Re: I HATE this damn disease!

[Guest guest]

Jo................I am sitting here crying right along with you!!! This

is an awful disease, and Tigger slippers should be able to always fit and be

worn comfy......there are so many struggles for our kiddos.............give

Bayly a great big birthday hug from across the sea.....luv ya hon, take

care....i will keep on prayin!!!!

Luv and hugs,

Aj and Holly (12 yrs old, systemic jra since 9/94)

_www.caringbridge.org/visit/holly_ (http://www.caringbridge.org/visit/holly)

[Guest guest]

yep...you got me crying too! I hate this disease too! Please give him a big

birthday hug from Madison and I. I hope the day went better for him!

Happy Birthday Bayly!!!!!

Ashlee & Madison

________________________________

From: on behalf of Grant & Jo

Sent: Sun 4/30/2006 5:34 PM

Undisclosed-Recipient:;@...

Subject: I HATE this damn disease!

It's Bayly's 4th birthday today.

He has been wanting and wanting and wanting Tigger slippers.

We finally found him some, his little sister Violet gave them to him for his

birthday.

He can't wear them because there's not enough support for his little swollen

disfigured left ankle, and he fell over.

GOD I HATE THIS DAMN DISEASE!!!!

Jo

(crying my eyes out here)

[Guest guest]

Jo:

I " m crying along with you. This stinks!

Is Bayly a candidate for an injection in his ankle? You may have already

'been there done that' but just had to ask.

Sending prayers and gentle hugs to you and your family tonight.

and Rob 17 Spondy

On Mon, 1 May 2006 07:34:03 +1000 " Grant & Jo " <joking70@...>

writes:

It's Bayly's 4th birthday today.

He has been wanting and wanting and wanting Tigger slippers.

We finally found him some, his little sister Violet gave them to him for

his

birthday.

He can't wear them because there's not enough support for his little

swollen

disfigured left ankle, and he fell over.

GOD I HATE THIS DAMN DISEASE!!!!

Jo

(crying my eyes out here)

[Guest guest]

Jo - Happy belated birthday to Bayly.... I am so sorry that this disease

continues to rob him of his much needed childhood. Hang in there tough

lady! We are sending prayers to you!!

Alia and Caroline, age 4, poly and uveitis

________________________________

From: [mailto: ] On

Behalf Of Grant & Jo

Sent: Sunday, April 30, 2006 4:34 PM

Undisclosed-Recipient:;@...

Subject: I HATE this damn disease!

It's Bayly's 4th birthday today.

He has been wanting and wanting and wanting Tigger slippers.

We finally found him some, his little sister Violet gave them to him for

his

birthday.

He can't wear them because there's not enough support for his little

swollen

disfigured left ankle, and he fell over.

GOD I HATE THIS DAMN DISEASE!!!!

Jo

(crying my eyes out here)

[Guest guest]

Hugs Jo and a Happy Birthday to the big 4 year old man! This disease

does stink! I hope that Bayley can wear his slippers proudly soon,

Michele ( 18, spondy)

I HATE this damn disease!

It's Bayly's 4th birthday today.

He has been wanting and wanting and wanting Tigger slippers.

We finally found him some, his little sister Violet gave them to him for

his

birthday.

He can't wear them because there's not enough support for his little

swollen

disfigured left ankle, and he fell over.

GOD I HATE THIS DAMN DISEASE!!!!

Jo

(crying my eyes out here)

[Guest guest]

Crying with you Jo! I also hate this disease! Something as simple as slippers! I

recall being a young girl and wanting a certain pair of sandals and my mom being

the best went and bought them. I, like Bayley, could not wear them. I would put

them on while sitting but when I realized I would never walk with them I threw

them in the garbage withoutmy mom knowing because I did not want to hurt her

feelings after she had bought them for me....I think she knew though.....Maybe

while Bayley is resting, or watching TV or lying in bed he can put on his tigger

slippers....hugs Jo!

Hang tight and hang tough! Donna

I HATE this damn disease!

It's Bayly's 4th birthday today.

He has been wanting and wanting and wanting Tigger slippers.

We finally found him some, his little sister Violet gave them to him for his

birthday.

He can't wear them because there's not enough support for his little swollen

disfigured left ankle, and he fell over.

GOD I HATE THIS DAMN DISEASE!!!!

Jo

(crying my eyes out here)

[Guest guest]

Isn't it a bugger that so many can relate to this little unfortunate

incident? But THANKYOU for those who've let me know that they do.

Makes me feel somewhat better.

