update

August 31, 2009

Hey Donna,

I hope things are better today for and for you.

Veri

Re: update

Good luck to you all. I'll keep you in my prayers.

le & (7) RF+ poly-JRA, Raynaud's, linear scleroderma

>

> I am hangin Veri, just a bit tired, confused and fustrated. This was suppose

to be minor surgery and he was suppose to be back to school this week. We simply

dont understand!

>

> Donna

>

September 1, 2009

ok ...we are still at the hospital. UGH! had his 3rd surgery Sunday and

more cleaning out was done, antibiotics put in as well as a drain. Doc was a bit

concerned with some bleeders in his knee and tried to cauterize them only to

find the tissue was very fryable but not sure why just very rare for an

otherwise healthy teenager. Tests are being done for that. Antibiotics were

changed, fevers have stayed for 24 hours now and he has slept a bit and ate some

grapes so even though we are moving forward slowly WE ARE MOVING.

ooo!!!!!!!!! We will likely be here another day or two and then a pic line

will be put in and we get to go home with home health.....I so miss my bed, my

critters and real food but Matt is loving not having a parent in the home. uh

oh! Til next time.......hangin tight and tough!

Donna

September 1, 2009

What an inspirational update....I love your attitude - I know every bone in

your body must be sore.

Stay strong, Donna.

~osh

September 6, 2009

Thanks for the update and sharing your frustrations with us.? Know that we are

here for you and praying for you all.? You are doing a great job I am sure and

getting mad about this is so normal.?

Veri & Jaye 15 poly

update

Although we are home and in the comforts of no alarms, IVs, nurses and doctors?

or?poking and prodding we continue to fight this damn infection. will be

better one minute than not so great the next. The docs warned of peaks and

valleys and explained this battle as not a sprint but more of a marathon and

only time and treatment will get us to the goal we desire. remains weak

and has little appetite but all in all he is getting better. Not being the most

patient of persons I want him better now, as I know all parents who watch their

child get sick do.??

I never ever seen myself on this side of the fence. I am usually the sick one,

the one who needs various surgeries, therapies, treatments, etc. I am the one

usually being tended to and helped along the way. I never seen myself doing this

type of physical therapy with my child and watching him work through the pain.?

Hooking up CPM machines, filling polar paks, checking temps, delivering pain

meds and I never imagined myself giving infusion treatment not once but 3 times

daily. Saline, antibiotic, saline again?and heparin for a total of 4 syringes, 3

times per day. I am the one saying come on you can do it, you have to do it, you

cant just give up and the list goes on.? I have had many battles of my own and

keeping up with and treatments may not be easy on my body but I am here

for him til the meds run out, the therapy is complete, the knee is in 100% shape

and the infection is 100% gone.

If I have learned anything, which I have learned alot from this experience, it

has been I so admire the parents who I chat with so often about the battles

their child faces with JA. I truly know how incredible you are as you fight the

tears, argue with your child, and watch their young bodies go down hill then up

again. I respect so much what my mom (and dad) have done for me over the years.

I now know it wasnt an easy battle for them either. Hanging tight and hanging

tough has taken on a new meeting as I help through his nightmare. There

is also the psychological side...being scared, sad, mad, yet feeling blessed he

has made it through and will be ok. I still, am so angry at the original

hospital and for these facilities that allow?passing something along like to

innocent people, especially my child. I feel hospitals should be held

accountable. You hear way too much of this and sometimes with near fatal or

fatal results. So as I wrestle to get him well I also battle the

thoughts in my head. The who, why, and where of it all and what can be done to

prevent it again.....

As I am Hangin tight and extra tough I hope you are all doing the same....

Donna

September 9, 2009

Glad to see the update on , but I am sorry to hear about her jaw. Please

let us know when she is going in and how it all goes.

I understand about refusing the meds, and I totally know the relief you are

feeling that she is back on and hopefully stopping any more joint damage. How

brave of her to do them herself. These kids are warriors and really an

inspiration. How they just get up and keep dealing with all of this stuff is

beyond me.

