Re: Sandi

[Guest guest]

In a message dated 2/11/2005 4:59:19 PM Eastern Standard Time,

sassykay59@... writes:

I purchased my own cooler

so it really keeps the cost down.

That's what our is, it hold 5 gallon jugs.

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

In a message dated 2/11/2005 2:31:59 PM Pacific Standard Time,

yhwhworship@... writes:

Of course, we have a couple of propane furnaces (they are actually very

attractive, the logs look real, I'd just like to build a nice mantle around it)

as

a back-up, so we'd probably go with electric. I'd also want to make sure

there was a good HEPA filter on it.

Wenoka,

I have an electric furnace--it's cost is very high. Just a head's up--it

is one of the most expensive ways of heating.

Sandi

[Guest guest]

In a message dated 2/11/2005 3:09:17 PM Pacific Standard Time,

BBsmart2@... writes:

I purchased my own cooler

so it really keeps the cost down.

That's what our is, it hold 5 gallon jugs.

Janet--

I use the 3 gallon--so I can still lift them. With my muscle issues, the 5

gallon ones are just too heavy. But, the water company gave me a price break

and I pay the same amount per gallon. Usually the 3 gallon ones are way more

expensive.

Sandi, Mom to , age 12. CVID, Tetrology of Fallot, Pulmonary valve

transplant (2003), Mitral valve stenosis, COPD, asthma, Carnitine deficiency,

GERD,

suspected Velocardiofacial syndrome.

[Guest guest]

In a message dated 2/11/2005 6:26:56 PM Eastern Standard Time,

sassykay59@... writes:

I use the 3 gallon--so I can still lift them. With my muscle issues, the 5

gallon ones are just too heavy.

does it for me. I could NEVER lift it!

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

Hard to say. We'd like central heat & air, but - with all the gas price

fluctuations, don't know whether to look at propane or electricity. Of course,

we have a couple of propane furnaces (they are actually very attractive, the

logs look real, I'd just like to build a nice mantle around it) as a back-up, so

we'd probably go with electric. I'd also want to make sure there was a good

HEPA filter on it.

Basically - anything but wood. It would be okay if we could get one of those

systems where the wood is burnt in an external bricked in area and the warm air

blown into the house. There's a guy down the road that has that, plus solar

panels. We'd really like to get some solar panels to help cut down on costs.

Wish we could have a do-over on building our house. We really didn't know

enough about it to be doing it ourselves. Let's just say - we'd be good

candidates for the extreme house make-over. ;-)

God bless,

Wenoka

Re: Sandi

In a message dated 2/10/2005 8:55:00 PM Pacific Standard Time,

yhwhworship@... writes:

I'm also hoping to get an under-the-sink water purification system so that we

can know for sure that Sam is only getting good water.

Wenoka,

I agree!! About a month after I moved in here, I found a door hanger on my

front door telling us that there was lead in our water!! So, since then

we've used bottled water--the type that is on a cooler. I purchased my own

cooler

so it really keeps the cost down. I think it makes such a difference for our

kids...they are sensitive to so much.

I hope you get a different heating source!! If you could, what would you

get??

Sandi, Mom to , age 12. CVID, Tetrology of Fallot, Pulmonary valve

transplant (2003), Mitral valve stenosis, COPD, asthma, Carnitine deficiency,

GERD,

suspected Velocardiofacial syndrome.

[Guest guest]

Hard to say. We'd like central heat & air, but - with all the gas price

fluctuations, don't know whether to look at propane or electricity. Of course,

we have a couple of propane furnaces (they are actually very attractive, the

logs look real, I'd just like to build a nice mantle around it) as a back-up, so

we'd probably go with electric. I'd also want to make sure there was a good

HEPA filter on it.

Basically - anything but wood. It would be okay if we could get one of those

systems where the wood is burnt in an external bricked in area and the warm air

blown into the house. There's a guy down the road that has that, plus solar

panels. We'd really like to get some solar panels to help cut down on costs.

Wish we could have a do-over on building our house. We really didn't know

enough about it to be doing it ourselves. Let's just say - we'd be good

candidates for the extreme house make-over. ;-)

God bless,

Wenoka

Re: Sandi

In a message dated 2/10/2005 8:55:00 PM Pacific Standard Time,

yhwhworship@... writes:

I'm also hoping to get an under-the-sink water purification system so that we

can know for sure that Sam is only getting good water.

Wenoka,

I agree!! About a month after I moved in here, I found a door hanger on my

front door telling us that there was lead in our water!! So, since then

we've used bottled water--the type that is on a cooler. I purchased my own

cooler

so it really keeps the cost down. I think it makes such a difference for our

kids...they are sensitive to so much.

