Dear Alison,
I am so sorry that Niamh is not doing very well. I will be praying
along with the others for a breakthrough in her health for your
little angel.

Instead of losing my faith when I had Micah, I pressed in to know who
God was more, and through this hard time of suffering he has placed a
mantle of strength and hope in my heart.

I just want to encourage you that he knows that you are strong enough
to endure this, even though it seems like it will end up taking you
down. You are still the perfect parents for Niamh, the best in fact!
Don't give up on your faith... let him comfort you.

I will be praying for a miracle... as usual, but also that you would
feel the comfort of the Lord.
Hugs and Love to you and your precious little one Niamh.
Rachel and Micah moo
--- In MPEIparentsupportgroup@yahoogroups.com, "Alison Maguire"
<alisonmaguire@...> wrote:
>
> Hi All,
>
> Thought I'd send a message to wish you all a happy new year.
> So far, our new year has not been very happy as Niamh is very
poorly.
>
> Over the last 3 weeks she has been suffering from severe dystonic
spasms
> that have been making her scream and she has been needing
increasingly more
> sedation as the weeks have gone on.
> Building up to a climax between boxing day and new years eve when
she
> screamed continually for 5 days and her sedation at full capacity
was only
> giving her an hour rest here and there. Her morphine dose has been
doubled
> with no effect.
>
> She stopped tolerating her feeds on new years eve and she is now not
> tolerating dioratyle either. (it just builds up in her
stomach/jejunum and
> then bursts the stopper open on her gastrostomy and floods out
again.)
> Her kidneys also appear to have shut down as she has had no urine
output for
> 3 days.
>
> She is requiring 6 litres of oxygen to keep her oxygen saturations
in the
> 90's.
>
> She has now been sleeping (without sedation) since new years eve
and she
> cannot be roused at the moment. The pallitative care team are
coming to
> visit us this afternoon.
>
> Just wanted the religious ones of you to pray for her (I lost my
faith after
> having Niamh) but at the moment I think we need all the help we can
get.
>
> love to you all
> Alison
>