added CHARGE to the website

[Guest guest]

First, thanks for the support on Luke getting a trach. I'm sure I'll have a ton

of questions to ask.

Second, Luke was recently diagnosed with CHARGE by Davenport. It's

been suspected since birth, but now someone has finally made it official. I

have added a paragraph on CHARGE to Luke's website now and I'm hoping it sounds

OK. You all have done such a good job explaining it on your websites. Thanks.

http://www.caringbridge.org/mn/lukejoseph

---------------------------------

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[Guest guest]

it is great

>

> First, thanks for the support on Luke getting a trach. I'm sure I'll

> have a ton of questions to ask.

>

> Second, Luke was recently diagnosed with CHARGE by Davenport. It's

> been suspected since birth, but now someone has finally made it official. I

> have added a paragraph on CHARGE to Luke's website now and I'm hoping it

> sounds OK. You all have done such a good job explaining it on your websites.

> Thanks.

>

>

> http://www.caringbridge.org/mn/lukejoseph

>

>

> ---------------------------------

> Low, Low, Low Rates! Check out Yahoo! Messenger's cheap PC-to-Phone call

> rates.

>

>

[Guest guest]

Hi ,

Your website is so cute and Luke is one adorable little bat. :-) I like the

pictures with bats and pumpkins appearing and reappearing.

I am wondering a little about his breathing issues. Whenever I hear of a child

with a compromised or narrow airway, I can't help but wonder if they might have

a vascular ring. Has this condition been ruled out for Luke? The main reason I

ask is that that was a primary reason Kendra needed a trach, but the vascular

ring was not diagnosed until she was two years old. Just because it would have

been a lot easier on her to have the diagnosis and repair done sooner rather

than later, i always bring it up as a possibility so that it can be ruled out.

Thanks for the wonderful update. What a relief to know that Luke can breathe

well and sleep well. Very few things can affect the immune system so

immediately and so powerfully as good breathing and sleeping. I'm reminded of

the neat stickers always posted on the machinery next to kids in the NICU

saying: Breathe!

Mom to Kendra, and Camille

added CHARGE to the website

First, thanks for the support on Luke getting a trach. I'm sure I'll have a

ton of questions to ask.

Second, Luke was recently diagnosed with CHARGE by Davenport. It's been

suspected since birth, but now someone has finally made it official. I have

added a paragraph on CHARGE to Luke's website now and I'm hoping it sounds OK.

You all have done such a good job explaining it on your websites. Thanks.

http://www.caringbridge.org/mn/lukejoseph

---------------------------------

Low, Low, Low Rates! Check out Yahoo! Messenger's cheap PC-to-Phone call

rates.

[Guest guest]

, I asked our last ENT doc about a vascular ring and right away he said no,

he doesnt have that. I have not asked our new ENT though. Lukes problems

seems to be related to his larynx and his epiglottis region. But its something

to keep in mind to ask about. Thanks.

[wkeedy@...] wrote:

Hi ,

Your website is so cute and Luke is one adorable little bat. :-) I like the

pictures with bats and pumpkins appearing and reappearing.

I am wondering a little about his breathing issues. Whenever I hear of a child

with a compromised or narrow airway, I can't help but wonder if they might have

a vascular ring. Has this condition been ruled out for Luke? The main reason I

ask is that that was a primary reason Kendra needed a trach, but the vascular

ring was not diagnosed until she was two years old. Just because it would have

been a lot easier on her to have the diagnosis and repair done sooner rather

than later, i always bring it up as a possibility so that it can be ruled out.

Thanks for the wonderful update. What a relief to know that Luke can breathe

well and sleep well. Very few things can affect the immune system so

immediately and so powerfully as good breathing and sleeping. I'm reminded of

the neat stickers always posted on the machinery next to kids in the NICU

saying: Breathe!

Mom to Kendra, and Camille

added CHARGE to the website

First, thanks for the support on Luke getting a trach. I'm sure I'll have a

ton of questions to ask.

Second, Luke was recently diagnosed with CHARGE by Davenport. It's been

suspected since birth, but now someone has finally made it official. I have

added a paragraph on CHARGE to Luke's website now and I'm hoping it sounds OK.

You all have done such a good job explaining it on your websites. Thanks.

http://www.caringbridge.org/mn/lukejoseph

---------------------------------

Low, Low, Low Rates! Check out Yahoo! Messenger's cheap PC-to-Phone call

rates.

[Guest guest]

Kendra also had problems with the epiglottis. It would not open up to allow for

breathing when she was asleep. But the major sign for her that there was a

vascular ring, was swelling and narrowing of the trachea, mostly in the

subglottic area, near the corina. What really stunned me was how many experts

looked directly at x-rays fully illustrating the problem, or looked directly at

the trachea during numerous bronchoscopies, even seeing that there was a

narrowing, but not diagnosing it correctly. At least 4 or 5 specialists did not

realize the connection between the breathing difficulties and a potential

vascular ring. They saw the narrowing because they dilated the trachea numerous

times to enlarge the narrowing. They just didn't consider the likely cause of

the narrowing.

At any rate, I'm just thrilled to know that Luke is breathing well now!!

Best to you,

added CHARGE to the website

First, thanks for the support on Luke getting a trach. I'm sure I'll have a

ton of questions to ask.

Second, Luke was recently diagnosed with CHARGE by Davenport. It's been

suspected since birth, but now someone has finally made it official. I have

added a paragraph on CHARGE to Luke's website now and I'm hoping it sounds OK.

You all have done such a good job explaining it on your websites. Thanks.

http://www.caringbridge.org/mn/lukejoseph

---------------------------------

Low, Low, Low Rates! Check out Yahoo! Messenger's cheap PC-to-Phone call

rates.

[Guest guest]

Hmmm. Makes me wonder. It's good to know not to rule that out even though he's

had several bronchoscopies. Thanks .

Keedy wrote:

Kendra also had problems with the epiglottis. It would not open up to

allow for breathing when she was asleep. But the major sign for her that there

was a vascular ring, was swelling and narrowing of the trachea, mostly in the

subglottic area, near the corina. What really stunned me was how many experts

looked directly at x-rays fully illustrating the problem, or looked directly at

the trachea during numerous bronchoscopies, even seeing that there was a

narrowing, but not diagnosing it correctly. At least 4 or 5 specialists did not

realize the connection between the breathing difficulties and a potential

vascular ring. They saw the narrowing because they dilated the trachea numerous

times to enlarge the narrowing. They just didn't consider the likely cause of

the narrowing.

At any rate, I'm just thrilled to know that Luke is breathing well now!!

Best to you,

added CHARGE to the website

First, thanks for the support on Luke getting a trach. I'm sure I'll have a ton

of questions to ask.

Second, Luke was recently diagnosed with CHARGE by Davenport. It's been

suspected since birth, but now someone has finally made it official. I have

added a paragraph on CHARGE to Luke's website now and I'm hoping it sounds OK.

You all have done such a good job explaining it on your websites. Thanks.

http://www.caringbridge.org/mn/lukejoseph

---------------------------------

Low, Low, Low Rates! Check out Yahoo! Messenger's cheap PC-to-Phone call rates.