Re: My 2 year old ACTIVE son

[Guest guest]

my, now 4 year old, had his first surgery when he was 2 1/2 months

old. he had the slings done and it was the most beautiful thing in

the world to see his eyeballs. it was scary but much easier than i

thought. it was an outpatient surgery that lasted a few hours and we

were home in the late afternoon. we kept him gooped up with ointment

for a few weeks and then the tissue began to relax a little and he

learned to work everything and he could open and close his eyes

freely. he actually became a much happier infant and didn't appear

to be in any pain or anything.

mason will be going through 2 more surgeries in the next year. an

epicanthul surgery and then another to re-do the slings. this time

they will use his own tissue and hope it should last longer. i am

nervous this time, mainly because he will be scared. the first time

he was a newborn, my first baby and i was totally freaked out but he

was clueless. this time i know it won't be so bad. i know he will

come out ok, but he is definitely going to be scared.

i hope these few things are helpful. since i became a member of this

group i have found comfort in knowing there are other parents going

through similar situations and i especially enjoy reading the adults

who have grown up with this. they all sound so strong.

good luck!

becki

> I have read every message written in this group tonight and I have

> laughed cried and just been relieved to know that I'm not crazy (or

> at least as crazy as I thought)for feeling afraid, angery and

> shameful all at once! My son Devon is 17 months and he was

> diagnoised two weeks after birth (the longest two weeks in my

life).

> I live in North Carolina and we go to Baptist Hospital where a Dr.

> Yeatts plans to start the surgery process (add fisia (sp?) to bring

> up the lid) when Devon is 20 months old. Devon has developed

normally

> with a few bumps along the way (awful case of reflux and a temper

the

> size of Florida!) and normal vision. He likes to be carried high in

> our arms which makes my family upset because they tire of holding

him

> this way. I try to explain that he sees better but they don't get

> it. I am hypersensitive about the stares and 'sleepy-eye'

> comments... I guess I understand, but it hurts.

>

> Has anyone started the surgery so young? How to you comfort a

child

> healing from this process? I have an older daughter who doesn't

have

> BPES. Any suggestions on how to get her prepared? Or to get me

> prepared? Thanks... I think I just needed to share with someone.

> Family and friends say 'oh he is cute as he is!' (I agree but worry

> about the future!).

[Guest guest]

I was looking forward tday to coming home and finding a message with

some words of wisdom. I am so nervous about the surgery because

Devon is now able to anticipate and vocalize discomfort and pain.

This will be a task. Thank you for your kind words and sharing with

me. It has made a difference in my day and in my outlook.

I am making a list of questions to ask the doctor and it seems that

tear ducts and recovery are two issues. Did you encounter any others?

Thanks again!