Hi All,

Niamh has also got a back brace but it is very new - last Friday
actually, but she is only wearing it at nights at the moment.
It covers her torso as she has developed quite severe scoliosis now.

Her orthopaedic surgeon said that her curve is not just postural
(because she cannot hold her back up) but also has a rotational
element to it which he suspects is part of her condition. All this
means to look at her, is that she has developed a bit of a hump on her
right back where her back rib cage sticks out.

Unfortunately we left it a bit late to intervene and it has now
affected her hips which are windswept to the left and her head which
always tries to turn left so I definitely think you should get in early.

Because of these problems we have also been given a special chair
which looks like a buggy but has a seat with lateral supports, head
supports and a pommel between her legs. It is called a kimba spring by
Otto bock and it is brilliant.
I actually think she is much more comfy in it when she is straightened
out and it looks like a trendy pushchair rather than a wheelchair
which is nice.

I do have a double buggy when I go out with both of them but I am
lucky in that Niamh is still very light (she has just hit 10Kg -
horay)although she is very tall. If she weighed much more I don't know
how easy it would be to push them. I managed with a sling for the
first 3 months but Conor just got too wriggly.

As for floppy head, we have a neck cushion that is like an open
doughnut shape which works quite well as it goes quite far round the
front too. We have also found a car seat that swivels to our car door
so we can put her in easily without twisting but is only goes up to
18Kg so may not be good for some of you. It is made by bebe confort
and is called axiss and it wasn't that much more than a normal car seat.

As for our babies - I do agree that they look similar. A student from
Alder hey asked for a picture of Niamh last year as they were doing a
project on MPEI and looking at physical characteristics so they may
well be something in it!

Take care all
Alison

--- In MPEIparentsupportgroup@yahoogroups.com, "kiterain"
<kiterain@...> wrote:
>
> Hi, This is Rachel, I am Micah's Mom. He is now about 16 months old.
> I was glad to hear about Denis getting a new chair and the brace.
> Micah is getting what they call a flexible TLSO, I guess it is a
> torso support to help him not get scoliosis. I was wondering how many
> of our children have these and if you have seen them actually help. I
> have also been wondering about wheel chairs and what is the best
> support for your children. My Physical therapist was also wondering
> how you all deal with the floppy head syndrom and what helps to keep
> them upright. We also just bought a new carseat for Micah thinking
> that it would work good for him but because his head is so floppy it
> does not seem to be working out that well. The chair does recline
> some, but it has this weird head peice that makes it actually harder
> for Micah to sit right then well. frusterating! We also just
> purchased a double stroller because we were wondering how we would
> take our children (I am due to have our next anytime) out and about
> and making Micah as comfortable as possible. Do you all have special
> vehicles to help get your children in and out, with extra room?
> Welcome to the group Alison! I have seen Niamah's pictures on Harry's
> site for so long I wondered if you would be able to join the group
> sometime!
> I had one more wonder comment, and that was I was thinking about our
> children and have any of the rest of you noticed how their eye
> lashes, cheeks, noses and lips seem to be the same, or kind of the
> same? I keep looking at these babies and I think they all look like
> our Micah, and because we know soooo very much about this disorder I
> wondered if there was any kind of "look" that was similar, or if I
> was just dreaming it up.
> Anyway, Micah has been super sleep these days and we have had quite a
> time getting his medication regulated so that he has waking times....
> eating and gaining weight have been hard, yet he gained 5 oz!
> Hurrah
> Thanks blessings to all,
> Rachel
> Sturgis Michigan USA
>