Re: Prize winning cuteness!

[Guest guest]

Hi ,

Thanks for posting Naomi's prize winning photo. Congratulations.

Why can't you believe it? - she is gorgeous! It's great that she

looks so confident too, so well done to you for your positive

attitudes that have clearly rubbed off on her!

Leah

> > >

> > > Hi everyone,

> > >

> > > We've been on this board since our son was born (in

> > march '03) but never really

> > > posted too much. However, tonight I just wanted t to let

everyone

> > know how much I

> > > appreciate all the experiences shared on this board. It has

been

> > and continues to be a

> > > huge source of information AND encouragement to us.

> > >

> > > Whenever I feel worried or sad about something related to his

> > bleph I come here and read

> > > and find myself validated, hopeful, armed with new skills

(like

> > comments in public) and

> > > information, and praying for all the other bleph parents and

kids.

> > >

> > > Please bear with me as I share a part of 's experience

with

> > bleph.

> > >

> > > has already had 4 surgeries at 3 years of age (1st

frontalis

> > slings at 3mos, 2nd redo

> > > slings at 9mos, 3rd and 4th to remove infection from slings)

and

> > is slated for a 5th this fall

> > > to insert new silicone slings (his previous slings were

Ptosept).

> > His slings are rendered

> > > pretty much useless now because the infections ate through the

> > material. Being an active

> > > boy, and sometimes a bit clumsy, he would often fall and knock

his

> > head on hard surfaces,

> > > then his sling tracks would develop infections under the

skin's

> > surface, then granulomas

> > > would form and deterioate the skin. It had gotten so bad the

> > surgeon almost had to graft

> > > skin to repair the hole the infection had caused in his right

> > eyelid.

> > >

> > > I feel sad sometimes that it takes going through the process

for

> > us to realize some things

> > > may have been unnecessary for him to suffer (like realizing

later

> > the Ptosept was new

> > > material on the market with no history like the silicone).

> > However, we're grateful that we

> > > had a very concerned and careful doctor that got 's eyes

open

> > early for his brain

> > > development. Although highly intelligent, he has a motor

> > sequencing disorder that also

> > > affects his speech, and although the connection to lack of

visual

> > stimulation can't be

> > > proven, I wonder what else would have developed if we had

waited

> > too long. We have since

> > > moved and the last 2 " clean-up " surgeries have been done by

our

> > world-renowned, more

> > > conserative pediatric opthalmologist at Duke Eye Clinic (NC,

USA)

> > (I haven't asked him yet

> > > how many other BPES patients he has seen though).

> > >

> > > Given 's complications with the sling material, I'm very

> > interested in seeing if taping

> > > his eyes would be a better alternative. Thank you so much,

> > , for posting your

> > > experience and information. I'm going to look into getting

> > Dermablend and talk to our

> > > opthamologist about it. Incidentally, as a newborn I would put

> > in his bouncy seat

> > > and manually hold 's eyelids open for an hour a day in

front

> > of the mirror. Although

> > > he wasn't diagnosed for 3 months, (the opthalmologist kept

saying

> > some babies take more

> > > time before they open their eyes, or, since I'm ethnically

> > Chinese, they would ask if anyone

> > > in my family had small eyes) I knew something wasn't quite

right.

> > When I opened his lids

> > > for him, he'd smile and get really excited and I knew he was

> > absorbing the world. When I

> > > had to let them down I felt sad and his activity level would

also

> > drop off. I thought about

> > > using tape at the time but was too concerned about being

laughed

> > at (and too). Now

> > > that I know what I know, I could care less!

> > >

> > > Thanks for all the posts and for those with those beautiful,

new

> > babies just starting down

> > > the BPES road, I encourage you to follow your instincts about

what

> > your precious ones

> > > need. Arm your doctors with information from your research and

if

> > need be, get 2nd and

> > > 3rd opinions. I wish I had in the beginning!

