Re: We talked to Jessie Doctors office which made things confusing.

[Guest guest]

If it is congenital and they are talking surgery, you will want to check in to the VEPTR procedure.

Noelle (12-2-01)Ian (8-15-04)

We talked to Jessie Doctors office which made things confusing.

just got off the phone with Dr. Blasier's office, Jessie's ortho specialist. I must say things just got more confusing. He talked to a nurse whom had Jessie's medical records in front of her. and I just talked and do NOT trust this place at all. First off the nurse had no idea what COB nor RVAD meant. had to give her the definitions over the phone. All she could tell us was that Jessie started at a 35 degree in September and has progressed to a 57.6 degree. The nurse said his curve goes from the left shoulder blade to the top of his hip mostly on his left side. She confirmed that Jessie was to have a CT scan last week as well as today in which Leigh Ann, Jessie's mother, had called and cancelled them due to Jessie having a cold. The CT scan is now rescheduled for January 11, 2005. When asked about bracing she told that since Jessie's curvature is so high it wouldn't be helpful to Jessie as they are treating it as congentile. It seems that the doctors are believing with the other xrays there is a good possiblility of a reason for Jessie's scoliosis. When asked her why the CT scan wasn't done in September, she had no answer. and I are sitting here talking and think it is a real good idea to take Jessie elsewhere. It bothers me terribly that this nurse had no clue as to what Cobb and RVAD was. I guess the only good thing I can think of out of all this is that Jessie won;t have the surgery they are so anxious to do until after court. It sure makes us want to just fly down there, swoop our little man up and bring him home for better care. Is it January 17, 2006 yet? That is our court date. If we don't get custody it is hard to say what his mother will have done. Jackie~

[Guest guest]

Jackie,

Our dd has congenital, we have been to see about 6 dr.s and we have

never been given an Rvad just a curve amount. Maybe you could copy

off some articles about congenital scoliosis, the risk of thoracic

insufficiency syndrome with high curves and also an article about

the VEPTR surgery , so that you can present these, if you should

need them to explain to the court about the seriousness and urgency

of his condition.

mary

>

> just got off the phone with Dr. Blasier's office, Jessie's

> ortho specialist. I must say things just got more confusing. He

> talked to a nurse whom had Jessie's medical records in front of

her.

> and I just talked and do NOT trust this place at all. First

> off the nurse had no idea what COB nor RVAD meant. had to

> give her the definitions over the phone. All she could tell us was

> that Jessie started at a 35 degree in September and has progressed

> to a 57.6 degree. The nurse said his curve goes from the left

> shoulder blade to the top of his hip mostly on his left side. She

> confirmed that Jessie was to have a CT scan last week as well as

> today in which Leigh Ann, Jessie's mother, had called and

cancelled

> them due to Jessie having a cold. The CT scan is now rescheduled

for

> January 11, 2005. When asked about bracing she told

> that since Jessie's curvature is so high it wouldn't be helpful to

> Jessie as they are treating it as congentile. It seems that the

> doctors are believing with the other xrays there is a good

> possiblility of a reason for Jessie's scoliosis. When asked

> her why the CT scan wasn't done in September, she had no answer.

> and I are sitting here talking and think it is a real good

> idea to take Jessie elsewhere. It bothers me terribly that this

> nurse had no clue as to what Cobb and RVAD was. I guess the only

> good thing I can think of out of all this is that Jessie won;t

have

> the surgery they are so anxious to do until after court. It sure

> makes us want to just fly down there, swoop our little man up and

> bring him home for better care. Is it January 17, 2006 yet? That

is

> our court date. If we don't get custody it is hard to say what his

> mother will have done.

> Jackie~

>