As it turned out, my little mate said he had " the best birthday ever "

(he's had 4) and went to bed totally tired out and not resisting too

much for once. We also gave him a Wiggles cassette recorder (with

microphone no less!) and he's happily carrying it around.

He still won't wear the slippers but I think if I offered them to

Violet instead, the ol sibling rivalry might kick in and he may have

another go! At least to wear them while sitting down. ;-)

Big Hugs to all,

Jo

Bayly, 4, extended oligo

Crying with you Jo! I also hate this disease! Something as simple as

slippers! I recall being a young girl and wanting a certain pair of

sandals and my mom being the best went and bought them. I, like

Bayley, could not wear them. I would put them on while sitting but

when I realized I would never walk with them I threw them in the

garbage withoutmy mom knowing because I did not want to hurt her

feelings after she had bought them for me....I think she knew

though.....Maybe while Bayley is resting, or watching TV or lying in

bed he can put on his tigger slippers....hugs Jo!

> Hang tight and hang tough! Donna

[Guest guest]

O how sweet that he got the slippers he'd been wanting! used

to wear slippers on long car rides because the weight of his shoes

would actually make his knees hurt. Maybe Bayly could wear his

slippers for traveling. Also, on days when he's just not up to

walking, he could sit around in them.

Miaty & (7, systemic)

>

> It's Bayly's 4th birthday today.

> He has been wanting and wanting and wanting Tigger slippers.

> We finally found him some, his little sister Violet gave them to

him for his

> birthday.

>

> He can't wear them because there's not enough support for his

little swollen

> disfigured left ankle, and he fell over.

>

> GOD I HATE THIS DAMN DISEASE!!!!

>

> Jo

> (crying my eyes out here)

>

[Guest guest]

Donna,

has went out shopping for shoes. She would say Ma I have to have

these look they look good on me. I would say yes they do but after we get

home could you still wear them. Now has always had ALOT of shoes. If

she wanted a pair someone in the Family would get her a pair. lolol. She was

the Baby of the family. Well with Me I always had the question like above.

would always say I will wear them ma please get them. They will go good

with my other outfit. Ok I would give in and get them for her. lololol.

We would get home and a week later I would notice them stuffed under her bed

or in her closet. I would say where are those new shoes? I have them

put up Ma cause I am not wearing that outfit yet lolololol. Now loves

Boots also so when she become a TEEN she asked for those BIG high heeled

boots lolol. I would not Buy them for her at the Expensive stores or even at

Walmart. I had put my foot down on paying a lot for shoes. I would take her to

the Thrift stores and she would see a pair she wanted soooooooooooo bad

I would say ok those will not work cause they have a big heel on

them. She wanted them soooooooooo bad. I said Ok but if you FALL or they start

hurting your feet legs or back or hips your still going to wear them young

lady. She knew I meant it. She wore these BOOTs to the Rhuemy Appoint. Cause

they

made her feel TALLER. The Dr said what are you trying to do . The Dr

said take those OFF and I never want to see you in them again lololol. I had

a SMILE on my face. When the Dr went out I said " Told you so " lolol. The

Nurse came in and said Let me see those boots lolol. She took them

outside and brought them back in a bag. She said the Dr said he would rather

see

you walk barefooted than see you in these. walked out barefooted. She

still has the boots as they are the knee boots. She will wear them if we are

going out and stay maybe 2 hours if that. BUT she has those handy Lift

sneakers in a bag when she cant walk in them. It has been funny with

and

shoes. Now its those FLIP FLOPS my sister has already told if she falls

in those she will toss them. My sister told her that what you do know will

catch up with you later on shoes. lolol just looks at my sister and

says well I wear shoes cause I like them. Can't help it if I walk funny in

them. About like me with my sneakers lolol I wear them all the time lolol.

Robbin

[Guest guest]

-Jo,

Im so sorry i missed Mr Bayly's birthday. HAPPY BELATED 4TH to the

birthday boy from us all in MN.

I had tears in my eyes imagining your frustation at a simple task as

wearing a pair of new slippers. My heart breaks for you all. I hope

that things get better and those slippers will have well worn soles

in no time flat!

hugs Helen and (8,systemic)

-- In , " Grant & Jo " <joking70@...> wrote:

>

> It's Bayly's 4th birthday today.

> He has been wanting and wanting and wanting Tigger slippers.

> We finally found him some, his little sister Violet gave them to

him for his

> birthday.

>

> He can't wear them because there's not enough support for his

little swollen

> disfigured left ankle, and he fell over.

>

> GOD I HATE THIS DAMN DISEASE!!!!

>

> Jo

> (crying my eyes out here)

>