Let us know how she is doing when you can, Michele ( 22, spondy)

________________________________

From: [mailto: ] On Behalf Of

quacksmum

Sent: Wednesday, September 09, 2009 6:33 AM

Subject: update

Hi guys,

Its been a while since i posted, mainly due to having no time and utter

exhaustion....

Alot has happened to since my last post...

We have been told that the arthritis has stopped her jaw growing at all and the

TMJ has deteriorated to a point that in a few months she will be having a total

jaw replacement...

She has had 3 arthrocentesis this year to the jaw and also steroids into her

elbow as its partially fused and we are led to believe that she will be having

steroids packed into her TMJ joints every 6-8 weeks, she had 2 lots in 3 weeks

and she is doing well on them

She is also back on her Enbrel, she had been refusing injections for such a long

time they put her on Infliximab, but that wasnt working for her... so a few

months ago they gave her the ultimatum, either comply and take your enbrel or we

remove everything and wait until you agree.... THANKFULLY it worked well and

voila not only is she back on the injections, but she's also doing them herself

!!! I cannot say how proud i am of her or relieved LOL... oh and her arthritis

has settled down for the first time in 3 years... but if she missed one of her

2x a week doses it starts to flare badly!!! so we dont miss meds ever now !!

I am glad to hear Bayly is getting the joint injections, we too use wrist rests

after her wrists are done as her surgeon likes the joint to be rested for 48

hours after injection...

Can i also say how horrified i am that the poor wee girl had her injections put

back, how horrid those doctors are !!! Wish i could give the mum a hug and say

it will be ok...

SW Scotland

Mum to aged 13 enthesitis related arthritis and psoriatic arthritis HLA

B27+

please visit my blog www.quackas.blogspot.com

September 9, 2009

Hi ,

So glad to hear that is taking charge of her own Enbrel

injections! That is AWESOME! Congrats and kudos to your brave and

lovely girl!!

My darling niece was diagnosed with Type 1 Diabetes 6 months after

Bayly's JIA dx (in 2003), and she was doing her own insulin shots 6

months later, at all of age 8! We were so proud of her. She's also

made the decision to have an insluin pump installed soon, and again we

think that's a very mature thing to do.

I have been wondering at what age you can finally negotiate with your

child to take responsibility for their own treatment...by that I mean

exactly what the doctors said to - do this or do nothing, and know

the consequences. Bayly's reaching an age where he can argue and refuse

to do things, including medicine, so it's a challenge!

Luckily he was much more accepting of the whole process on Tuesday, and

his wrist is definitely on the improve! Yay!!

Gosh, we all have great kids, don't we?!

Jo

Bayly, 7, extended oligo

PS: Has seen our new social network site?

www.juvenileidiopathicarthritis.ning.com

<http://www.juvenileidiopathicarthritis.ning.com> There is another 13

y.o. girl on there looking for for a pen pal! Perhaps they could share

together...? (I think her post is in the Blogs section)

PPS: I'm going to check out your blog- mine's at

www.veebeejay.blogspot.com <http://www.veebeejay.blogspot.com> []

>

> Hi guys,

>

> Its been a while since i posted, mainly due to having no time and

utter exhaustion....

>

> Alot has happened to since my last post...

>

> We have been told that the arthritis has stopped her jaw growing at

all and the TMJ has deteriorated to a point that in a few months she

will be having a total jaw replacement...

>

> She has had 3 arthrocentesis this year to the jaw and also steroids

into her elbow as its partially fused and we are led to believe that she

will be having steroids packed into her TMJ joints every 6-8 weeks, she

had 2 lots in 3 weeks and she is doing well on them

>

> She is also back on her Enbrel, she had been refusing injections for

such a long time they put her on Infliximab, but that wasnt working for

her... so a few months ago they gave her the ultimatum, either comply

and take your enbrel or we remove everything and wait until you

agree.... THANKFULLY it worked well and voila not only is she back on

the injections, but she's also doing them herself !!! I cannot say how

proud i am of her or relieved LOL... oh and her arthritis has settled

down for the first time in 3 years... but if she missed one of her 2x a

week doses it starts to flare badly!!! so we dont miss meds ever now !!

