time to " take it on the road " - getting back to traveling a bit, having

sleepovers, possibly some camps this summer. Can anyone share their experiences

of dealing with shots in various situations? I'm not exactly sure what I'm

asking - maybe just looking for someone to say that we can do this, that we can

re-emerge back into society and be out and about and still deal with the

injections. Maybe I need to be told that it's no big deal, because it still

feels like a big deal to me. It's only a 5 second shot every night, but it feels

like a well-thought-out production every night. It's stressful to think of doing

it anywhere but in our house. And these thoughts were triggered tonight because

of an upcoming " Bunk with the Beasts " girl scout trip. I'm not the only mom

who'll be going along, but I'm the only one who'll be doing an injection. I

know, not a big deal, just deal with it right? Is it just that simple?

> > > > nn (, 10, systemic)

> > > >

> > >

> >

> >

>

>

>