Sierra update

[Guest guest]

Ok some old bottom half new info .... it turns out we are not in the clear

.....

6/5/06

OK here is what is going on now ...... Monday morning Sierra and I had to go

somewhere so I put her dress on so of course I could see her chest and

everything looked normal, then just a few hours later once we got home Sierra's

P/T came by for her visit and called me right away and said look at her chest

... that's NOT Normal, the whole left side of her chest has sunk in ...... I

called her DR right away and they could not get us in till today at 4pm -

unless she was having respiratory distress then we would just meet him at the

hospital, so she has been hooked up to her pulse ox ever since and she does not

appear to be having any issues .... for the first few hours yesterday when it

first happened her O2 would go from 98% then drop to 91% or 93% but then it

would go right back up .... it would just keep jumping around but her pulse

was normal ..... we did breathing treatments ....... her dad and I slept on

shifts last night, he slept 4 then I slept 4 .... She did not have any problems

during the night and none today but it is still very sunk and uneven, her

O/T stopped by this morning and said she had never seen anything like this that

was not bothering the child .... Sierra is eating and playing her computer

just being herself so we are not sure what is going on ........

6/6/06

We took Sierra to see her Ped DR at 4pm and he thought by looking at her

that her Scoliosis had set in ... (which is the inevitable with SMA) so we were

like OK so now what ... from the DR's office we took Sierra over to one of

our local hospital's for a Spine X-ray .... We will know the results tomorrow.

6/7/06

The results are back, and Yes for sure it is Neuro Muscular Scoliosis, but

not a curve even worse ... her spine is twisting ... and from the twisting it

is causing her rib cage and everything to shift to the left side which is

where her lungs and her heart is so we were told that we have to get in to see

a

surgeon ASAP, so Sierra has an Orthopedic apt on Tues. June 20th and from

there they will help us find a surgeon from Arnold Palmer that has operated on

other SMA kids (and if we cannot find one then we will have to go out of

state to find a DR that knows about her disease and the seriousness of SMA and

surgery).

Please keep Sierra in your Prayers and I will keep the site updated as we

learn more!

Here are some links explaining better what Sierra is dealing with ....

_http://www.curesma.org/grayhack02.shtml_

(http://www.curesma.org/grayhack02.shtml)

_http://www.mdas.org.sg/scoliosis.shtml_

(http://www.mdas.org.sg/scoliosis.shtml)

Scoliosis: The Facts

• Scoliosis isn't a disease.

• Scoliosis is a curvature of the spine. All spines have curves, but it's

referred to as scoliosis when there are abnormal side-to-side curves in the

spinal column.

• The curve can either be a 'C' shape or an 'S' Shape. As the spine curves

to the side the ribs consequently twist, causing a hump on one side of the

spine.

(Sierra is the S shape)

• Over 80% of cases are idiopathic, which means that there is no known

cause. Other known causes can include congenital spine deformities, genetic

condi

tions, cerebral palsy, spina bifida, muscular dystrophy.

• There is no cure for scoliosis, only corrective treatment for the twisting

and curving spine.

• There are three basic types of treatments for scoliosis: observation,

orthopaedic bracing, and surgery.