> > >

> > > Debbie Barfoot

> > >

> >

>

[Guest guest]

You have said exactly what I was thinking!! You must be so proud of Naomi looking so gorgeous and happy! Love Lucy xx (Gosport UK) leara27 <leara27@...> wrote: Hi ,Thanks for posting Naomi's prize winning photo. Congratulations. Why can't you believe it? - she is gorgeous! It's great that she looks so confident too, so well done to you for your positive attitudes that have clearly rubbed off on her!Leah> > >> > > Hi everyone,> > > > > > We've been on this board since our son was born (in > > march '03) but never really > > > posted too much. However, tonight I just wanted t to let everyone > > know how much I > > > appreciate all the experiences shared on this board. It has been > > and continues to be a > > > huge source of information AND encouragement to

us.> > > > > > Whenever I feel worried or sad about something related to his > > bleph I come here and read > > > and find myself validated, hopeful, armed with new skills (like > > comments in public) and > > > information, and praying for all the other bleph parents and kids.> > > > > > Please bear with me as I share a part of 's experience with > > bleph.> > > > > > has already had 4 surgeries at 3 years of age (1st frontalis > > slings at 3mos, 2nd redo > > > slings at 9mos, 3rd and 4th to remove infection from slings) and > > is slated for a 5th this fall > > > to insert new silicone slings (his previous slings were Ptosept). > > His slings are rendered > > > pretty much useless now because the infections ate through the > >

material. Being an active > > > boy, and sometimes a bit clumsy, he would often fall and knock his > > head on hard surfaces, > > > then his sling tracks would develop infections under the skin's > > surface, then granulomas > > > would form and deterioate the skin. It had gotten so bad the > > surgeon almost had to graft > > > skin to repair the hole the infection had caused in his right > > eyelid. > > > > > > I feel sad sometimes that it takes going through the process for > > us to realize some things > > > may have been unnecessary for him to suffer (like realizing later > > the Ptosept was new > > > material on the market with no history like the silicone). > > However, we're grateful that we > > > had a very concerned and careful doctor that got 's eyes open

> > early for his brain > > > development. Although highly intelligent, he has a motor > > sequencing disorder that also > > > affects his speech, and although the connection to lack of visual > > stimulation can't be > > > proven, I wonder what else would have developed if we had waited > > too long. We have since > > > moved and the last 2 "clean-up" surgeries have been done by our > > world-renowned, more > > > conserative pediatric opthalmologist at Duke Eye Clinic (NC, USA) > > (I haven't asked him yet > > > how many other BPES patients he has seen though).> > > > > > Given 's complications with the sling material, I'm very > > interested in seeing if taping > > > his eyes would be a better alternative. Thank you so much, > > , for posting your

> > > experience and information. I'm going to look into getting > > Dermablend and talk to our > > > opthamologist about it. Incidentally, as a newborn I would put > > in his bouncy seat > > > and manually hold 's eyelids open for an hour a day in front > > of the mirror. Although > > > he wasn't diagnosed for 3 months, (the opthalmologist kept saying > > some babies take more > > > time before they open their eyes, or, since I'm ethnically > > Chinese, they would ask if anyone > > > in my family had small eyes) I knew something wasn't quite right. > > When I opened his lids > > > for him, he'd smile and get really excited and I knew he was > > absorbing the world. When I > > > had to let them down I felt sad and his activity level would also > > drop off. I

thought about > > > using tape at the time but was too concerned about being laughed > > at (and too). Now > > > that I know what I know, I could care less! > > > > > > Thanks for all the posts and for those with those beautiful, new > > babies just starting down > > > the BPES road, I encourage you to follow your instincts about what > > your precious ones > > > need. Arm your doctors with information from your research and if > > need be, get 2nd and > > > 3rd opinions. I wish I had in the beginning!> > > > > > Debbie Barfoot> > >> >>

The all-new goes wherever you go - free your email address from your Internet provider.

[Guest guest]

> > > >

> > > > Hi everyone,

> > > >

> > > > We've been on this board since our son was born (in

> > > march '03) but never really

> > > > posted too much. However, tonight I just wanted t to let

> everyone

> > > know how much I

> > > > appreciate all the experiences shared on this board. It has

> been

> > > and continues to be a

> > > > huge source of information AND encouragement to us.

> > > >

> > > > Whenever I feel worried or sad about something related to his

> > > bleph I come here and read

> > > > and find myself validated, hopeful, armed with new skills

> (like

> > > comments in public) and

> > > > information, and praying for all the other bleph parents and

> kids.

> > > >

> > > > Please bear with me as I share a part of 's experience

> with

> > > bleph.

> > > >

> > > > has already had 4 surgeries at 3 years of age (1st

> frontalis

> > > slings at 3mos, 2nd redo

> > > > slings at 9mos, 3rd and 4th to remove infection from slings)

> and

> > > is slated for a 5th this fall

> > > > to insert new silicone slings (his previous slings were

> Ptosept).

> > > His slings are rendered

> > > > pretty much useless now because the infections ate through the

> > > material. Being an active

> > > > boy, and sometimes a bit clumsy, he would often fall and knock

> his

> > > head on hard surfaces,

> > > > then his sling tracks would develop infections under the

> skin's

> > > surface, then granulomas

> > > > would form and deterioate the skin. It had gotten so bad the

> > > surgeon almost had to graft

> > > > skin to repair the hole the infection had caused in his right

> > > eyelid.

