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When was born he was very hypoglycemic- his blood sugar level was 17...

the normal range is 70-130. So he was immediately placed in the NICU for

evaluations. It turns out he was born with a very rare condition called

Hyperinsulinism. His pancreas was producing too much insulin, causing his blood

sugars to be very low (it is the opposite of diabetes). The only was to treat

this condition is to remove part or most of the pancreas. He had to have 98% of

his pancreas removed. He is now doing well... but they really had to monitor is

sugars yesterday during his tenotomy. He still has an occasional low here and

there. He is feeling much better today from the tenotomy- still on tylenol with

codeine. I think babies heel much quicker than we do... I would probably be on

the floor crying- this guy is a little trooper though. He is my hero!

2/9/04 BLCF

pammi_kay pammi_kay@...> wrote:

I am so glad to hear that 's tenotomy went well. cried a

lot his first day also. We had to make a long trip home and he

shrieked on every bump on the road. It broke my heart. He did much

better the next day though. What type of surgery did he have to have

on his pancreas? I was just wondering my mother found out she had a

congenital defect with her pancreas when she was in her late

fifties.

Pam and (8-12-01)

> Hello all...

> My name is e... and my little Gracye is four weeks old today. I

> just spoke to the NICU doc, who said that the Ortho came by and said

> that Gracye's Feet are so severe that Casting will not be of help.

He

> said that she will need to have surgery to fix her feet because the

> problem is that her bones are really messed up (making the clubfeet

> severe)....

>

> I am scared... (but I know GOD has it in his hands)...

> I just want to know what I should ask when I meet with him next

week.

> I am so eager to spare her another surgery... she already had two

> since birth and will probably have another one (unrelated to

clubfeet)

> and I feel kinda sad and dissapointed.... I was hoping her feet

would

> be fixable with casts...

>

> For those moms whose babies have had surgery... what was it like?

when

> was it done? How old was your child? Please provide me with as much

> information as possible. I want to be as informed as I can be when I

> meet with him.

>

> I also want to ask for a second opinion... how do I go about

> presenting it nicely without offending him or without compromising

> Gracye's care?

>

> Please please help...

>

> thanks and God Bless

>

>

> Please feel free to email me...

> mrscajuste@y...

> ms_nancye@h...

> e and Gracye..... JUNE 2, 2004

> Billateral Club Feeet

> and other special effects ****

>

>

>

>

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Wow, you had a lot more stress than the normal clubfoot thing. 17--I

can't believe that. I was an OB nurse for 2 years and I never even

heard of anything like that. I'm so glad to hear they were able to

control that for him. Do you have to routinely check his sugar at

home? I am glad to hear he is doing well from his tenotomy.

Pam and (8-12-01)

> > Hello all...

> > My name is e... and my little Gracye is four weeks old

today. I

> > just spoke to the NICU doc, who said that the Ortho came by and

said

> > that Gracye's Feet are so severe that Casting will not be of

help.

> He

> > said that she will need to have surgery to fix her feet because

the

> > problem is that her bones are really messed up (making the

clubfeet

> > severe)....

> >

> > I am scared... (but I know GOD has it in his hands)...

> > I just want to know what I should ask when I meet with him next

> week.

> > I am so eager to spare her another surgery... she already had two

> > since birth and will probably have another one (unrelated to

> clubfeet)

> > and I feel kinda sad and dissapointed.... I was hoping her feet

> would

> > be fixable with casts...

> >

> > For those moms whose babies have had surgery... what was it like?

> when

> > was it done? How old was your child? Please provide me with as

much

> > information as possible. I want to be as informed as I can be

when I

> > meet with him.

> >

> > I also want to ask for a second opinion... how do I go about

> > presenting it nicely without offending him or without compromising

> > Gracye's care?

> >

> > Please please help...

> >

> > thanks and God Bless

> >

> >

> > Please feel free to email me...

> > mrscajuste@y...

> > ms_nancye@h...

> > e and Gracye..... JUNE 2, 2004

> > Billateral Club Feeet

> > and other special effects ****

> >

> >

> >

> >

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Guest guest

We check his BSL's about 3 times a day... but if he is under stress (like from

the tenotomy or when he gets his shots) we check it moe often. Thank god he has

been stable now. It will be a lifelong monitoring though. He could eventually

become diabetic since he is missing most of his pancreas. So we just have to

watch him. He started solid foods recently and is doing great with that. His

sugars have been anywhere from 70-140, with the occassional dip into the 60's,

but when he eats it goes right back up. He is a little trooper... let me tell

you! Thanks for showing an interest. I will keep u posted on his progress.

Tichauer

2/9/04 BLCF

pammi_kay pammi_kay@...> wrote:

Wow, you had a lot more stress than the normal clubfoot thing. 17--I

can't believe that. I was an OB nurse for 2 years and I never even

heard of anything like that. I'm so glad to hear they were able to

control that for him. Do you have to routinely check his sugar at

home? I am glad to hear he is doing well from his tenotomy.

Pam and (8-12-01)

> > Hello all...

> > My name is e... and my little Gracye is four weeks old

today. I

> > just spoke to the NICU doc, who said that the Ortho came by and

said

> > that Gracye's Feet are so severe that Casting will not be of

help.

> He

> > said that she will need to have surgery to fix her feet because

the

> > problem is that her bones are really messed up (making the

clubfeet

> > severe)....

> >

> > I am scared... (but I know GOD has it in his hands)...

> > I just want to know what I should ask when I meet with him next

> week.

> > I am so eager to spare her another surgery... she already had two

> > since birth and will probably have another one (unrelated to

> clubfeet)

> > and I feel kinda sad and dissapointed.... I was hoping her feet

> would

> > be fixable with casts...

> >

> > For those moms whose babies have had surgery... what was it like?

> when

> > was it done? How old was your child? Please provide me with as

much

> > information as possible. I want to be as informed as I can be

when I

> > meet with him.

> >

> > I also want to ask for a second opinion... how do I go about

> > presenting it nicely without offending him or without compromising

> > Gracye's care?

> >

> > Please please help...

> >

> > thanks and God Bless

> >

> >

> > Please feel free to email me...

> > mrscajuste@y...

> > ms_nancye@h...

> > e and Gracye..... JUNE 2, 2004

> > Billateral Club Feeet

> > and other special effects ****

> >

> >

> >

> >

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