Re: New to group; Malcolm got plastered today

[Guest guest]

Hi ,

I'm glad that you were able to go to Savannah instead of travelling

to Atlanta for treatment. Keep your chin up! The banding time goes

by really fast and the babies look so darn cute in them! Keep us

posted please

Natasha

>

> My name is . My baby Malcolm was plastered for his STARband

today in Savannah. I bummed we have to do it. I certainly wouldn't

do it for cosmetic reasons. It is a definitely commitment.

>

> Malcolm was born at 26 weeks, 1 lb 9.5 oz. He's had a host of

prematurity issues and spent 5 months in the NICU/PICU. His greatest

hurdle was getting of the vent because of tracheal stenosis.

Basically his trachea swelled shut so even though his lungs were

good enough to breath on their own, air couldn't pass through his

trachea. He was trached on 5/11. Retinopathy of prematurity laser

surgery on 5/13 (that was a bad week). 2 bouts of MRSA pneumonia and

1 strep-B sepsis. 7/15: bilateral inguinal hernia repair, Nissen

fundoplication, G-tube insertion. He also had grades 1 and 2 IVH and

has PVL.

>

> Malcolm is 11 months old today and 18 pounds. He still has the

trach and is on low amounts of humidified oxygen. He's not quite

strong enough to sit up, but is getting good head control. He hates

tummy time but is getting better.

>

> We have worked hard on positional sleeping but 5 months in the

hospital and slow muscle strength development, plus some torticollis

has resulted in moderate plagiocephaly. His head is bumped on the

back left and has just developed the beginnings of a bump on his

right forehead. The orthotist did point out the ear uneveness (on

the back/front plane) I was unable to see before.

>

> We will get our STARband next week. Oh, I dread it, but am glad we

can do what's right for him.

>

> I'm attaching a picture of Malcolm.

>

> Cheers,

>

> St. Simons Is, GA

>

[Guest guest]

Hi ,

I'm glad that you were able to go to Savannah instead of travelling

to Atlanta for treatment. Keep your chin up! The banding time goes

by really fast and the babies look so darn cute in them! Keep us

posted please

Natasha

>

> My name is . My baby Malcolm was plastered for his STARband

today in Savannah. I bummed we have to do it. I certainly wouldn't

do it for cosmetic reasons. It is a definitely commitment.

>

> Malcolm was born at 26 weeks, 1 lb 9.5 oz. He's had a host of

prematurity issues and spent 5 months in the NICU/PICU. His greatest

hurdle was getting of the vent because of tracheal stenosis.

Basically his trachea swelled shut so even though his lungs were

good enough to breath on their own, air couldn't pass through his

trachea. He was trached on 5/11. Retinopathy of prematurity laser

surgery on 5/13 (that was a bad week). 2 bouts of MRSA pneumonia and

1 strep-B sepsis. 7/15: bilateral inguinal hernia repair, Nissen

fundoplication, G-tube insertion. He also had grades 1 and 2 IVH and

has PVL.

>

> Malcolm is 11 months old today and 18 pounds. He still has the

trach and is on low amounts of humidified oxygen. He's not quite

strong enough to sit up, but is getting good head control. He hates

tummy time but is getting better.

>

> We have worked hard on positional sleeping but 5 months in the

hospital and slow muscle strength development, plus some torticollis

has resulted in moderate plagiocephaly. His head is bumped on the

back left and has just developed the beginnings of a bump on his

right forehead. The orthotist did point out the ear uneveness (on

the back/front plane) I was unable to see before.

>

> We will get our STARband next week. Oh, I dread it, but am glad we

can do what's right for him.

>

> I'm attaching a picture of Malcolm.

>

> Cheers,

>

> St. Simons Is, GA

>

[Guest guest]

Hi ,

Welcome to the group. It sounds like you have a little miracle boy on

your hands. :-) He sure has been through a lot, he's some fighter.

I think you're going to be pleasantly surprised by how cute Malcolm

looks in his band!

Can you please post his picture in the photos section in the M folder.

Those of us who don't receive emails from the group can't see his

picture as doesn't allow attachments. I'd so love to see his

picture. Let us know when his band is in and how he's doing.

