update

[Guest guest]

,

Wow - great news that 's sutures are open! I think that it is great that

Marriott was willing to give you such a good discount - and to give it to you

every time! That's awesome!

Keep us posted on how things progress!

Marci (Mom to )

Oklahoma

[Guest guest]

:

That's terrific news 's sutures are open! What a huge relief.

Now on to the casting. Good luck with it tomorrow I am sure

will do just fine . Let us know how it goes. Happy travels

Debbie Abby's mom DOCGrad

MI

>

>

> Sorry that I have taken so long to reply about 's CT scan. We

> got the results today and it was good news. Sutures are open so we

> can proceed with the Doc Band. He is getting his casting done this

> Sat. morning. FYI- I called Courtyard by Marriott and explained

that

> we were traveling for medical purposes and they gave us a $30.00

> discount on the regular room rate. They said we could have that

same

> rate every time we came. Just wanted to share that info. in case

> anyone else travels for the their band. I called many, many hotels

> and Marriott was willing to give us the biggest discount.

> - mom to

> MI

[Guest guest]

Tess,

That's great news. You've really been through a lot. I'm glad the

x-rays were found and

hope that the CT scan shows what's going on.

hugs,

a

Tess_St_Pierre@... wrote:

> Hi Friends...Dr. sent me for a CT scan today, so I don't have to worry

> about having an MRI at present. I still have to drag my right leg, but

> it hasn't gotten worse. My xrays were found and I hand-delivered them to

> the new Dr. so there will be no more mysteries!

>

> I appreciate all the information, caring & support here.

>

> Hugs of Hope...

>

> Tess

>

[Guest guest]

Hi ,

Currently I am back on the cellebrex...I told that Dr. I had been on

Prednisone but it was causing something in my mouth like thrush...she said to

take Celebrex and I told her it didn't touch it, she said..you have to take

something and upped the dosage.

anyhow...The other Dr. put me on a antibiotic for the thrush....

I guess it is just wait and see. Oh, yea my first Dr.'s office said my

appointment was " sometime " in May but wouldn't give me a date....I thought

that was just a bit odd.

No I didn't ask about that, I just feel like these Dr.'s really don't care,

take my money and be gone with you kind of thing. My husband is so

worried...I told him in my wonderful words of wisdom, I will either get

better or worse....He rolled his eyes...what can I say? LOL

Hugs, Mindy

[Guest guest]

Glad to hear that you sought a second opinion, Mindy. Do you have an

appointment with a rheumatologist yet? Did you ask this doctor about

your rash and swelling under your armpit? What meds are you currently

on?

[ ] update

> Hi everyone,

> I went to a different Dr. and she said the same....arthritis or

> connective tissue disease...which means more blood work. Now, here is

> something..my skin is burning...I have red marks all over my body and

> am getting little pin point red dots..every where and some of them

> are turning into little holes...have no clue what this is..not

> blisters or anything...just like where the little red dots were and

> not all of them...they are pretty small.Oh well, just another day in

> paradise, right!Oh, one more thing, under my right arm pit is

> swollen? any clues?

> Hope everyone is having a good hump day!!

> Hugs, Mindy

[Guest guest]

Oh Tess,

I am so sorry for the Insurance red tape. Yep it sounds like the helpful,

consumer friendly working force is at it again. I had similar woes last week

so I KNOW just where you are right now. I still say that this should be a

relatively easy problem to resolve. It was either the doctors submission of

the ICD-9 and the CPT code or it was how the insurance company processed it.

Either way, it is kinda a no brainer. Sorta like asking for a hysterectomy

for a stubbed toe!!!!!! Any time you ask for any assistance, they always

give you the impression that you are putting them out. Actually, at times

you feel that if you were talking to a computer, it really couldn't be much

worse. Perhaps the doctor gave the scheduler H**L for making the mistake,

then again, it may just be her personality. If you weren't sick before you

started this process, you sure would be feeling portly now. At least you

have the ability and knowledge to speak for yourself, what about the ones who

just say, " OK, Oh well " .