> > > >

> > > > I feel sad sometimes that it takes going through the process

> for

> > > us to realize some things

> > > > may have been unnecessary for him to suffer (like realizing

> later

> > > the Ptosept was new

> > > > material on the market with no history like the silicone).

> > > However, we're grateful that we

> > > > had a very concerned and careful doctor that got 's eyes

> open

> > > early for his brain

> > > > development. Although highly intelligent, he has a motor

> > > sequencing disorder that also

> > > > affects his speech, and although the connection to lack of

> visual

> > > stimulation can't be

> > > > proven, I wonder what else would have developed if we had

> waited

> > > too long. We have since

> > > > moved and the last 2 " clean-up " surgeries have been done by

> our

> > > world-renowned, more

> > > > conserative pediatric opthalmologist at Duke Eye Clinic (NC,

> USA)

> > > (I haven't asked him yet

> > > > how many other BPES patients he has seen though).

> > > >

> > > > Given 's complications with the sling material, I'm very

> > > interested in seeing if taping

> > > > his eyes would be a better alternative. Thank you so much,

> > > , for posting your

> > > > experience and information. I'm going to look into getting

> > > Dermablend and talk to our

> > > > opthamologist about it. Incidentally, as a newborn I would put

> > > in his bouncy seat

> > > > and manually hold 's eyelids open for an hour a day in

> front

> > > of the mirror. Although

> > > > he wasn't diagnosed for 3 months, (the opthalmologist kept

> saying

> > > some babies take more

> > > > time before they open their eyes, or, since I'm ethnically

> > > Chinese, they would ask if anyone

> > > > in my family had small eyes) I knew something wasn't quite

> right.

> > > When I opened his lids

> > > > for him, he'd smile and get really excited and I knew he was

> > > absorbing the world. When I

> > > > had to let them down I felt sad and his activity level would

> also

> > > drop off. I thought about

> > > > using tape at the time but was too concerned about being

> laughed

> > > at (and too). Now

> > > > that I know what I know, I could care less!

> > > >

> > > > Thanks for all the posts and for those with those beautiful,

> new

> > > babies just starting down

> > > > the BPES road, I encourage you to follow your instincts about

> what

> > > your precious ones

> > > > need. Arm your doctors with information from your research and

> if

> > > need be, get 2nd and

> > > > 3rd opinions. I wish I had in the beginning!

> > > >

> > > > Debbie Barfoot

> > > >

> > >

> >

>

[Guest guest]

Yikes, I can't believe my message got lost --

and Leah, I typed another long email in response to both of you...but I

don't know

where it went --

The gist of it before I have to put my 4 month old to bed is - I was so touched

by your

emails and the encouragement it gave me. , thank you for posting Naomi's

pics,

and for persmission to print them - we may do that just to show the

opthalmologist -

loved looking at Naomi's pics and afterwards said " More! More pictures!! "

After we check w/the opthal. I may email you for tips on applying the tape if it

seems good

for . already said he's willing to try it!!

Leah, for 's first 2.5 years we worried about " is this normal

development? " , I think

more so than normal first-time parents do. Email me if you want to talk more on

this. The

bottom line for us in looking back is most of his motor development would have

resolved

themselves on their own, and in his own time, but it didn't hurt to get outside

testing and

services (esp. since state-sponsored testing and services were free for us until

age 3).

Maybe calling around just to talk to some developmental speicialists/therapists

would help

too - we found most of them offered a sympathetic ear and objectivity even when

they

didn't have anymore space on their caseload for him, and we learned a lot of

tips and

information just from these conversations.

I think his motor sequencing (dyspraxia/apraxia) is totally unrelated to his

BPES, but when

coupled with eyesight issues (he may be nearsighted as well as has nystagmus) it

definitely affects everything. With his comprehension was also at a

4y.o.'s when he

was 2.5, although his expressive speech was 1yr 10 mo., so they were concerned

about

his self-esteem. He is extra sensitive and very self-aware, and a bit of a

perfectionist. So it

helped just to have the extra support and very encouraging therapists who always

saw the

potential in david and praised our efforts with him, and empowered us to be his

best

advocates.

Which I'm not being right now 'cause he needs me to get him to bed and is

getting mad at

me...

Email me if you want to talk more - deb_barfoot@... --

Take care!!