Take care,

>

> My name is . My baby Malcolm was plastered for his STARband

today in Savannah. I bummed we have to do it. I certainly wouldn't do

it for cosmetic reasons. It is a definitely commitment.

>

> Malcolm was born at 26 weeks, 1 lb 9.5 oz. He's had a host of

prematurity issues and spent 5 months in the NICU/PICU. His greatest

hurdle was getting of the vent because of tracheal stenosis. Basically

his trachea swelled shut so even though his lungs were good enough to

breath on their own, air couldn't pass through his trachea. He was

trached on 5/11. Retinopathy of prematurity laser surgery on 5/13

(that was a bad week). 2 bouts of MRSA pneumonia and 1 strep-B sepsis.

7/15: bilateral inguinal hernia repair, Nissen fundoplication, G-tube

insertion. He also had grades 1 and 2 IVH and has PVL.

>

> Malcolm is 11 months old today and 18 pounds. He still has the trach

and is on low amounts of humidified oxygen. He's not quite strong

enough to sit up, but is getting good head control. He hates tummy

time but is getting better.

>

> We have worked hard on positional sleeping but 5 months in the

hospital and slow muscle strength development, plus some torticollis

has resulted in moderate plagiocephaly. His head is bumped on the back

left and has just developed the beginnings of a bump on his right

forehead. The orthotist did point out the ear uneveness (on the

back/front plane) I was unable to see before.

>

> We will get our STARband next week. Oh, I dread it, but am glad we

can do what's right for him.

>

> I'm attaching a picture of Malcolm.

>

> Cheers,

>

> St. Simons Is, GA

>

[Guest guest]

Hi ,

Welcome to the group. It sounds like you have a little miracle boy on

your hands. :-) He sure has been through a lot, he's some fighter.

I think you're going to be pleasantly surprised by how cute Malcolm

looks in his band!

Can you please post his picture in the photos section in the M folder.

Those of us who don't receive emails from the group can't see his

picture as doesn't allow attachments. I'd so love to see his

picture. Let us know when his band is in and how he's doing.

Take care,

>

> My name is . My baby Malcolm was plastered for his STARband

today in Savannah. I bummed we have to do it. I certainly wouldn't do

it for cosmetic reasons. It is a definitely commitment.

>

> Malcolm was born at 26 weeks, 1 lb 9.5 oz. He's had a host of

prematurity issues and spent 5 months in the NICU/PICU. His greatest

hurdle was getting of the vent because of tracheal stenosis. Basically

his trachea swelled shut so even though his lungs were good enough to

breath on their own, air couldn't pass through his trachea. He was

trached on 5/11. Retinopathy of prematurity laser surgery on 5/13

(that was a bad week). 2 bouts of MRSA pneumonia and 1 strep-B sepsis.

7/15: bilateral inguinal hernia repair, Nissen fundoplication, G-tube

insertion. He also had grades 1 and 2 IVH and has PVL.

>

> Malcolm is 11 months old today and 18 pounds. He still has the trach

and is on low amounts of humidified oxygen. He's not quite strong

enough to sit up, but is getting good head control. He hates tummy

time but is getting better.

>

> We have worked hard on positional sleeping but 5 months in the

hospital and slow muscle strength development, plus some torticollis

has resulted in moderate plagiocephaly. His head is bumped on the back

left and has just developed the beginnings of a bump on his right

forehead. The orthotist did point out the ear uneveness (on the

back/front plane) I was unable to see before.

>

> We will get our STARband next week. Oh, I dread it, but am glad we

can do what's right for him.

>

> I'm attaching a picture of Malcolm.

>

> Cheers,

>

> St. Simons Is, GA

>

[Guest guest]

Hi,

You both have definitly been through a lot. My son was a 30 week

preemie with a 6 week hospital stay. He has a PDA that is being

monitored by a pediatric cardiologist. He also came home from the NICU

with flatness. He was casted for his Starband last Wednesday. My older

son wore a DOCband for three months so I have been through this

before. I wish you the best.

Lee/CA

Nate - graduated 2/04

Ben - casted 2/06

[Guest guest]

Hi,

You both have definitly been through a lot. My son was a 30 week

preemie with a 6 week hospital stay. He has a PDA that is being

monitored by a pediatric cardiologist. He also came home from the NICU

with flatness. He was casted for his Starband last Wednesday. My older

son wore a DOCband for three months so I have been through this

before. I wish you the best.