It sounds like " Stress " was the driver of that Mack Truck that hit, I would

get the license number!!!!!!!

Just keep fighting and hanging in there. I am ALWAYS waiting for the other

shoe to drop either with my insurance company or my doctors. I,

unfortunately, have learned to trust just about no one until the service is

actually delivered. They say that these " fights " make us a stronger person,

I just wish God didn't have so much faith in us!!!!!

Try to have a nice weekend. Hopefully the weather will cooperate where you

are, my friend. It is going to be HOT, HOT, HOT here in sunny south Florida,

like what else is new. We have the Air and Sea Show here this weekend, so

going outside is going to sound like you are standing in the middle of an

airfield. No Eutopia!!!!!!!!!!!!

Gentle, tender, hang in there angel hugs,

Debs in FL

[Guest guest]

Dear Debs...Yes, I wrote down the license number of that Mack Truck!!!

That just tickled me!

Where I live is near to a yearly airshow...I think it's exciting to me

cause it's only once a year. Of course there was the false alarm

terrorist thing a couple of months ago when 2 F-15's flew RIGHT on top

of our apartment (well it felt like it! : ) several times a couple

months ago. Yikes. I just said, " Lord, forgive my sins, I'm coming

home!!!! "

A bazillion angel hugs right back at you, Debs.

Love & Hope...

Tess

[Guest guest]

Hi Tess,

Hope that you have rested a bit today and feel a tiny bit better. I know

that I slept most of the day, I was up since 3:30 AM with chest pains that

went into my jaw, so that was kinda scary. had to pick up some

jewelry repairs at the store today and so naturally I went with her with my

things that needed to be repaired and needed batteries. I also brought some

things that I thought needed a new design so I am kinda eager to see how they

are going to turn out. I didn't have to pay for any new jewelry, just the

new mountings, so hopefully it won't be that much. Kinda gives up a little

pick me up. Jewelry and lingerie, a girls two best friends!!!!!! LOL

How many Remicade treatments are you up to now? I go for my second one on

Friday barring any insurance complications. I have noticed a bit more

energy, but most of my joint pain is still there and with the same intensity.

So I hope that I will be in the group that notices a change after the second

infusion. The pain in that knee is still off the charts and the skelaxin

only relieves some of the back pain occasionally. The ortho doc decreased

the strength of the pain medication and the other doc decreased the strength

of the Xanax, so I don't know what the heck is going on. All I know is that

I am not feeling my best, thank you very much Drs!!!!!!!!!!

Ron talked to his brother tonight and found out that his Mom is not doing

well at all. She is refusing to eat and is kinda fading away. I don't

really get along too well with my in-laws. Grrrrrrrrrrrrrrr. I told Ron

that once I start to feel a little bit better that we would see about going

home (Chicago) for a long weekend so that we could visit with her.

Grrrrrrrrrrrrrr. I hate it when I am nice!!!! LOL. We went to a family

wedding last June in Chicago and all during the reception, she sat with her

back to me after not having seen me for at least 6 years. So apparently, the

feeling is mutual. But she is 85 and all that so, I will go and be the

dutiful daughter in law. After all it is just a weekend!

Ron continues to work on the backyard and I must say it is really starting to

take shape and look really nice. Just need some furniture and the rest of

the fountain installed and oh yes, some lights and then we should be good to

go.

Hope you have a good weekend and it gets more pain free as time goes on.

Gentle, tender, angel hugs,

Debs in FL

PS: Watch out while crossing streets for any Mack Trucks!!!!

[Guest guest]

To s P

[Guest guest]

To s parent,

Hi , my son is Aedan and has recently had his first surgery. He is

almost 4months old and is doing great since the surgery. Is in a school

yet? How is he doing developmentally? I think Aedan is right on target but

he is so young yet. How is the response from other children to s' eyes?

