Hi Andrea!

Sounds like you've been through the wars, but this group is a good one, and
we'll all be there for you as Lottie (and Peter!) progress.

Just to let you know a bit about me - Amy was born in Jan 04, the first check
revealed nothing untoward, but at her 8 week check, the doctor couldn't adduct
her hips fully. He said he didn't think there was a problem, but he wanted to
try again in a few weeks' time. He tried again, and still couldn't do it
properly, so he referred us to the hospital. Again, he said he didn't think
there was anything wrong, but he wanted to be sure. Thank God he did! The first
appointment was horrible - one of the consultant's team discovered she has
bilateral CHD, so he got the consultant to have a look. There then followed what
seemed to be an unending line of 'doctors' pushing and pulling my poor baby
apart. In the end, I objected and they stopped.

Since then, Amy was in a harness for 9 weeks 24/7 (which involved 2 nights at
the very beginning, where she was like a newborn again, but then she got used to
it and didn't mind one little bit). Then she was on for big sleeps only for 3
weeks (lunchtime and night), then the consultant said that if we were coping OK
and if she was coping OK, we should try to keep it on at night time for as long
as we could. He said, though, that if she started to object, then it was OK to
bring her out of it completely. He said he thought her legs were the same
length, but if they weren't both in, he said that there was nothing they could
do now until she is 12-15 months old, when it would be surgery. I found this
hard to believe, but we go back in a couple of weeks to see if everything is OK.
If it's not, and he suggests surgery, we'll get a second opinion.

After that appointment, she started to wake up every half hour through the night
till about 1.30/2 - I think cos she was exercising so much during the day and
suddenly at night she couldn't move her legs, so she was either frustrated or
sore. So after 5 nights, we took her out completely, and I am now dreading the
next appointment, which hubby can't come to as he is away on business that day.

So - sorry to go on, but I just wanted to let you know that we all completely
understand where you're coming from, but babies do adapt very very quickly - it
is far more harrowing for the parents, believe me! And as has been said on so
many occasions, I really think it's early detection and perseverance that will
win through.

As an aside, my mum's cousin's granddaughter (!) was born with 7 toes on each
foot, and the long bone and short bone in each leg the wrong way round (ie where
a long bone should be, it was short, and vice versa). They have been sorting out
the problems, she is now 3 and they have rectified everything and she is a
perfect little girl now. They really can do wonders.

All I can say really is write down a list of questions you want to ask the
consultant - there will be plenty, and you'll forget a lot of them - make sure
not to forget to ask about bathing/car seats/feeding positions, etc, etc - and
keep us posted. We'll be thinking of you on Monday, and will be here when you
get home if you need to talk.

Take care.

Barbara & Amy
----- Original Message -----
From: andreajean65
To: clickyhipsclub@yahoogroups.com
Sent: Thursday, September 02, 2004 10:23 AM
Subject: [Clicky Hips Club] I'm new here!


Hi everyone
Where do i begin? Well my name is Andrea. I have 4 children - 3 boys
(14 yrs,11 yrs & 4 1/2 years) and a daughter, Lottie, 10 months.
Lottie was born on 26 October 2003. Though I dearly love my sons I
was so pleased to have a daughter. She had her checks and we were
told everything was ok, I think they were more concerned about her
palate (during scans in pregnancy, as well as physical exams) as my
third son was born with a bilateral cleft lip and palate. From the
start we found Lottie very demanding, she seemed to cry endlessly
unless she was being held.We had problems with breast feeding, for
some reason she just couldn't get the hang of it, my first 2 were
totally bf and I expressed for Peter for 3 months (because of his
cleft he couldn't suck). I was very upset that I couldn't bf Lottie,
I hadn't imagined it would be a problem at all! Anyway, at lottie's
7 month check the health visitor examined her and compared the
length of legs, one was shorter! We were referred directly to the
children's dept at our local hosp where they dropped the bombshell
that her left hip is dislocated. A week later Lottie was having a
scan and x-ray (in fact she had 2 x-rays because she put her hand on
her hip during the first x-ray!!). We saw the consultant briefly and
he referred us to Great Ormond Street. It was very scary to hear him
say! We've been referred to Mr Jones and will be meeting him next
Monday 6 September. I hope it will actually be him that we see - the
appt letter says it may be a member of his team! I seem to spend my
life at hospitals!! I am not looking forward to it and wish this
wasn't happening to mine or anyone elses baby! Peter's cleft is bad
enough but though he will be having surgery untll he's 17/18 (he's
had 4 ops so far, 3 for his cleft and one for a hydrocele) it isn't
constant and intense for a long period of time. I honestly can't
imagine how we will cope. Also, Peter starts school next Tuesday and
I really don't want to be away from him. The others are older so it
isn't quite so bad. Sorry this is such a long intro! I'm so worried
about everything. At least I've found you all!
Thanks for listening, Andrea


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