Debbie

> > > > >

> > > > > Hi everyone,

> > > > >

> > > > > We've been on this board since our son was born (in

> > > > march '03) but never really

> > > > > posted too much. However, tonight I just wanted t to let

> > everyone

> > > > know how much I

> > > > > appreciate all the experiences shared on this board. It has

> > been

> > > > and continues to be a

> > > > > huge source of information AND encouragement to us.

> > > > >

> > > > > Whenever I feel worried or sad about something related to his

> > > > bleph I come here and read

> > > > > and find myself validated, hopeful, armed with new skills

> > (like

> > > > comments in public) and

> > > > > information, and praying for all the other bleph parents and

> > kids.

> > > > >

> > > > > Please bear with me as I share a part of 's experience

> > with

> > > > bleph.

> > > > >

> > > > > has already had 4 surgeries at 3 years of age (1st

> > frontalis

> > > > slings at 3mos, 2nd redo

> > > > > slings at 9mos, 3rd and 4th to remove infection from slings)

> > and

> > > > is slated for a 5th this fall

> > > > > to insert new silicone slings (his previous slings were

> > Ptosept).

> > > > His slings are rendered

> > > > > pretty much useless now because the infections ate through the

> > > > material. Being an active

> > > > > boy, and sometimes a bit clumsy, he would often fall and knock

> > his

> > > > head on hard surfaces,

> > > > > then his sling tracks would develop infections under the

> > skin's

> > > > surface, then granulomas

> > > > > would form and deterioate the skin. It had gotten so bad the

> > > > surgeon almost had to graft

> > > > > skin to repair the hole the infection had caused in his right

> > > > eyelid.

> > > > >

> > > > > I feel sad sometimes that it takes going through the process

> > for

> > > > us to realize some things

> > > > > may have been unnecessary for him to suffer (like realizing

> > later

> > > > the Ptosept was new

> > > > > material on the market with no history like the silicone).

> > > > However, we're grateful that we

> > > > > had a very concerned and careful doctor that got 's eyes

> > open

> > > > early for his brain

> > > > > development. Although highly intelligent, he has a motor

> > > > sequencing disorder that also

> > > > > affects his speech, and although the connection to lack of

> > visual

> > > > stimulation can't be

> > > > > proven, I wonder what else would have developed if we had

> > waited

> > > > too long. We have since

> > > > > moved and the last 2 " clean-up " surgeries have been done by

> > our

> > > > world-renowned, more

> > > > > conserative pediatric opthalmologist at Duke Eye Clinic (NC,

> > USA)

> > > > (I haven't asked him yet

> > > > > how many other BPES patients he has seen though).

> > > > >

> > > > > Given 's complications with the sling material, I'm very

> > > > interested in seeing if taping

> > > > > his eyes would be a better alternative. Thank you so much,

> > > > , for posting your

> > > > > experience and information. I'm going to look into getting

> > > > Dermablend and talk to our

> > > > > opthamologist about it. Incidentally, as a newborn I would put

> > > > in his bouncy seat

> > > > > and manually hold 's eyelids open for an hour a day in

> > front

> > > > of the mirror. Although

> > > > > he wasn't diagnosed for 3 months, (the opthalmologist kept

> > saying

> > > > some babies take more

> > > > > time before they open their eyes, or, since I'm ethnically

> > > > Chinese, they would ask if anyone

> > > > > in my family had small eyes) I knew something wasn't quite

> > right.

> > > > When I opened his lids

> > > > > for him, he'd smile and get really excited and I knew he was

> > > > absorbing the world. When I

> > > > > had to let them down I felt sad and his activity level would

> > also

> > > > drop off. I thought about

> > > > > using tape at the time but was too concerned about being

> > laughed

> > > > at (and too). Now

> > > > > that I know what I know, I could care less!

> > > > >

> > > > > Thanks for all the posts and for those with those beautiful,

> > new

> > > > babies just starting down

> > > > > the BPES road, I encourage you to follow your instincts about

> > what

> > > > your precious ones

> > > > > need. Arm your doctors with information from your research and

> > if

> > > > need be, get 2nd and

> > > > > 3rd opinions. I wish I had in the beginning!

> > > > >

> > > > > Debbie Barfoot

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Hi Debbie and Leah,

THANK YOU for being so supportive : )

Yeah, Naomi loves to see the photos too. She loves the babies the best, so

clucky huh??

Anyway, do email me if you need tips on how to tape. Must say that with 3 years

of

practise the length of the tape we use on her has shrunk from 3 inches to 1/2 an

inch

now.

