Re: B's Orchiopexy and Laryngoscopy

[Guest guest]

hi Bo,

brag away ... i love to hear about all the things others children are

getting up too!

interested to hear about 's vocal cord being paralyzed - Josh too is

very quiet, although he is louder now than when really little he is still

quieter than most other children ... i remember when he was a baby it was

difficult to hear him call out or cry if i was more than a few metres away

....

also interested in the orchiopexy procedure, good to hear it worked out well

.... ds's got that coming up soon too.

when was 's birthday? at 25 months he must be so close in age to Josh -

born 20-8-02. Josh was so cute on his birthday - very excited about opening

the presents, and i put lollypops all over his number two birthday cake

which he loved pulling off :0)

regards, Jo

ds Ben 5yrs, ds Josh 2yrs

----- Original Message -----

> The first is that 's left vocal chord is paralyzed.

[Guest guest]

Bo,

It sounds like is growing up quickly and that you all are getting a

handle on things. It is nice to hear how happy you all seem

Jo,

It took me a minute or two to figure outhow you wrote Josh's birthday. HA

Here in America we write it 8-20-02. I couldn't figure out what 20 meant at

first. Silly me.

Happy Birthday to both and Josh.

Bonnie

[Guest guest]

Hi Jo,

was born on July 29th on the night of my birthday party (July 30th).

Lollipops. I haven't tried that one yet!

The orchiopexy was done through a small slit on that side of the lower

abdomen. They basically cut one of the main arteries to the testicle,

stretched the testicle down into the scrotum, and tied it to the bottom of

the scrotum with a suture. Since they were sitting just at the top of the

tube near the opening, the main blood vessel had to be cut to stretch the

testicle down all the way. The theory is that the other smaller blood

vessels will take over for the one that was cut. He seems to be following

the same pattern as he did on the last one. We expect him to be sore and a

little slower than usual for a couple weeks. They did each one at a

different time to assure the success of at least one. The first was

successful and this one is looking good.

The pictures of 's vocal chords show that one side is shut and sort of

grown into the walls a little bit. The surgeon thought it was possible that

trauma caused it to scar and then stop working but he barely made a noise

when he was born so we are leaning toward the palsy explanation.

Wow, just give us a reason to make the trip to New Zealand. I'm a surfer and

a friend of ours just went and said Raglan was UNBELIEVABLE. I can only

imagine. I've seen pictures in magazines. She also said it is one of the

most beautiful places on earth. I wish it wasn't such a long flight.

Interestingly enough, California receives most of our swell this time of

year from storms near you. Must be winter down there, eh?

I'd be glad to share any more information about . You can email me at

home at bo@... anytime. I'd love to see a couple pictures!

Thanks, take care, and ttys,

Bo

_____

From: Joanne Maslin

Sent: Sunday, September 19, 2004 12:53 AM

To: CHARGE

Subject: Re: B's Orchiopexy and Laryngoscopy

hi Bo,

brag away ... i love to hear about all the things others children are

getting up too!

interested to hear about 's vocal cord being paralyzed - Josh too is

very quiet, although he is louder now than when really little he is still

quieter than most other children ... i remember when he was a baby it was

difficult to hear him call out or cry if i was more than a few metres away

....

also interested in the orchiopexy procedure, good to hear it worked out well

.... ds's got that coming up soon too.

when was 's birthday? at 25 months he must be so close in age to Josh -

born 20-8-02. Josh was so cute on his birthday - very excited about opening

the presents, and i put lollypops all over his number two birthday cake

which he loved pulling off :0)

regards, Jo

ds Ben 5yrs, ds Josh 2yrs

----- Original Message -----

> The first is that 's left vocal chord is paralyzed.

Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter)

please contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

[Guest guest]

Thanks Bonnie.

We always feel like life is just a crazy, out of control freight train. I

guess we're just getting used to it. :-)

_____

From: Turk22082@...

Sent: Sunday, September 19, 2004 3:14 PM

To: CHARGE

Subject: Re: B's Orchiopexy and Laryngoscopy

Bo,

It sounds like is growing up quickly and that you all are getting a

handle on things. It is nice to hear how happy you all seem

Jo,

It took me a minute or two to figure outhow you wrote Josh's birthday. HA

Here in America we write it 8-20-02. I couldn't figure out what 20 meant at

first. Silly me.

Happy Birthday to both and Josh.

Bonnie

[Guest guest]

hi Bo,

i think there probably is some surf about at the moment - there was

something on the news about it last night (should've paid more attention!),

as for a reason, how many do you want ;0), that length of plane ride

though - pretty big!

our weather is a lovely spring day today, (we're jsut coming out of winter),

got the doors flung open, Josh has got his gumboots on and off on his new

walker - doing quite well and not falling backwards so much any more - he

wants to chase the ball and kick like his big brother so he bunts the ball

along either with the front of the walker or manages to get along side the

ball and kick out the side of the walker :0)

thanks for that info about the orchiopexy, that sounds similar to what the

surgeon described the other day - except he was talking about cutting both

at once - that had given me pause, i will talk to them about one at a time -

more of a margin of safety!

heehee, since posting the other day about how quiet Josh is, he has just

been getting louder and louder! ... he is really starting to try and say

lots of words, and lots of experimenting with different sounds, and volumes

:0) i really think he couldn't actually get louder when he was little

though.

must be just a little bit older ... there seem to be quite a number of

two year olds on the list at the moment!

hope your day is nice too, cheers,

Jo

(once my technical expert get home - dh - i'll see if he can show me how to

send pictures, again heehee)

----- Original Message -----

>

> was born on July 29th on the night of my birthday party (July 30th).

> Lollipops. I haven't tried that one yet!