I hope you get a different heating source!! If you could, what would you

get??

Sandi, Mom to , age 12. CVID, Tetrology of Fallot, Pulmonary valve

transplant (2003), Mitral valve stenosis, COPD, asthma, Carnitine deficiency,

GERD,

suspected Velocardiofacial syndrome.

[Guest guest]

I know. It seems like the cost of most kinds of energy is going up. That's why

we're hoping - at some point - to be able to afford solar panels to offset the

electrical costs.

We really haven't even started pricing that though. We're kind of doing it one

step at a time. Praying about it the whole way. If we could use firewood, but

have the remote site with the hot air blown in so that no smoke or ash would be

in the house, that would save a lot. I'm not sure how that set up works, but if

anyone could figure it out, it would be my hubby. I've just got to get him

through his last semester for his AS degree before I hit him with any major

projects.

There's just so many needs for the house right now. Our washer and dryer were

going bad, but my in-laws moved to our town (California to Arkansas) and bought

new ones, so we inherited their old ones, which were in good enough shape to put

off that expenditure for another couple of years.

Well, off to the in-laws for dinner. (They've been feeding us a lot this week

since I've been sick.)

God bless,

Wenoka

Re: Sandi

In a message dated 2/11/2005 2:31:59 PM Pacific Standard Time,

yhwhworship@... writes:

Of course, we have a couple of propane furnaces (they are actually very

attractive, the logs look real, I'd just like to build a nice mantle around

it) as

a back-up, so we'd probably go with electric. I'd also want to make sure

there was a good HEPA filter on it.

Wenoka,

I have an electric furnace--it's cost is very high. Just a head's up--it

is one of the most expensive ways of heating.

Sandi

[Guest guest]

In a message dated 2/11/2005 5:27:58 PM Central Standard Time,

sassykay59@... writes:

> I have an electric furnace--it's cost is very high. Just a head's up--it

> is one of the most expensive ways of heating.

>

Years ago, we lived in an apartment with everything electric, including heat.

I was afraid of the bills but it turned out that our elec. company (ComEd in

Chicago) gives a discount when you have all electric. The bills were fine, but

then again it was a one bedroom apartment.

In our current house, we have gas heat. Last year we were congratulating

ourselves on our great heating bills, the highest bill last year was $130 and we

have a pretty fair sized house with 1963 windows, in other words, not well

weatherproofed.

This year, we put plastic on many windows, re-did the weather stripping on

the bottom of the garage door (our garage is under two of the bedrooms), put

towels in front of the bottoms of all doors, re-did weather stripping under two

of the doors.

Our gas bill last month was $250, this month was $220. I about gagged. We

used almost exactly the same # of therms as last year's $130 bill, so that's how

much gas priced have raised. I'm beside myself about it!!!!!!

I have no earthly clue how much it would be to electric heat this house. In

the meantime, I've turned the thermostat down to 66 during the day, up to 69 or

so before DH gets home.

(mom to , age 6, dairy intolerant-related GERD -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other

defs... and also to Kate, age 2, more dairy intolerant but very healthy!)

[Guest guest]

, , Sandy & all...

Just wanted to say thanks. I know it has nothing to do with achalasia, but I

am just so impressed with this neurosurgeon and so relieved that my grandson

will be in such good hands. We all know how important it is to have an

experienced surgeon, and Dr. Lazareff is among the best.

It looks like they are planning to take a few weeks early now if

the lungs look fully developed, which brings the due date to as early as

June 26th!

Take Care...

Sandi

RE: Off Topic Update... I just wanted to share this news.

Hello All,

For anyone who has followed my daughters pregnancy, I wanted to share

this bit of news we got today. will be having the baby at UCLA.

She met with the neurosurgeon today who will be performing the surgery

on the baby when he is born. Dr Lazareff will be doing the

surgery. He's the doctor who did the surgery on the Guatemalan Siamese

twin girls a few years ago.

My grandbaby is in good hands!

Thank you for letting me share this bit of news with you all!

I was so excited!

Sandi

[Guest guest]

Wow! is just around the corner! I can't wait to hear how he

does!

Take care Sandi!

> , , Sandy & all...

> Just wanted to say thanks. I know it has nothing to do with

achalasia, but I

> am just so impressed with this neurosurgeon and so relieved that my

grandson

> will be in such good hands. We all know how important it is to have an

> experienced surgeon, and Dr. Lazareff is among the best.

>

> It looks like they are planning to take a few weeks early

now if

> the lungs look fully developed, which brings the due date to as early

as

> June 26th!

> Take Care...