Lee/CA

Nate - graduated 2/04

Ben - casted 2/06

[Guest guest]

-Well it sounds like you guys have already made it through a

lot and you must have a strong little guy. I was bummed out at first

about my daughter Isabelle having to get a helmet, but now that I

see she has adjusted to it just fine ( it's only been a week ) it

makes me feel better about it. Just know that you are doing what is

best for Malcolm. The helmets really aren't that bad at all.

Good Luck with everything

Isabelle 6mos STARband 1/31/06

-- In Plagiocephaly , <turnerne@...> wrote:

>

> My name is . My baby Malcolm was plastered for his STARband

today in Savannah. I bummed we have to do it. I certainly wouldn't

do it for cosmetic reasons. It is a definitely commitment.

>

> Malcolm was born at 26 weeks, 1 lb 9.5 oz. He's had a host of

prematurity issues and spent 5 months in the NICU/PICU. His greatest

hurdle was getting of the vent because of tracheal stenosis.

Basically his trachea swelled shut so even though his lungs were

good enough to breath on their own, air couldn't pass through his

trachea. He was trached on 5/11. Retinopathy of prematurity laser

surgery on 5/13 (that was a bad week). 2 bouts of MRSA pneumonia and

1 strep-B sepsis. 7/15: bilateral inguinal hernia repair, Nissen

fundoplication, G-tube insertion. He also had grades 1 and 2 IVH and

has PVL.

>

> Malcolm is 11 months old today and 18 pounds. He still has the

trach and is on low amounts of humidified oxygen. He's not quite

strong enough to sit up, but is getting good head control. He hates

tummy time but is getting better.

>

> We have worked hard on positional sleeping but 5 months in the

hospital and slow muscle strength development, plus some torticollis

has resulted in moderate plagiocephaly. His head is bumped on the

back left and has just developed the beginnings of a bump on his

right forehead. The orthotist did point out the ear uneveness (on

the back/front plane) I was unable to see before.

>

> We will get our STARband next week. Oh, I dread it, but am glad we

can do what's right for him.

>

> I'm attaching a picture of Malcolm.

>

> Cheers,

>

> St. Simons Is, GA

>

[Guest guest]

-Well it sounds like you guys have already made it through a

lot and you must have a strong little guy. I was bummed out at first

about my daughter Isabelle having to get a helmet, but now that I

see she has adjusted to it just fine ( it's only been a week ) it

makes me feel better about it. Just know that you are doing what is

best for Malcolm. The helmets really aren't that bad at all.

Good Luck with everything

Isabelle 6mos STARband 1/31/06

-- In Plagiocephaly , <turnerne@...> wrote:

>

> My name is . My baby Malcolm was plastered for his STARband

today in Savannah. I bummed we have to do it. I certainly wouldn't

do it for cosmetic reasons. It is a definitely commitment.

>

> Malcolm was born at 26 weeks, 1 lb 9.5 oz. He's had a host of

prematurity issues and spent 5 months in the NICU/PICU. His greatest

hurdle was getting of the vent because of tracheal stenosis.

Basically his trachea swelled shut so even though his lungs were

good enough to breath on their own, air couldn't pass through his

trachea. He was trached on 5/11. Retinopathy of prematurity laser

surgery on 5/13 (that was a bad week). 2 bouts of MRSA pneumonia and

1 strep-B sepsis. 7/15: bilateral inguinal hernia repair, Nissen

fundoplication, G-tube insertion. He also had grades 1 and 2 IVH and

has PVL.

>

> Malcolm is 11 months old today and 18 pounds. He still has the

trach and is on low amounts of humidified oxygen. He's not quite

strong enough to sit up, but is getting good head control. He hates

tummy time but is getting better.

>

> We have worked hard on positional sleeping but 5 months in the

hospital and slow muscle strength development, plus some torticollis

has resulted in moderate plagiocephaly. His head is bumped on the

back left and has just developed the beginnings of a bump on his

right forehead. The orthotist did point out the ear uneveness (on

the back/front plane) I was unable to see before.

>

> We will get our STARband next week. Oh, I dread it, but am glad we

can do what's right for him.

>

> I'm attaching a picture of Malcolm.

