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> > I wish we could just eat blindly for the rest of our lives, but

at

> > least it's a lot easier for us to keep those pounds from coming

> > back. We really only have to make small adjustments to keep it

in

> > check. I'm so grateful for this surgery!

> >

> > Hugs!

> > Tracey

> ====================

>

> Tracey you are marching into this new year with such a great surge

> of positive energy! I love it!!

>

> Jo

****

Tracey,

I am so proud of you. This is what I need to do...more exercise. And

keep the good eating going. You encourage me...

I will start again on Monday...

thanks

love you

Sharon in Onyx

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> That does sound good! But, you didn't do a pinch of sugar. My

Italian next door neighbour (Who lived to be 89 and Was an old woman

when I was born!) said you never cook with tomatoes unless you add a

pinch of sugar to cut the acid.

> >

>

> Was she kin to my grandmother?? ...LOL.

> Mel(who now uses

nutrasweet)

She was my Grandma...lol, I mean Nona....My Nona always put a pinch

or two of sugar in her tomato sauce when she made it. She also

cooked a wonderful Chicken in Wine. We grandkids all thought we

could get drunk on it. It was so gooood. We also got wine with our

dinners with 7up in it. Gotta love us Italians, we know how to eat

and drink...lol

Sharon in Onyx

who is 1/2 Italian and 1/2 Irish....no temper here...lol

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Hi Sharon!

I'm proud of YOU! Hey, you took a vacation for the holidays and now

you're going back to good eating. And thankfully, for us, that

means GOOD eating! I just made a tomato casserole today and I also

fried some veggies and soy chicken for lunch during the week. I

can't wait to dip into that casserole! Yumm!

Love you back!

Tracey

> ****

> Tracey,

> I am so proud of you. This is what I need to do...more exercise.

And

> keep the good eating going. You encourage me...

> I will start again on Monday...

> thanks

> love you

> Sharon in Onyx

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  • 4 weeks later...

> > > turning 46 tomorrow

> =====================

>

> Tracey...I'm 46!! It's not all it's cracked up to be so I'd advise

> staying 45...lol...Happy birthday Cutie!

>

> Jo

Mere babies! I tell you....

Sharon in Onyx who will be 49 in April!

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Thank you so much, Ann! I took the day off and am going to spend

some quality time with my hubby. :)

Hugs!

Tracey

> In a message dated 1/25/2004 2:00:45 PM Pacific Standard Time,

> snurfles2@c... writes:

> > turning 46 tomorrow

>

>

> Happy birthday, Tracey! I hope you have a wonderful day.

>

> Hugs and blessings, Ann

>

>

>

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Awe, Jo! It's okay that you're older than me! I promise not to

make grandma jokes about you. ;) Seriously, since the day my hubby

and I got married, getting older hasn't bothered me. There's

something very peaceful in finding your soul mate.

Thanks for the Birthday wishes, my friend!

Hugs!

Tracey

> > > turning 46 tomorrow

> =====================

>

> Tracey...I'm 46!! It's not all it's cracked up to be so I'd

advise

> staying 45...lol...Happy birthday Cutie!

>

> Jo

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Sharon, honey, you are the youngest looking one of the three of us

so I consider you to be the " baby sister " . LOL!

Hugs and love,

Tracey

> > > > turning 46 tomorrow

> > =====================

> >

> > Tracey...I'm 46!! It's not all it's cracked up to be so I'd

advise

> > staying 45...lol...Happy birthday Cutie!

> >

> > Jo

>

> Mere babies! I tell you....

> Sharon in Onyx who will be 49 in April!

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Thank you, Pat! I intend to thoroughly enjoy myself! (And if I'm

lucky, get some nooky first thing in the morning. My favorite time

to make love!)

:)

Hugs!

Tracey

> HaPpY bIrThDaY to you,HaPpY bIrThDaY to you,HaPpY bIrThDaY dear

> Tracey,HaPpY bIrThDaY to YOU!!!!!

> See I can sing to you even if it is off key...LOL hope you have

> a great one tomorrow.

> God bless,

> Pat

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> Sharon, honey, you are the youngest looking one of the three of us

> so I consider you to be the " baby sister " . LOL!

>

> Hugs and love,

> Tracey

Oh you sweet talker you! Hope your birthday is the best ever, and

enjoy your quality time with that cutie you married.

love you

Sharon in Onyx

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> Sharon, honey, you are the youngest looking one of the three of us

> so I consider you to be the " baby sister " . LOL!

