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Vinny Test on Monday

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oh, its awesome to hear that vinny is cruising and crawling!!! way to go!!!

let us know what happens with his test!

chrystal

chrystine almost 15 mos. CHaRGE, arleigh 4. and baby silas

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Hello to everyone!

Thanks to the suggestions on this amazing listserv, I asked about the

issue of the vascular ring at Vinny's last cardiology appointment (last

month). His cardiology team is so respectful and open to our questions

and concerns. We are so lucky! Unfortunately, there is now a rather

large concern that Vinny may have one. When they did his echo, they

could not see his left subclavian artery. Additionally, he wheezes

constantly (and is on Pulmicort and Xopenex). His swallow has been

getting weaker in the last 2 months. So, he is having the modified

barium swallow study on Monday the 29th. Keep your fingers crossed

that it isn't the dreaded vascular ring becasue I cannot imagine him

having to undergo ANOTHER surgery. I will certainly keep you all

posted.

Good news, though... Vinny has mastered the army crawl and can now

cruise around furniture by walking and holding on to whatever he can.

It is so fun to watch!! He says Mama, Dada, up, Ah ah ah, and Uh-oh on

a regular basis and is learning some signs, too. Life will be so good

if we can just get good news next Monday! :)

I am really looking forward to meeting everyone this July!

ina, mom to Luca (3.5) & Vinny (1.5 w/ cHARgE)

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well thats y we all love it here lol

>

> Hello to everyone!

>

> Thanks to the suggestions on this amazing listserv, I asked about the

> issue of the vascular ring at Vinny's last cardiology appointment (last

> month). His cardiology team is so respectful and open to our questions

> and concerns. We are so lucky! Unfortunately, there is now a rather

> large concern that Vinny may have one. When they did his echo, they

> could not see his left subclavian artery. Additionally, he wheezes

> constantly (and is on Pulmicort and Xopenex). His swallow has been

> getting weaker in the last 2 months. So, he is having the modified

> barium swallow study on Monday the 29th. Keep your fingers crossed

> that it isn't the dreaded vascular ring becasue I cannot imagine him

> having to undergo ANOTHER surgery. I will certainly keep you all

> posted.

>

> Good news, though... Vinny has mastered the army crawl and can now

> cruise around furniture by walking and holding on to whatever he can.

> It is so fun to watch!! He says Mama, Dada, up, Ah ah ah, and Uh-oh on

> a regular basis and is learning some signs, too. Life will be so good

> if we can just get good news next Monday! :)

>

> I am really looking forward to meeting everyone this July!

>

> ina, mom to Luca (3.5) & Vinny (1.5 w/ cHARgE)

>

>

>

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Dear ina,

I am SOOOO impressed with your cardiology team. If there is one thing I really

love, it is 'respectful' and 'open'. Well, I guess that's two things. :-)

No matter what the results, at least you know everyone is very carefully

evaluating the symptoms. That is just amazing in my book.

If it turns out that Vinny has a vascular ring, it could be that at least part

of the asthma would disappear when it is repaired, That would be a tremendous

blessing.

In our case, the vascular ring surgery was not as hard on Kendra as the

fundoplication or cleft repair. She was so amazingly full of energy after the

surgery that she came home 5 days later and immediately crawled to the top of

the staircase. This is something she had not tried before. She had a

relatively easy recovery and no big difficulties after she was back at home.

For Kendra, the defining test of vascular ring was an angiogram. Her vascular

ring was not visible on ECHO. SIgns of it were clear through barium swallow (a

definite hairpin turn in the esophagus), and bronchoscopy (subglottic

narrowing).

Please keep us posted after the tests.

We're thinking all good and positive thoughts.

Mom to Kendra, and Camille

Vinny Test on Monday

Hello to everyone!

Thanks to the suggestions on this amazing listserv, I asked about the

issue of the vascular ring at Vinny's last cardiology appointment (last

month). His cardiology team is so respectful and open to our questions

and concerns. We are so lucky! Unfortunately, there is now a rather

large concern that Vinny may have one. When they did his echo, they

could not see his left subclavian artery. Additionally, he wheezes

constantly (and is on Pulmicort and Xopenex). His swallow has been

getting weaker in the last 2 months. So, he is having the modified

barium swallow study on Monday the 29th. Keep your fingers crossed

that it isn't the dreaded vascular ring becasue I cannot imagine him

having to undergo ANOTHER surgery. I will certainly keep you all

posted.

Good news, though... Vinny has mastered the army crawl and can now

cruise around furniture by walking and holding on to whatever he can.

It is so fun to watch!! He says Mama, Dada, up, Ah ah ah, and Uh-oh on

a regular basis and is learning some signs, too. Life will be so good

if we can just get good news next Monday! :)

I am really looking forward to meeting everyone this July!

ina, mom to Luca (3.5) & Vinny (1.5 w/ cHARgE)

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ina,

How nice it must be to watch Vinny crawling around-and to hear his little

voice!! Yippee!! Good luck at the appt., Hopefully, all will be good news.

pam

>

>

--

Pamela J. , M.A., CAGS

Licensed Educational Psychologist

Deafblind Program

Perkins School for the Blind

175 N. Beacon St.

Watertown, MA 02472

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ina-

WOW on that great news!!!!! We will be pulling ofr you guys during

the upcoming tests.

Janay

Rasha's Mom

>

> Hello to everyone!

>

> Thanks to the suggestions on this amazing listserv, I asked about

the

> issue of the vascular ring at Vinny's last cardiology appointment

(last

> month). His cardiology team is so respectful and open to our

questions

> and concerns. We are so lucky! Unfortunately, there is now a

rather

> large concern that Vinny may have one. When they did his echo,

they

> could not see his left subclavian artery. Additionally, he

wheezes

> constantly (and is on Pulmicort and Xopenex). His swallow has

been

> getting weaker in the last 2 months. So, he is having the

modified

> barium swallow study on Monday the 29th. Keep your fingers

crossed

> that it isn't the dreaded vascular ring becasue I cannot imagine

him

> having to undergo ANOTHER surgery. I will certainly keep you all

> posted.

>

> Good news, though... Vinny has mastered the army crawl and can now

> cruise around furniture by walking and holding on to whatever he

can.

> It is so fun to watch!! He says Mama, Dada, up, Ah ah ah, and Uh-

oh on

> a regular basis and is learning some signs, too. Life will be so

good

> if we can just get good news next Monday! :)

>

> I am really looking forward to meeting everyone this July!

>

> ina, mom to Luca (3.5) & Vinny (1.5 w/ cHARgE)

>

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ina-

I certainly hope the test goes well. I know you're dreading another

diagnosis and something that needs surgical repair. But answers are so

important. An answer to the problems Vinny has been having will be so great

- especially if it's an answer that has a solution. If it's not a vascular

ring, you'll be left wondering what it is and how to solve it. So. I hope

you get answers. Easy answers would be best, but answers.

Good luck-

Michele W

Aubrie's mom

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