>

> I am glad to hear Bayly is getting the joint injections, we too use

wrist rests after her wrists are done as her surgeon likes the joint to

be rested for 48 hours after injection...

>

> Can i also say how horrified i am that the poor wee girl had her

injections put back, how horrid those doctors are !!! Wish i could give

the mum a hug and say it will be ok...

>

> SW Scotland

>

> Mum to aged 13 enthesitis related arthritis and psoriatic

arthritis HLA B27+

>

> please visit my blog www.quackas.blogspot.com

<http://www.quackas.blogspot.com>

September 10, 2009

Donna,

Sorry things are not going well for yet. We will continue to keep him in

our prayers and you also.

Veri & Jaye

update

just when ya think..

been another trying day, has adhesive sensitivity and not once, not

twice but three times since being home his PIC line dressings had to be changed

with our last option. He blistered and had a rash so it had to be changed AND

his knee is warm tonight with the wounds showing redness that wasn't there

before...keep all positive vibes and prayers flowing for him. PLEASE...

Donna

September 10, 2009

Donna,

Is being seen by your ortho or by an Infectious Disease team? If just

the ortho I would recommend that an ID team be brought in. Sorry to hear about

the tape sensitivity. Ouch! poor guy needs a break.

e

From: ajaoky@... <ajaoky@...>

Subject: update

ajao_young_adults ,

Date: Thursday, September 10, 2009, 7:41 PM

just when ya think..

been another trying day, has adhesive sensitivity and not once, not

twice but three times since being home his PIC line dressings had to be changed

with our last option. He blistered and had a rash so it had to be changed AND

his knee is warm tonight with the wounds showing redness that wasn't there

before...keep all positive vibes and prayers flowing for him. PLEASE...

Donna

September 11, 2009

We are currently seeing the ortho, the ID and his pediatrician. If things dont

really start to move uphill by Tuesday I believe the docs will be seeking other

remedies yet again.....

I still am dealing with the emotional side of all of this and I want to take

just a second to say I admire all of you mommas who do this all the time. Better

yet those of you who work...how in the heck do you do it? We have a daily

schedules that?are nuts. I do the?7,3,and 11 infusions. Nurse, PT, and homebound

school, throw in a docs appointment here and there, fixing food when

decides he wants to try a bite?and I dont know if I am coming or going. Today?I

only have to take homework to school and see one nurse (so far) so I am hoping

for a lil tiny bit of rest before my stepdaughters get into town at 6...

All I can say is God Bless you mommas. You are awesome!

hugs

Donna

September 11, 2009

-Donna,

I hope you got the rest you were seeking and that everything will get better

soon. Hang in there and best wishes to you and !

& 16

-- In , ajaoky@... wrote:

>

> We are currently seeing the ortho, the ID and his pediatrician. If things dont

really start to move uphill by Tuesday I believe the docs will be seeking other

remedies yet again.....

>

> I still am dealing with the emotional side of all of this and I want to take

just a second to say I admire all of you mommas who do this all the time. Better

yet those of you who work...how in the heck do you do it? We have a daily

schedules that?are nuts. I do the?7,3,and 11 infusions. Nurse, PT, and homebound

school, throw in a docs appointment here and there, fixing food when

decides he wants to try a bite?and I dont know if I am coming or going. Today?I

only have to take homework to school and see one nurse (so far) so I am hoping

for a lil tiny bit of rest before my stepdaughters get into town at 6...

>

> All I can say is God Bless you mommas. You are awesome!

>

> hugs

>

> Donna

>

September 11, 2009

Donna,

sorry that you are having to go through this with . It is not easy I am

sure. You will do fine and will come out of this experience with the ability to

share your experience and the knowledge you gain with other parents.? Just one

day at a time is all you can do, and sometimes it is just one moment at a time

is all that you can handle.? We are praying for you and and the doctors

to get things right. I pray for a complete recovery soon. Also I hope you are

taking care of your self. You can not neglect your self and still be able to

take care of your family.? Keep us posted.