Take care now,

> > > > > >

> > > > > > Hi everyone,

> > > > > >

> > > > > > We've been on this board since our son was born (in

> > > > > march '03) but never really

> > > > > > posted too much. However, tonight I just wanted t to let

> > > everyone

> > > > > know how much I

> > > > > > appreciate all the experiences shared on this board. It has

> > > been

> > > > > and continues to be a

> > > > > > huge source of information AND encouragement to us.

> > > > > >

> > > > > > Whenever I feel worried or sad about something related to his

> > > > > bleph I come here and read

> > > > > > and find myself validated, hopeful, armed with new skills

> > > (like

> > > > > comments in public) and

> > > > > > information, and praying for all the other bleph parents and

> > > kids.

> > > > > >

> > > > > > Please bear with me as I share a part of 's experience

> > > with

> > > > > bleph.

> > > > > >

> > > > > > has already had 4 surgeries at 3 years of age (1st

> > > frontalis

> > > > > slings at 3mos, 2nd redo

> > > > > > slings at 9mos, 3rd and 4th to remove infection from slings)

> > > and

> > > > > is slated for a 5th this fall

> > > > > > to insert new silicone slings (his previous slings were

> > > Ptosept).

> > > > > His slings are rendered

> > > > > > pretty much useless now because the infections ate through the

> > > > > material. Being an active

> > > > > > boy, and sometimes a bit clumsy, he would often fall and knock

> > > his

> > > > > head on hard surfaces,

> > > > > > then his sling tracks would develop infections under the

> > > skin's

> > > > > surface, then granulomas

> > > > > > would form and deterioate the skin. It had gotten so bad the

> > > > > surgeon almost had to graft

> > > > > > skin to repair the hole the infection had caused in his right

> > > > > eyelid.

> > > > > >

> > > > > > I feel sad sometimes that it takes going through the process

> > > for

> > > > > us to realize some things

> > > > > > may have been unnecessary for him to suffer (like realizing

> > > later

> > > > > the Ptosept was new

> > > > > > material on the market with no history like the silicone).

> > > > > However, we're grateful that we

> > > > > > had a very concerned and careful doctor that got 's eyes

> > > open

> > > > > early for his brain

> > > > > > development. Although highly intelligent, he has a motor

> > > > > sequencing disorder that also

> > > > > > affects his speech, and although the connection to lack of

> > > visual

> > > > > stimulation can't be

> > > > > > proven, I wonder what else would have developed if we had

> > > waited

> > > > > too long. We have since

> > > > > > moved and the last 2 " clean-up " surgeries have been done by

> > > our

> > > > > world-renowned, more

> > > > > > conserative pediatric opthalmologist at Duke Eye Clinic (NC,

> > > USA)

> > > > > (I haven't asked him yet

> > > > > > how many other BPES patients he has seen though).

> > > > > >

> > > > > > Given 's complications with the sling material, I'm very

> > > > > interested in seeing if taping

> > > > > > his eyes would be a better alternative. Thank you so much,

> > > > > , for posting your

> > > > > > experience and information. I'm going to look into getting

> > > > > Dermablend and talk to our

> > > > > > opthamologist about it. Incidentally, as a newborn I would put

> > > > > in his bouncy seat

> > > > > > and manually hold 's eyelids open for an hour a day in

> > > front

> > > > > of the mirror. Although

> > > > > > he wasn't diagnosed for 3 months, (the opthalmologist kept

> > > saying

> > > > > some babies take more

> > > > > > time before they open their eyes, or, since I'm ethnically

> > > > > Chinese, they would ask if anyone

> > > > > > in my family had small eyes) I knew something wasn't quite

> > > right.

> > > > > When I opened his lids

> > > > > > for him, he'd smile and get really excited and I knew he was

> > > > > absorbing the world. When I

> > > > > > had to let them down I felt sad and his activity level would

> > > also

> > > > > drop off. I thought about

> > > > > > using tape at the time but was too concerned about being

> > > laughed

> > > > > at (and too). Now

> > > > > > that I know what I know, I could care less!

> > > > > >

> > > > > > Thanks for all the posts and for those with those beautiful,

> > > new

> > > > > babies just starting down

> > > > > > the BPES road, I encourage you to follow your instincts about

> > > what

> > > > > your precious ones

> > > > > > need. Arm your doctors with information from your research and

> > > if

> > > > > need be, get 2nd and

> > > > > > 3rd opinions. I wish I had in the beginning!

> > > > > >

> > > > > > Debbie Barfoot

> > > > > >

> > > > >

> > > >

> > >

> >

>