I'm interested to talk with you because we both have sons. I also have a

41/2 year old daughter named Raina. Do you have other children? What

surgeries have you decided to have done for ? Hope to talk with you

soon.

[Guest guest]

Hi, my name is I am from Spain and my daughter who is 3 1/2 years old

has got BLEPH. Her development is fine, she has moderate ptosis and her

vision is fine, so I´ve decided not to undertake surgery yet.

She is in school and she is a happy girl. Does anybody know what is the best

way to explain her why she has got so special, although to me pretty, eyes?

Thank you

>From: rainamint@...

>Reply-blepharophimosis

>blepharophimosis

>Subject: Re: blepharophimosis Update

>Date: Tue, 24 Sep 2002 12:53:26 EDT

>

>To s parent,

>

> Hi , my son is Aedan and has recently had his first surgery. He is

>almost 4months old and is doing great since the surgery. Is in a

>school

>yet? How is he doing developmentally? I think Aedan is right on target

>but

>he is so young yet. How is the response from other children to s'

>eyes?

>I'm interested to talk with you because we both have sons. I also have a

>41/2 year old daughter named Raina. Do you have other children? What

>surgeries have you decided to have done for ? Hope to talk with you

>soon.

>

_________________________________________________________________

Únase al mayor servicio mundial de correo electrónico:

http://www.hotmail.com/es

[Guest guest]

Hi a Thankyou for the reply. I just took Aedan to the opthamalogist

and he suggests patching Aedan's eyes alternating eyes daily. We are off to

the surgeon today for a checkup. Thanks again. Hope to talk with you soon.

[Guest guest]

Congratulations!! I know this is so exciting for you all! I'm so happy this went sucessfully. Enjoy the great outdoors!

Stact

-----Original Message-----From: snellshein [mailto:snellshein@...] Sent: Sunday, July 25, 2004 10:46 PMblepharophimosis Subject: blepharophimosis updateHi, all!'s doing great! We saw his surgeon last Thursday & good news! His eyes were each measuring 19 milimeters horizontally. Now, 6 weeks post canthoplasty & canthoplexy surgery, his eyes measure 23 milimeters wide. He's still swollen & a bit lumpy, as all the deep stitches have not yet dissolved, but every day the incision looks better. He seems to see much better and he's now rarely tilting his head back to see. I can't believe the difference. He's now also able to go outside! Yea!Sari

[Guest guest]

Glad to hear is doing well. I bet you and he are both happy he can go outside. I'm just at the beginning of not being able to go outside. It's so hard to explain to a 6 yr old who is feeling like nothing even happened that he's not allowed to go out during his summer break from school. Garrett just went for his 1 wk post op appointment today. Everything is looking good. He too is still swollen but he sure looks good.

[Guest guest]

I'm so glad for you and ! Thanks so much for sharing your experience and

's

pictures. Its reassuring for us as we face 's future canthoplasty/plexy

down the road.

Debbie

[Guest guest]

Hi Sari.. Awesome to catch up about kyles update... Take Care to you both

blepharophimosis update

Hi, all!'s doing great! We saw his surgeon last Thursday & good news! His eyes were each measuring 19 milimeters horizontally. Now, 6 weeks post canthoplasty & canthoplexy surgery, his eyes measure 23 milimeters wide. He's still swollen & a bit lumpy, as all the deep stitches have not yet dissolved, but every day the incision looks better. He seems to see much better and he's now rarely tilting his head back to see. I can't believe the difference. He's now also able to go outside! Yea!Sari

[Guest guest]

Hi Sari,

Glad to hear is doing so well, Our son Ethan (the younger one in the pix, pumpkin) just had his 18 mth check up today, he is doing really well, his eye sight is all good, the Dr (Weatherhead) is trying to hold off surgeries for as long as he can, for better results he said, he said that he may need a temporary ptosis lift when he is 2ish which is 6 mths away, he said his top eyelids don't have any movement, obviously because of the lack of skin and levator muscle missing, we will see how it goes, he runs into doors and stuff a little, but most toddlers do ha:)

Can I just ask what is the procedure for the *canthoplasty* and the *canthoplexy* what do they involve etc...? There is so many procedures and words to learn??? Our dr today drew 4 different ways to do the ptosis lift! and I am sure there is other as well, each Dr has there own opinion.