>

> Hugs and love,

> Tracey

Oh you sweet talker you! Hope your birthday is the best ever, and

enjoy your quality time with that cutie you married.

love you

Sharon in Onyx

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LOL! Not even close, Kim! I wouldn't even attempt to reach the

infamous status of our sweet Sindee! :o) But, I do like nooky with

my hubby. (Just not in public places!)

Tracey

> Thank you, Pat! I intend to thoroughly enjoy myself! (And if I'm

> lucky, get some nooky first thing in the morning. My favorite

time

> to make love!)

>

> :)

>

> Hugs!

> Tracey

>

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  • 2 weeks later...

Hi Jo!

Yup, I'm still having my Nectar shakes everyday. Sometimes twice a

day. I was a bad girl yesterday and made some chocolate chip

cookies for a guy at work who is producing a commercial for me for

free and I totally enjoyed the dough, as well as two of the cookies

fresh out of the oven. Yes, I suffered for it last night! But, oh

man, it was so worth it! I haven't made chocolate chip cookies from

scratch in ages. I forgot how incredibly wonderful freshly mixed

cookie dough is! But, that's it for me for awhile. I've actually

gotten my gas issues under control and do NOT want to go back to the

way it was. Besides, I think my husband would kick me out if I

did! (Just kidding!)

Hugs!

Tracey

> No gas from it and it makes GREAT

> > sandwiches!

>

> Tracey this is fantastic news for you!!!! I know that gas has

been

> a major issue. Aren't sandwiches wonderful...especially in the

> summer months. I bet it sure makes packing a lunch sooooo much

> easier. I'm glad this is working out for you. Are you still

doing

> your Necter Shakes?

>

> Jo

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  • 11 months later...

,

Thank you so much for your post.

le's measurement at birth xray was put at 38

degrees (that is what is written on the film). Our

ortho took this measurement. At her last set of

xrays, which was in November, the new ortho stated it

was 33 degrees - so that explains the difference..

different doctors, different films. He did state that

it had not progressed any.

When I spoke to the nurse at the MRI regarding

sedation, she made me believe that le would be

having an I/v for sedation - no mention was made of

oral..? I'll discuss it in March with the ortho, and

mention a ped neuro too, and see what he says. I will

probably reschedule MRI at that time, she will be 8

months old then.

She is doing well - starting to sit up alone, is

cutting her first tooth (top tooth.. go figure!), is

scooting around in circles on her tummy - hasn't quite

gotten the idea of how to go forward yet! She's doing

really well, and my gosh she just melts my heart each

and every time I look at her. I've waited a long time

for this baby girl - my youngest before her is now 15!

He also has scoliosis - only picked up 18mths ago by

our Family doc. His is mild, no idea of degree of

curvature, and no outward signs that are obvious.

Anyway, I digress. Its way past my bedtime! Thanks

again for your words, advice & concern.

Tracey xo

--- ansiosamjm <usameza@...> wrote:

>

> Hi Tracey,

> I was wondering what her curve measurement was as a

> newborn as

> compared to what it is right now. They say that if

> a curve seems to

> increase that 5 degrees or so is within what could

> be considered

> error in measurement, as doctors are not machines

> and do measure

> slightly differently. I would say that if her curve

> started out at

> 20 degrees and is now 30 something, than it is

> progressing. The

> point is that if it is progressing than you will

> need to try to

> formulate an idea of why it is progressing.

>

> In my experience, neurologists have not been very

> helpful. This

> may be due to the ones I have seen, however. They

> can check for a

> lot of things, so it is usually on the list of

> people to see.I have

> found the pediatric neurosurgeon much more helpful.

> It may be that

> if you first get a referral to a ped. neurosurgeon,

> this dr. can

> order the MRI and then read it for you. many of the

> orthos we have

> seen have not read the MRI films of our dd properly

> either.

>

> In regards to anesthesia, I think it is scarier when

> they are

> younger, but it is easier, that is, if they don't

> quite know what is

> going on, it seems better. At 6 months, this age

> worked out the

> best of all the ages we have had to have her sedated

> or put out. She

> really didn't think anything of it. By 9 months,

> she was much more

> aware and it was harder. This has been our

> experience anyway. If

> they give her oral sedation, it is pretty much like

> having taken a

> strong cold medicine and falling asleep. I

> completely understand

> your hesitation, and it would be nice for them to

> explain what they

> are looking for. My guess would be that they are

> looking at the

> disk spaces and looking at the spinal cord to see if

> it is at all

> tethered, or if it is normal, there are various

> things that can be

> different about the spinal cord, that you would want

> to know about.

