Re: Finally introducing ourselves

[Guest guest]

Hi Debbie,

It encourages me more that you find what little I have to share useful and

meaningful so,

thank you : )

I do get scared sharing because I'm not sure how it would be interpreted and

also being

the typical reticent Asian... ha!ha!

Anyway, the tape is called BLENDERM and 3M makes it. We used micropore before

(cheaper) but it is very conspicious. As is older now, he may resist the

tape but I

guess if he feels that it helps him see better he may agree to it? Do check with

your doctor

first as well because has had previous procedures and I'm not sure whether

it would

have adverse effects? Likely none but... never know. You are most welcome to

print

Naomi's photos for your doctor to have a look if you like.

Tears came when I read how you held 's eyelids up for an hour and how he

would be

so happy. You are a wonderful mom. Please don't feel regret that you did too

little, or

anything wrong. I don't think I know of anyone who would spend one hour,

everyday,

manually holdling up her baby's eyelids just so to help him see.

When Naomi was a baby, I also asked so many times whether or not there is

something

wrong and got the same answer... " she has small Chinese eyes " justified by " just

like her

dad " . I was very frustrated because like all moms, " that intution " I had told me

something

is NOT RIGHT. My eyes flooded as I was fumbling with the tapes but when our

eyes met

for the first time, I felt an instant clarity and she flashed this huge happy

smile. The tears

became joyous and I was prepared to face the world with micropore!

So yes... if you do want to try the tapes as a temporary measure (for us it is

buying time),

do it and have that attitude you have now - " can't care less " . Every time

someone stares at

us I think " it's fine, Naomi needs to see. I don't know these idiots but I know

that my child

is benefiting for the tapes. So go fly a kite, take a hike, whatever " . I ignore

them. Naomi

needs to see, if it bothers other people it's their problem. I have even been

chastised by a

group of nosey women that I was torturing my kid by not letting her sleep...

sigh...

But one peice of advice I got from a friend from this group that I hold dear is

" don't seek

out the stares " . If I get approached, I tell them nicely for NAOMI'S benefit -

to affirm,

validate and build up her self confidence. All the while smiling and talking as

if I'm talking

about her runny nose or something innocous like that. She sometimes says it

herself, " I

have berfro-mimosis'.

Once again, thank you for introducing yourself and . I'm very happy you

did. If you

do try taping and need some tips, just drop me an email. Take care and I wish

you and

all the very best.

>

> 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,

Nice to meet you. I hope you don't get two versions of this message

because I replied yesterday then my access crashed just after I

pressed " continue " so as my post hasn't appeared today I assume it

was lost. I also find this board so helpful and reassuring although

unlike you I've only used it for about the last month or so. I'm

really glad you've decided to post now. Do you have any pictures

posted? I'd love to see them. It sounds like has really been

through it with his previous surgeries so I hope things are better

now.

Thank you for your words of encouragement in your final paragraph.

I wonder if I can ask you a few things about ?. I'm hoping you

may be able to help me answer a few things that have worried me

because most kids with BPES don't seem to have any motor or

development issues. Sorry, this may be a bit long and i hope you

can bear with me.

How does 's motor sequencing disorder affect him? My baby

Abbie (1 in a week) is also very responsive and can stand but seems

to have some more specific delays, especially things related to

vision but also sitting (she overbalances when she looks up to

see). Abbie seems to like bright colours and moving objects (but

doesn't notice stationary objects or things in the peripheral

vision) so I encourage her learning using this as well as textures

but she seems to have no interest in grabbing toys or putting food

to her mouth (her co-ordination seems ok as she will rub her eyes).

It sounds like 's difficulties are not the same but if you or

anyone can share suggestions how I can help her more, possibly

things that you have found helpful with , I'd love to know.

I'm also quite interested if you know whether it is a part of his

BPES (as I know different genetic changes can cause different

symptoms) or is it an unrelated problem? Also, I know you said the

link to visual deprivation isn't proved but I wondered if 's

specialists had said anything about it. Last time I saw him,

Abbie's paediatrician just said give her some more time as she was

also prem but I feel like if I wait too long it will be too late.

I am quite worried as it was mentioned on here that any visual

defect from deprivation is fixed by 1 year old and I'm sure Abbie's

vision is affected but she hasn't had any surgeries yet. I've seen

what said about the tapes (thanks ). That has

never been mentioned to me by Abbie's surgeon but i'm going to ask

him at the next appointment. I'm also getting referred for a 2nd

opinion but I'm really anxious as the wait is 6 months for a first

appointment and I already feel like I've missed the boat.

I'm really grateful for any advice you can give me.

Best wishes to you and .

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]

Hi Leah and Debbie,

Ern posted Naomi's prize winning (we still can't believe it) photo up today. If

you look

closely you can see the blenderm holding her lids up. That's how the tapes

should work.

Hope that helps you in your consideration for Abbie and .

> >

> > 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

> >

>