>

> Cheers,

>

> St. Simons Is, GA

>

[Guest guest]

,

The casting is the worst part!

I'm glad Natasha and were able to help you out and get you to a

closer clinic!

Let us know when Malcolm gets his band.

[Guest guest]

,

The casting is the worst part!

I'm glad Natasha and were able to help you out and get you to a

closer clinic!

Let us know when Malcolm gets his band.

[Guest guest]

,

I;m glad you were able to go to Savannah - much closer. Wow you got

that done fast. You were just researching a couple weeks ago. You

are on your way - let us know when it comes in.

mom to na, 2 1/2 years, DOC Grad, tort Resolved

Kiersten, 8 months, DOC Band 1/10/06, Tort

www.thefilyaws.com

>

> My name is . My baby Malcolm was plastered for his STARband

today in Savannah. I bummed we have to do it. I certainly wouldn't do

it for cosmetic reasons. It is a definitely commitment.

>

> Malcolm was born at 26 weeks, 1 lb 9.5 oz. He's had a host of

prematurity issues and spent 5 months in the NICU/PICU. His greatest

hurdle was getting of the vent because of tracheal stenosis.

Basically his trachea swelled shut so even though his lungs were good

enough to breath on their own, air couldn't pass through his trachea.

He was trached on 5/11. Retinopathy of prematurity laser surgery on

5/13 (that was a bad week). 2 bouts of MRSA pneumonia and 1 strep-B

sepsis. 7/15: bilateral inguinal hernia repair, Nissen

fundoplication, G-tube insertion. He also had grades 1 and 2 IVH and

has PVL.

>

> Malcolm is 11 months old today and 18 pounds. He still has the

trach and is on low amounts of humidified oxygen. He's not quite

strong enough to sit up, but is getting good head control. He hates

tummy time but is getting better.

>

> We have worked hard on positional sleeping but 5 months in the

hospital and slow muscle strength development, plus some torticollis

has resulted in moderate plagiocephaly. His head is bumped on the

back left and has just developed the beginnings of a bump on his

right forehead. The orthotist did point out the ear uneveness (on the

back/front plane) I was unable to see before.

>

> We will get our STARband next week. Oh, I dread it, but am glad we

can do what's right for him.

>

> I'm attaching a picture of Malcolm.

>

> Cheers,

>

> St. Simons Is, GA

>

[Guest guest]

,

I;m glad you were able to go to Savannah - much closer. Wow you got

that done fast. You were just researching a couple weeks ago. You

are on your way - let us know when it comes in.

mom to na, 2 1/2 years, DOC Grad, tort Resolved

Kiersten, 8 months, DOC Band 1/10/06, Tort

www.thefilyaws.com

>

> My name is . My baby Malcolm was plastered for his STARband

today in Savannah. I bummed we have to do it. I certainly wouldn't do

it for cosmetic reasons. It is a definitely commitment.

>

> Malcolm was born at 26 weeks, 1 lb 9.5 oz. He's had a host of

prematurity issues and spent 5 months in the NICU/PICU. His greatest

hurdle was getting of the vent because of tracheal stenosis.

Basically his trachea swelled shut so even though his lungs were good

enough to breath on their own, air couldn't pass through his trachea.

He was trached on 5/11. Retinopathy of prematurity laser surgery on

5/13 (that was a bad week). 2 bouts of MRSA pneumonia and 1 strep-B

sepsis. 7/15: bilateral inguinal hernia repair, Nissen

fundoplication, G-tube insertion. He also had grades 1 and 2 IVH and

has PVL.

>

> Malcolm is 11 months old today and 18 pounds. He still has the

trach and is on low amounts of humidified oxygen. He's not quite

strong enough to sit up, but is getting good head control. He hates

tummy time but is getting better.

>

> We have worked hard on positional sleeping but 5 months in the

hospital and slow muscle strength development, plus some torticollis

has resulted in moderate plagiocephaly. His head is bumped on the

back left and has just developed the beginnings of a bump on his

right forehead. The orthotist did point out the ear uneveness (on the

back/front plane) I was unable to see before.

>

> We will get our STARband next week. Oh, I dread it, but am glad we

can do what's right for him.

>

> I'm attaching a picture of Malcolm.

>

> Cheers,

>

> St. Simons Is, GA

>