> Good luck, let us know how le is doing.

>

>

>

>

>

__________________________________________________

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  • 2 weeks later...

Hehe.. critique is good, !

I slowed the scrolling from 6 to 4 and that seemed too slow to me, so at the

moment it's set at 5, still a little fast. I was originally set at 8! LOL ..

Oh well....

Thanks for the input! Maybe I'll change it to a slide show! LOL

Hope everyone is staying warm... it's minus 22 here this morning, before the

wind chill... brrrrrrrr

Hugs,

www.BlueMountainBotanicals.com

Tracey

I checked out your website. It looks great to me, but also agree with

Colleen about slowing up the products moving across the screen. I don't

have a website and don't know if I will ever go there so I can't help

you with info. I can only " critique " (hehe).

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Hey :-)

Well, as far as any abnormalities in her vertebrae...we don't really

know anything yet as far as her back andspine are concerned. We

really thought the scoliosis at 4 mo was a non issue because it

wasn't bad and we were just going to watch and see at that time.

They were so concerned with all the other issues last year....we

were sent straight to a geneticist at Texas Children's. The FISH test

was the first thing they ran and it was normal. She was tested for

Cystic Fibrosis because we fought chronic bronchialitis for about 5

months until she seemed to finally get over it and we haven't had it

since. Her reflux is all but a memory now as she hasn't suffered from

that either again since about 6 mo of age.

They did a whole genetic map and chromosome testing and genetically

speaking....NOT ONE THING OUT OF PLACE on her. It is really a mystery

to them because her geneticist, hand surgeon and now the scoliosis

orthopedist have all said they've never seen these problems and it

NOT be genetic.

The MRI is our next step now and she will see her hand surgeon on

Thursday to start setting the surgery schedules for her hand and

fingers this coming Spring.

What boggles my mind is that when she was born we noticed a crooked

index finger on her left hand and thought it had somehow been broken

in the womb or something. Now 14 months later, we have seen more

specialists and doctors than I think I have in my entire 32 years and

an array of issues to deal with. I know God has not given us more

then I can handle though.

How old is your dd by the way?

Thanks for the reply and info!! I thought I was being ignored for

awhile :-P

Tracey

>

> Hi Tracey,

> I wrote to you before but i accidentally pressed the wrong button

> and erased the whole thing. My dd has an abnormal thumb and had a

> hypoplastic floating thumb taken off at 1 week. Are they sure

there

> are not bone abnormalities in the vertebrae? I know you mentioned

> the abnormal bones inthe arms and hands. Our dd has abnormal

> shoulder bones and an extra bone there. I did find that the curve

> gets worse when they are just walking, their muscle control and

> balance is not fully developed and in my opinion exacerbates the

> curve until after 2 years . We are also going to the geneticist

and

> are planning to do the FISH test inthe near future. Good luck with

> the MRI. have them explain what is normal and stuff on it. If you

> can.

>

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,

Well, your theory of everything else stemming from the spinal

problems actually makes some sense if you think about it. As for

Lexi's heart and kidneys...I am not really sure. Now she did have an

EKG and an echocardiogram last year to rule out Holt-Orman's syndrome.

Both of those came back perfect. Noone has ever mentioned kidney

problems..but with all her genetic testing last year and blood tests,

I know they did check on organ function and what not. So I would have

to say no based on those results.

As for her cervical vertebrae, still don't know. I just got call

from Texas Children's and they have her MRI set for February 18th, so

we will know everything we want to know about her little ol' spine at

that point.

Again...with muscle tone I draw a blank. I feel like I have dropped

the ball somewhere not knowing any of this stuff. Based on my

observation of her, I would say a little low muscle tone, but I am

confident now seeing this orthopedist about this problem, we will hit

on all these issues.

Her arms are still a big mystery to us, as we all know ( us and

Dr's ) there are problems going on there, they just weren't able to

tell last year until all the bones finished ossifying. This Dr. has

gone ahead and ordered a full body MRI I guess is what you would call

it, and we will be able to tell what is going on in every bone. Knock

on wood,,,,,,but we haven't noticed any problems with her legs. All I

notice is that she is a little pigeon toe, but I won't even worry

about that right now unless it is linked to the scoliosis.

OMG! I feel like my brain is spinning now. I am going to look at that

syndrome you mentioned above. If you have any links of pages for

that, I would like to see them if you can post them perhaps.

