Re: Just overnighted 2 packages to Shriners!

[Guest guest]

Jane Antoon is not the patient care coordinator... you need to leave a

message with Jane Smalley. Confusing with more than one Jane there!

I would call them back and leave another message.

They will also need a copy of her MRI (not just the report, but the MRI itself)

when you get that done.

Hope you hear back from someone soon!

Noelle (12-2-01)

Ian (8-15-04)

Just overnighted 2 packages to Shriners!

One to Dr. and one to Dr. D' in Phili. In the

packages, I included:

1 copy of her x-rays and report

1 " fact sheet " about (listing her medical history and

anything else I felt may be important)

12 pictures of (some back pics and sitting/playing pics)

1 disc with 3 video clips of 's back and her bottom-shuffle

WHEW!!! That was a lot of work for me with 4 kids to take care of

and a home printer with no ink!!! (I just ran up to the library and

printed the pages I needed).

Anyway! I just wanted to share my " news " ! I finally feel like I've

done pretty much all I can for right now. Now, I just wait and see

if one of the docs calls me.

Does anyone have a thought about how long I MIGHT have to wait for a

call? Of course every situation is different, but if they routinely

don't call you for like 2 weeks, that would be good for me to know!!!

Also, I left a message for Jane Antoon at Erie.

Oh! And one other thing...we did get our appointment with a local

Ortho moved up - from August 17th to July 13th. I guess it's better

than it was, but I'm still nervous about it being a month away. I

hope she'll be able to be seen by someone sooner...(preferably a

casting doc!).

Thanks for reading my babble! Have a great day!!!

-

- 8/18/06 diag. with 45o curve at 9 months

[Guest guest]

Jane Antoon is not the patient care coordinator... you need to leave a

message with Jane Smalley. Confusing with more than one Jane there!

I would call them back and leave another message.

They will also need a copy of her MRI (not just the report, but the MRI itself)

when you get that done.

Hope you hear back from someone soon!

Noelle (12-2-01)

Ian (8-15-04)

Just overnighted 2 packages to Shriners!

One to Dr. and one to Dr. D' in Phili. In the

packages, I included:

1 copy of her x-rays and report

1 " fact sheet " about (listing her medical history and

anything else I felt may be important)

12 pictures of (some back pics and sitting/playing pics)

1 disc with 3 video clips of 's back and her bottom-shuffle

WHEW!!! That was a lot of work for me with 4 kids to take care of

and a home printer with no ink!!! (I just ran up to the library and

printed the pages I needed).

Anyway! I just wanted to share my " news " ! I finally feel like I've

done pretty much all I can for right now. Now, I just wait and see

if one of the docs calls me.

Does anyone have a thought about how long I MIGHT have to wait for a

call? Of course every situation is different, but if they routinely

don't call you for like 2 weeks, that would be good for me to know!!!

Also, I left a message for Jane Antoon at Erie.

Oh! And one other thing...we did get our appointment with a local

Ortho moved up - from August 17th to July 13th. I guess it's better

than it was, but I'm still nervous about it being a month away. I

hope she'll be able to be seen by someone sooner...(preferably a

casting doc!).

Thanks for reading my babble! Have a great day!!!

-

- 8/18/06 diag. with 45o curve at 9 months

[Guest guest]

Oh my goodness! I can't believe that about the Janes!!! Thanks

for telling me! Speaking of Jane, what exactly should I be

asking her to do? My message (to the wrong Jane) just basically

said that I was hoping she could help to move along and get

her put into their system and stuff. Is there anything else I should

ask her?

As far as the MRI, that's another whole issue. I would have sent

them a copy of it if I had one to send! The problem is that our

local (small) hospitals don't have the capability to do an MRI on a

baby, and the ortho that our ped. referred us to hasn't ordered one

at Children's Hospital yet. I'm assuming that he is waiting until he

sees in person, but that's not until JULY 13TH (just got

moved up from August)!

So...I will be calling him (who finally has 's x-ray report)

tomorrow and seeing if he'll at least order an MRI.

Do you think it will make a HUGE difference with the casting doc's

if she hasn't had one yet? Is it possible that they would just order

one for themselves?

Thanks so much everyone!

