Finally introducing ourselves

[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