> Sandi

[Guest guest]

Hi Sandi ....

We will all be waiting ... and praying with you.

God Bless you and your family,

Kathie from Pittsburgh

> , , Sandy & all...

> Just wanted to say thanks. I know it has nothing to do with

achalasia, but I

> am just so impressed with this neurosurgeon and so relieved that my

grandson

> will be in such good hands. We all know how important it is to have

an

> experienced surgeon, and Dr. Lazareff is among the best.

>

> It looks like they are planning to take a few weeks early

now if

> the lungs look fully developed, which brings the due date to as

early as

> June 26th!

> Take Care...

> Sandi

>

> RE: Off Topic Update... I just wanted to share this news.

>

>

>

>

>

> Hello All,

>

> For anyone who has followed my daughters pregnancy, I wanted to

share

> this bit of news we got today. will be having the baby at

UCLA.

> She met with the neurosurgeon today who will be performing the

surgery

> on the baby when he is born. Dr Lazareff will be doing the

> surgery. He's the doctor who did the surgery on the Guatemalan

Siamese

> twin girls a few years ago.

>

>

>

> My grandbaby is in good hands!

>

> Thank you for letting me share this bit of news with you all!

>

> I was so excited!

>

> Sandi

>

>

>

>

[Guest guest]

Thanks ,

Hopefully they have it all figured out now after 7 surgeries...the shunt finally seems to be working but it is not unusual for Hydrocephalus children to have many surgeries in their lifetimes. We just hope and pray it lasts a long while. It is a constant challenge and he needs to have his temperature taken daily for signs of infection and closely monitored for signs of cranial pressure. He has a physical therapist and an occupational therapist to come in once a week and he is really doing great! also has 40 hours a month of respite care now which is a great help also! I took care of week before last while my daughter attended a cosmetic's convention... he is such a sweet baby and just needs to have lots of extra TLC and cuddling...it was really great when his mommy came home...he really missed her, and so did we! (and she brought home lots of new exciting skin care goodies which I am loving!

Hugs,

Sandi

-------------- Original message --------------

Hi Sandi,

I am very happy for you and and your family with ’s progress. It sounds like he is doing very well for all he has been through. Take care,

Hugs,

[Guest guest]

Hi Sandi,

I’m

sure happy for you all that your little grandbaby has been making improvements –

big and small. They are all welcome news, no matter what!! You and your

family continue to be on my prayer list J

Love ya lots,

From:

achalasia [mailto:achalasia ] On Behalf Of holt-smith@...

Sent: October 8, 2005 12:59 PM

achalasia

Subject: Re: Sandi

Thanks ,

Hopefully they have it all figured out now after 7 surgeries...the

shunt finally seems to be working but it is not unusual for Hydrocephalus

children to have many surgeries in their lifetimes. We just hope and pray it

lasts a long while. It is a constant challenge and he needs to have his

temperature taken daily for signs of infection and closely monitored for signs

of cranial pressure. He has a physical therapist and an occupational therapist

to come in once a week and he is really doing great! also has 40

hours a month of respite care now which is a great help also! I took care

of week before last while my daughter attended a cosmetic's

convention... he is such a sweet baby and just needs to have lots of extra

TLC and cuddling...it was really great when his mommy came home...he

really missed her, and so did we! (and she brought home lots of new exciting

skin care goodies which I am loving!

Hugs,

Sandi

-------------- Original message --------------

Hi Sandi,

I am very

happy for you and and your family with ’s progress.

It sounds like he is doing very well for all he has been through.

Take care,

Hugs,

[Guest guest]

Botox...hmmmmmm I personally would go against that route. I did it and I think it hindered my first surgery.

in Suffolk

[Guest guest]

That makes me wonder. I just had a redo myotomy after the one 2 years ago did not improve swallowing. How is it decided that another myotomy will not work and an esophagectomy is the next step? My "E" is really dilated and grossly disfigured as to what my surgeon's notes stated. Just has me thinking about what makes the tide turn toward that surgery over a myotomy.......

in Suffolk

[Guest guest]

Thank you ...It was a relief to hear that! I was actually beginning to consider botox since I didn't have any other alternative!Shall we all meet at Deborah's then for a bonfire???Sandi...in No CA>> Sandi,> That bon fire idea is sounding better and better! May be worth> the trip from Michigan to join all of you ! > That is so good to hear that you can have more dilations! I know> it had to be scarey for you to think that you could only consider> esophagectomy after the last one! I hope your upcoming dilation> brings you lots of relief for a long time! Good luck!> > in Michigan>

[Guest guest]

