Thanks to everyone

[Guest guest]

When Baxter was born he did not open his eyes at all. When I first

saw him I knew there was something wrong with him but everyone told

me I was being paranoid.

At 4 days the paediatrician did his check so we could go home.

During his exam he could not get Baxters eyes open at all, yet still

discharged us and said don't worry about it. He still had not opened

his eyes. After 2 weeks I went to my local GP who suggested it was

just the birth trauma and bruising that was making him look odd.

I was not satisfied with his explanation so I took him back to

hospital he was born in and they would not see him as he was not a

newborn. Nobody seemd concerned that after so many weeks he was

still not opening his eyes. I was finally referred to another

hospital and had to go thru the public emergency room to see someone.

The doctor there took one look at him and said he just has

conjunctivitis, gave us medication and sent us home. By this time

my husband was finally acknowledging there was something more, we

were noticing his sensitivity to light as well as the lump growing

in the corner of his eye, not to mention the other physical

characteristics mark bpes.

I finally went back to my GP in tears and he gave us a referral to

an eye specialist. We waited 5 weeks for the appointmant not

knowing what to expect. The specialist took one look at him and

said he has bpes and referred us to a surgeon. He also told me how

to squeeze the puss that was building up in his tear ducts. I had

to do this several time a day everyday, with instructions that if he

was not crying I was not doing it hard enough.

So of course we then came home and looked on the internet for

information and scared ourselves wittless with what we found.

Information on everything from physical to mental retardation and a

thousand other possible aspects of the condition.

He is the first in our family to have this and nobody knew anything

about it. I spent weeks blaming myself, thinking it was something I

had done when I was pregnant that caused it.

I looked for support groups but did not find anything for a long

time. I have no idea how I stumbled across this group but I am

almost in tears at how happy I was to find it. After months of

stress, to finally hear other people talking about their own

experiences has been priceless to me.

I have learnt more in the last few days than I have in months. The

responses I have had to my questions, some of which I have felt

stupid or paranoid for asking, have done so much to help me put

everything in perspective. I did not fully realise how much stress

and tension I have been putting on myself. To know there are other

people who know how I feel is like a lifeline.

I cannot thank everyone enough for sharing yourselves and your

stories. It has helped more than you know. I hope I have not bored

you all to death with my sob story, and if I don't stop crying on

the keyboard I'll wreck my computer. But I had to say a huge thank

you.

I'll post some photos of Baxter as soon as I get then ten rolls on

my desk developed.