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Re: Pre-op appt.

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We will certainly be thinking about you and Garrett on Friday. Best of luck and I know all we go well!

(mom of , 11 months)

-----Original Message-----From: Feichtner [mailto:mfeichtner@...] Sent: Monday, March 22, 2004 1:16 PMblepharophimosis Subject: blepharophimosis Pre-op appt.

I took Garrett for his pre-op appt. with his surgeon today. His surgery is on Friday. The surgeon was orginally going to take the fascia from his leg, but has decided to use the gortex instead. He said that since Garrett has very little skin and everything is so tight that he's probably going to need another surgery. He said that once you take the fascia you can't take it again. Not sure why he can't use the other leg, but i guess i'd rather him only have to do that procedure once. I also told him about finding this group. I was surprised. I was telling him that there were alot of people from other countries on the list. He told me that he has done the most BPES sugeries in the world. Not sure if that was his ego talking or not, but he was sure of himself. Well, i'll let ya's know how surgery goes on Friday. Surgery time is 1pm. I'm going to be going crazy all day with him not allowed eating anything.

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Debbie,

Garrett is having the bilateral frontal slings done. This is his 2nd sling surgery. The first was when he was 4 months old. He is 5 now, will be 6 in July. He had the epicanthus surgery done in August. His surgeon is Dr. Kulwin in Cincinnati, Ohio. He also uses the 5 flap technique. My oldest son who also has BPES had the same technique done when he was in 1st grade. He's in 5th grade now. I was hoping for the same results with Garrett's surgery as we had with Austin's, but Garrett's eyes are alot worse than Austin's were. Austin looks like he never had anything wrong with his eyes. Dr. Kulwin made the creases in the eyelids and they look amazing. Austin only needed 2 surgeries, but Garrett will have to have at least on more. He had such a hard time in August with the epicanthus surgery. He just wouldn't stop throwing up. And of course he has to tell everyone that at his last surgery he threw up on mommy 3 times. I'm sure everything will be fine, i'm just dreading a 1pm surgery time. He's going to be starving and it's going to be hard to explain to him why he's not allowed to eat. He's too young to understand that.

Thanks,

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Dear ,

Good luck on Friday...everything will be fine. Kids are amazing...it is usually the grownups who freak out!

I am curious...what procedure is Garrett having....who is the surgeon...and how old is your son?

Our daughter had surgery at 9 weeks old to have frontal slings put in to help with the ptosis...the doctor used harvested fascia...she was a trooper...however I was a wreck!

Our daughter is almost 4 now and her slings are holding up and hopefully will not have surgery again until she is 10-12...we have decided to wait to allow her some say...understanding...and to also minimize scarring. So far, we want Dr. in Salt Lake City, Utah, USA to do the surgery...he has published a paper on the procedure he uses and according to the publication (and him personally) he has had wonderful results. The procedure is called the 5-flap technique and is found in Arch Ophthalmol-Vol 107, March 1989. This procedure will correct the epicanthus associated with BPES and lengthen the palpebral fissures.

I am sorry...I have babbled long enough.

Your son will do great on Friday!

Debbie

Feichtner <mfeichtner@...> wrote:

I took Garrett for his pre-op appt. with his surgeon today. His surgery is on Friday. The surgeon was orginally going to take the fascia from his leg, but has decided to use the gortex instead. He said that since Garrett has very little skin and everything is so tight that he's probably going to need another surgery. He said that once you take the fascia you can't take it again. Not sure why he can't use the other leg, but i guess i'd rather him only have to do that procedure once. I also told him about finding this group. I was surprised. I was telling him that there were alot of people from other countries on the list. He told me that he has done the most BPES sugeries in the world. Not sure if that was his ego talking or not, but he was sure of himself. Well, i'll let ya's know how surgery goes on Friday. Surgery time is 1pm. I'm going to be going crazy all day with him not allowed

eating anything.

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,

Garrett's surgeon is Dr. Dwight R. Kulwin.

Cincinnati Eye Institue

3219 Clifton Ave. Suite 110

Cincinnati, Ohio 45220

phone: 513-618-3300

fax: 513-618-3305

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,

I was so sorry to hear about the surgery being cancelled. I know that is so hard to have to wait again when you were ready for this one.

When you get a chance, could you put the name, address, and phone number of Garrett's Doctor? We are in Georgia but I am looking for any Dr. that really knows what he is doing and has experience doing it. I have a lot of family in West Virginia, Ohio, and Pittsburgh area so Cinncinati doesn't seem too far. Good luck with the rescheduling!!

Thanks,

-----Original Message-----From: Feichtner [mailto:mfeichtner@...] Sent: Monday, March 22, 2004 1:16 PMblepharophimosis Subject: blepharophimosis Pre-op appt.

I took Garrett for his pre-op appt. with his surgeon today. His surgery is on Friday. The surgeon was orginally going to take the fascia from his leg, but has decided to use the gortex instead. He said that since Garrett has very little skin and everything is so tight that he's probably going to need another surgery. He said that once you take the fascia you can't take it again. Not sure why he can't use the other leg, but i guess i'd rather him only have to do that procedure once. I also told him about finding this group. I was surprised. I was telling him that there were alot of people from other countries on the list. He told me that he has done the most BPES sugeries in the world. Not sure if that was his ego talking or not, but he was sure of himself. Well, i'll let ya's know how surgery goes on Friday. Surgery time is 1pm. I'm going to be going crazy all day with him not allowed eating anything.

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Thanks!!

is only 11 months but I am trying to get everything in order! We will call there.

-----Original Message-----From: Feichtner [mailto:mfeichtner@...] Sent: Thursday, March 25, 2004 10:04 AMblepharophimosis Subject: Re: blepharophimosis Pre-op appt.

,

Garrett's surgeon is Dr. Dwight R. Kulwin.

Cincinnati Eye Institue

3219 Clifton Ave. Suite 110

Cincinnati, Ohio 45220

phone: 513-618-3300

fax: 513-618-3305

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