----- Original Message -----
From: "tammygloyd" <tammygloyd@...>
To: <hydrocephalus@yahoogroups.com>
Sent: Saturday, September 23, 2006 12:15 PM
Subject: [hydrocephalus] New Here..A little about my daughter...


> Hello,
> My name is Tammy and I am the mother of a four month old baby girl
> named Katherine.

Oh hey there Tammy. Great to hear from you. My daughter just turned 6
yesterday.
Currently has a big thing for "My Little Pony" so the got lots of that
stuff. IMHO better than the over-hyped Disney conglomerate and that
god-awful Dopey Dora (the explorer). Luckily despite my having
hydrocephalus, it had no effect on her and she's healthy but farsighted -
got her eyeglasses when she was 10 months old.

> Katherine was diagnosed with Hydroephalus when I was
> 34 weeks pregnant with her - it was found during a routine ob exam.
> Although it was devastating to find out, I feel extremely fortunate to
> have found out so early.

Ah yes. I guess it depends on the person whether such a thing is
"devastating" or not. When my wife was pregnant she was so concerned that
something might be wrong with the baby, to which I calmly answered - we will
deal with it. I added that the worst that would probably happen is that
she'd need glasses, which is exactly what happened. A no-brainer really, as
almost every relative of mine and most on my wife's side wear glasses. Our
child would be the oddball if it didn't need them.

> Kate was shunted at two days old and has been
> doing wonderful - so far, she shows no developmental delays.

Here's hoping. But you'll find we come in all kinds. The brainy
intellectuals who you'd figure had nothing wrong with them, those who pass
as "normal", those of us who do face challenges but because they're not
apparent ("hidden" disability) we're labelled as stupid, lazy, not trying,
etc. and those so severe they will always need somebody looking after them.
Each of them worthy of life regardless, and it's very disappointing when I
meet someone who disagrees with me eg. "they don't match up to MY personal
model of normalcy therefore they don't deserve to live." This is not a
direct quote but sums up what I hear from time to time.

> Her skull bones are overlapping > and it's possible she may need a cranial
expansion surgery someday -
> has anyone here had that surgery? I don't like to think about what it
> may entail and I pray she won't need the surgery, but, as everyone
> here knows...with Hydrocephalus you can make absolutely no predictions
about the future.

Unfortunately. But if you have a highly qualified neurosurgeon, then you
have little to worry about. And I don't say that blindly.

> There are no answers and no cure - that is the hardest part as her mom. I
just want to take it all away.

Helping her cope and being encouraging go a long way.

> Thanks for listening. I do not know anyone else with Hydrocephalus so I am
> looking for any advice and information that is available, especially
> from people living with the condition. I know this is Katherine's
> battle and I want to support her the best I can.

Great, Tammy! Because of course, infants can't fight such battles alone.
Do you live in California? You didn't say, so I was trying to cross
reference your ISP with InterNIC. If so, the Hydrocephalus Association may
be a source of information. Try http://www.hydroassoc.org (or .com if that
didn't work). They publish lots of information, a great quarterly newsletter
(which now comes over the email as well) and the "Link" directory for anyone
related to hydrocephalus who wants to be a contact. That includes parents,
older people like myself with hydrocephalus, relatives, professionals, etc.
while it's largely focused on their home state of California, the listings
include people world wide.

One more thought before I go -- ask to get her eyes checked. You'd be amazed
at how many people either don't think of it or simply don't believe that a
doctor can check a baby's eyes. It seems to be many (not all) people with
hydrocephalus have to wear glasses or contacts. I never took a poll to see
who on this list wears them. But even withou having hydro, the doctor
checked little Zophie's eyes at age 10 months and took only a few minutes to
diagnose her as farsighted and write out a prescription. And IF your
daughter doesn't need glasses, more power to her. Good luck!

-Sean
(Ontario Canada)