Thank you , but no need to think that route any longer!I had surgery 3 years ago and it failed and I have been told that I am not a candidate for a repeat myotomy...and then I was under the impression that I could only have one more dilatation before having an esophagectomy, so that was the only reason why I was even considering it, but Dr Ostroff says I can have repeat dilatations as needed so I'll go this route instead!Sandi>> Botox...hmmmmmm I personally would go against that route. I did it and I > think it hindered my first surgery. > > in Suffolk>

[Guest guest]

I wonder right along with you ...but I believe it's because I had a perforation with my myotomy. I still think I would like a second opinion and I've considered seeing if I could get authorization to see Dr. Fuller or Dr. Rice to see what they have to say about having another myotomy.>> That makes me wonder. I just had a redo myotomy after the one 2 years ago > did not improve swallowing. How is it decided that another myotomy will not > work and an esophagectomy is the next step? My "E" is really dilated and > grossly disfigured as to what my surgeon's notes stated. Just has me thinking > about what makes the tide turn toward that surgery over a myotomy....... > > in Suffolk>

[Guest guest]

sholtsmith wrote:

I wonder right along with you

...but I believe it's because I had a perforation with my myotomy.

Seems like a prior perforation would factor more against having a

dilation than against having a myotomy. I wonder how that kind of

decision is made.

notan

[Guest guest]

I agree notan...

Maybe I should call and ask him this...it's been confusing me.

Sandi

Notan wrote:

Seems like a prior perforation would factor more against having a

dilation than against having a myotomy. I wonder how that kind of

decision is made.

[Guest guest]

That might be a good idea. I think it is always good to see what other doctors say with out knowing what other doctors say.

in Suffolk

[Guest guest]

-Sorry to hear your surgery is now failing you. If it is any help

dilation is so varied in how much time we all seem to buy. I only had

less that two months, however others do really well. It is hard

knowing how much time we get with any procedure, that is what makes A

so frustrating I think.

I am recovering from my myotomy at the moment and hope I get many

great years from it. But who knows? I will stay positive and look

forward to eating solids soon.

What is your next step now Sandi? Hoping it goes well for you. I know

it is disappointing and hope only the best for you.

Regards

-- In achalasia , " Holt- " <holt-

smith@c...> wrote:

>

> Hi Ann,

>

> Just jumping in with my 2 cents as per your request.

>

> I had my surgery 7 years into my symptoms and my surgery is failing

3+ years

> post surgery. I don't have answers for you but I think it's an

individual

> thing and of course it depends on the experience of the surgeon as

well.!

>

> I would think that surgery would be more successful in the early

stages, but

> sometimes I wish I had gone with dilatations first and waited

longer to have

> surgery in order to spread out my options over a longer period of

time. I

> wonder if dilatations would have successful on me pre-surgery, but

I will

> never know.

>

> Sandi

>

> _____

>

> From: achalasia [mailto:achalasia ]

On Behalf

> Of lilac_blossom_lady

> Sent: Monday, November 07, 2005 9:26 AM

> achalasia

> Subject: Re: in Alabama

>

>

>

> Dear Peggy,

>

> May I ask you how long you had symptoms before you actually had the

> surgery? From what you say, it sounds as if you are doing really

well. I'm

> just wondering if the surgery is much more likely to be successful

if you

> get it done before the achalasia progresses too much or if it can

also be

> successful after many years of symptoms.

>

> Is anyone else able to jump in here with comments on this?

>

> With love from Ann xx

>

> > >

> > > Hello Deborah:

> > >

> > > I worked in the yard today and my mind wandered to where I was

trying to

>

> > > remember what it was like to irk up my mushy meals,

the 'dreaded foam'

> > gurgling up

> > > and all the other fun little things Achalasia throws at us. You

know, it

>

> > > struck me that I had to make myself try to remember! I don't

have any

> > symptoms

> > > hanging around (well, the spasms but I feel that a small price

pay), I

> can eat

> > > well (too well: in fact, I'm joining Weight Watchers with my

skinny

> sister next

> > > week) and I can swallow with no problems. I don't know how

severe my

> > case is

> > > (was?) but I do know that the last several days before I had the

> surgery, I

> > was

> > > miserable. So, I could recommend the surgery to anyone who it's

> suggested

> > to.

> > >

> > > in Alabama

> > >

> >

>

>

>

>

[Guest guest]

Hmmmmmmm.... on to evening wear now huh. Are we going to have a fashion show? I can be a judge.....lol

in Suffolk

[Guest guest]

Left or right foot? lol

in Suffolk

[Guest guest]

oh goody I the left side. I am kind of partial to it seeing i am left handed....lol

in Suffolk