Thanks for all the info!

Tracey

>

> Tracey,

> My dd is 2 and a half. There was a time that she was at the 3rd

> percentile, but now she is between the 10 and 25th. She weighs 25

> pounds and is 34 inches tall. My dh is short and small so it seems

> she is following this. Gabi has abnormal teeth as well as her

hand,

> shoulder, and spine problems. Another theory that I have is that

> the problem in her spinal cord, caused the other problems to

> develop. I have no idea if this is true, but it is what I

imagine.

> For example, I wonder if the messages from the spinal cord were

> murky or something becuase all of the anomalies seem to be above

the

> point in her spinal cord where she had the collection of fluid.

Have

> they checked out Lexi's heart and kidneys? Are her cervical

> vertebrae okay? It seems to me that I read about hand

abnormalities

> more with Klippel-Feil (neck vertebrae fusions) I have found a few

> others with hand abnormalities, but not many. I do think that when

> they are just learning to walk, their curve can seem worse, but

> there are those who would argue with me. The balance is better

> after age 2 the muscles are also more developed. Does Lexi have

low

> tone? Gabi does. She also has some muscles missing in her upper

> body, or they thing she does. A pic of Gabi's MRI is posted under

> her name in the photo section. I think.

> Gotta go.

>

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has Klippel-feil in addition to the Congenital Scoliosis, torticollis, fused ribs etc. And as said, she has the lower hairline and shortened neck.

This is one of the things that is making it difficult to figure out what is the best course of action for her.

Gail

Tracey

Tracey,Please don't take me too seriously as I am just a mom. It seems that they would have noticed if Lexi had Klippel-Feil, so I am guessing that she doesn't. From what I understand the neck is short and they have a low hairline. Also, in the VACTERL diagnosis there are some who have children with abnormal thumbs. I am pretty sure that they would have looked into these though. I hope I didn't scare you. We hae been told that we may never know what is going on for sure. I also looked at Polands because it involves a missing chest muscle and the pecus carinatum that my dd has. This is just stuff that I ran across. Our PT noticed the low tone. the neurologist said her reflexes are slower or something. anyway, hope I didn't freak you out, I just know how it is to be desperate for information.

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Thanks ! In Lexi'scase, developmentally she is great...her

personality is also wonderful and she is such an outgoing, happy

child. the psychiatrist idea is not a bad one though. You are right

about all the specialists breaking it down and then leaving it to the

parent's to put it all in a package.

I cannot wait for the MRI...sounds silly but I am rather excited an

anxious for it so we can look at everything as a whole and hopefully

gain some more insight. It was scheduled for 2/18 but we are having

to reschedule it since he (ortho) has decided along with the

geneticist to do the entrie body since she has multiple bone

problems. I am understanding he was only going to the spine and

abdomen at first. I am nervous for her being sedated and all that,

but I know she will be fine and it is what needs to be done.

Thanks for the words of encouragement.

Tracey

>

> Hi Tracey,

>

> I think that one of the most important things to look at is that

the

> child is making steady developmental progress. Someone had

suggested

> to take our dd to a physiatrist because they are better at looking

> at the whole child and putting all the worries together for you.

We

> have an appointment in February with one and I am hopeful that we

> will like her. A big problem in all of this is that the ortho

tends

> to only look at the bones, the neuro at the nervous system the pedi

> is very general and usually is out of his/her element with all of

> this. It seems to get left to the mom to put it all together and

> make sure everything gets done. Since we haven't been to medical

> school, it makes it so hard.

> The MRI is hard, but if a good pediatric neurosurgeon looks at it

an

> pronounces it normal, then it is such a good sign. In our case,

the

> abnormal spinal cord diagnosis was a life changing moment, as it

> seemed to explain a lot at least to me it did. It feels very good

> to look at the brain and see how complicated it is and to hear that

> it is normal. The good thing about the MRI is that there is no

> radiation. (from what they told me) It is hard to watch them be

> sedated and all, but the information you get is worth it.

> Also, I have felt the tendency to slip into obsession about all of

> this and have tried to develop other parts of myself in order to

not

> lose myself in all of this. I am taking a class and work just a

> couple hours a week and I find that this helps. I feel that I have

> to develop other parts of myself and offer what I have to others

and

> not just my own family. This being said, it can be very lonely at

> times, I have found that it is hard for anyone else to say anything

> that I find very helpful. I recently wonder if it is that I am not

> explaining it well, or if they just can't really understand.

ANyway,

> we are here for you!

>

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