Leanne:)

-- Re: blepharophimosis update

Hi Sari.. Awesome to catch up about kyles update... Take Care to you both

blepharophimosis update

Hi, all!'s doing great! We saw his surgeon last Thursday & good news! His eyes were each measuring 19 milimeters horizontally. Now, 6 weeks post canthoplasty & canthoplexy surgery, his eyes measure 23 milimeters wide. He's still swollen & a bit lumpy, as all the deep stitches have not yet dissolved, but every day the incision looks better. He seems to see much better and he's now rarely tilting his head back to see. I can't believe the difference. He's now also able to go outside! Yea!Sari

[Guest guest]

So glad you are doing well, and that you have turned a mind - at

least a tiny bit. From your post I think I read that the NMSS has

sent a letter to the neuro's telling them that LDN does not work and

is a waste? Well at least they are not still saying that it is

harmful!?! If true that would be a tiny improvement in their stand.

Cinders

[Guest guest]

congratulation !

Way to go!

Zora

[Guest guest]

Ni

[Guest guest]

Nicki Mike and Avery, Tears of Joy for you from Aedan's mom in NYC , I remember seeing Aedan's big blue eyes for the first time. xoxoxo

[Guest guest]

Nicki & Mike

hi there, just wanted to say congrats on getting your baby's surgery and thankfull all went well, hope to see pictures real soon.

tonikka (mom to lynden age 8(BPES))

(mom to hunter age 6 and avery age 3 months)

-----Original Message-----From: blepharophimosis [mailto:blepharophimosis ]On Behalf Of Mike and Nicki VenableSent: October 13, 2006 8:57 AMblepharophimosis Subject: blepharophimosis Update

Hello all,Avery had her surgery earlier than we had expected. She had slings put in yesterday at Riley Hospital in Indianapolis, IN. The doctor was GREAT! He stated the procedure was one of his best. He is not sure she will need any additional surgeries...praying she does not. She came out of the surgery very hazy. But by this morning she was awake and cooing as if nothing had happen. She was a strong little girl and last night, Mike and I finally found out what color her eyes are...dark green like her Mike. Tears of joy came over me and Mike. I cannot express to all of you out there how your words and information have helped us through this. I will be posting pictures soon...thank you all.Nicki and Mike VenableFort Wayne, IN

[Guest guest]

Mike and Nicki, Congratulations! I'm happy for you! Good Luck and God Bless you and your family!-Mike and Nicki Venable <venables72@...> wrote: Hello all,Avery had her surgery earlier than we had expected. She had slings put in yesterday at Riley Hospital in Indianapolis, IN. The doctor was GREAT! He stated the procedure was one of his best. He is not sure she will need any additional surgeries...praying she does not. She came out of the surgery very hazy. But by

this morning she was awake and cooing as if nothing had happen. She was a strong little girl and last night, Mike and I finally found out what color her eyes are...dark green like her Mike. Tears of joy came over me and Mike. I cannot express to all of you out there how your words and information have helped us through this. I will be posting pictures soon...thank you all.Nicki and Mike VenableFort Wayne, IN

How low will we go? Check out Messenger’s low PC-to-Phone call rates.

[Guest guest]

Congratulations!! I remember the day I saw my Jordan's beautiful blue

eyes )

Good luck and our prayers are with you.

Beaver

Alabama

[Guest guest]

Terry,

I'm glad for you. Sounds like to me God is doing good things in your life.

(I sure do wish the group was set up for stationery)

love you,

Ms. Muse

" I believe that unarmed truth and unconditional love will have final word in

reality. This is why right, temporarily defeated, is stronger than evil

triumphant. "

Luther King, Jr.