-

[Guest guest]

Oh my goodness! I can't believe that about the Janes!!! Thanks

for telling me! Speaking of Jane, what exactly should I be

asking her to do? My message (to the wrong Jane) just basically

said that I was hoping she could help to move along and get

her put into their system and stuff. Is there anything else I should

ask her?

As far as the MRI, that's another whole issue. I would have sent

them a copy of it if I had one to send! The problem is that our

local (small) hospitals don't have the capability to do an MRI on a

baby, and the ortho that our ped. referred us to hasn't ordered one

at Children's Hospital yet. I'm assuming that he is waiting until he

sees in person, but that's not until JULY 13TH (just got

moved up from August)!

So...I will be calling him (who finally has 's x-ray report)

tomorrow and seeing if he'll at least order an MRI.

Do you think it will make a HUGE difference with the casting doc's

if she hasn't had one yet? Is it possible that they would just order

one for themselves?

Thanks so much everyone!

-

[Guest guest]

Thanks again, ! I talked to Jane today...could the lady

be any nicer?! What a helpful and comforting conversation! She asked

me lots of questions and told me all about the casting procedure. I

told her about the package that Dr. should be recieving

today and she said that's GREAT! He will hopefully look it over

today or tomorrow and have her relay to me what his " answer " is.

Jane did confirm that will need the MRI, so I called our

Detroit ortho and begged them to order one, which they won't do, of

course until the doc sees her - which isn't for another month. The

nurse practitioner said to me " It probably is progressive, but a

month won't really make that much of a difference " . I wanted to

scream " But it's not YOUR baby!!!! "

So, tomorrow I'll BEG our pediatrician's substitute (ours is out on

medical leave) to order the MRI at Children's. It's crazy - everyone

agrees that she needs one but no one will order it!!!!!! UGH!

Thanks again!

-

8/18/06 - diag. at 9 months with 45o curve

[Guest guest]

Thanks again, ! I talked to Jane today...could the lady

be any nicer?! What a helpful and comforting conversation! She asked

me lots of questions and told me all about the casting procedure. I

told her about the package that Dr. should be recieving

today and she said that's GREAT! He will hopefully look it over

today or tomorrow and have her relay to me what his " answer " is.

Jane did confirm that will need the MRI, so I called our

Detroit ortho and begged them to order one, which they won't do, of

course until the doc sees her - which isn't for another month. The

nurse practitioner said to me " It probably is progressive, but a

month won't really make that much of a difference " . I wanted to

scream " But it's not YOUR baby!!!! "

So, tomorrow I'll BEG our pediatrician's substitute (ours is out on

medical leave) to order the MRI at Children's. It's crazy - everyone

agrees that she needs one but no one will order it!!!!!! UGH!

Thanks again!

-

8/18/06 - diag. at 9 months with 45o curve

[Guest guest]

Thanks again, ! I talked to Jane today...could the lady

be any nicer?! What a helpful and comforting conversation! She asked

me lots of questions and told me all about the casting procedure. I

told her about the package that Dr. should be recieving

today and she said that's GREAT! He will hopefully look it over

today or tomorrow and have her relay to me what his " answer " is.

Jane did confirm that will need the MRI, so I called our

Detroit ortho and begged them to order one, which they won't do, of

course until the doc sees her - which isn't for another month. The

nurse practitioner said to me " It probably is progressive, but a

month won't really make that much of a difference " . I wanted to

scream " But it's not YOUR baby!!!! "

So, tomorrow I'll BEG our pediatrician's substitute (ours is out on

medical leave) to order the MRI at Children's. It's crazy - everyone

agrees that she needs one but no one will order it!!!!!! UGH!

Thanks again!

-

8/18/06 - diag. at 9 months with 45o curve

[Guest guest]

,

My daughter Mila is waiting to go to Shriners in Aug. I also cannot get

an MRI ordered. It is so frustrating! I am taking my daughter back to

the pediatrician next week because she has some major developmental

delays and only uses her right arm to pick things up.... I am hoping

for a neuro consult. Maybe a neurologist would order a MRI. I find that

it is difficult to find the right degree of pushiness with doctors

without seeming " crazy " . I hope you have better results than I have.

Kezia