Very glad to hear that Bianca has been released and smiling again. I hope
that things will continue to go well for her. It sounds like she's been
through so very much and it does take every ounce of strength to get through
this.

I do have to disagree on one thing, though. I feel like this is the
absolute worst situation as a parent - knowing your child is not going to
live a long life and the one they have is full of so much suffering is
torturous. I don't think I will ever recover from this when all is said and
done and while I love my child with everything in my heart, I will never be
the same again nor truly happy again. I do try to grasp for the good
things, but it's been a terrible blow as I'm sure it is for everyone here.
I sincerely can't think of anything worse.




>From: "Margie du Plooy" <margie@...>
>Reply-To: MPEIparentsupportgroup@yahoogroups.com
>To: <MPEIparentsupportgroup@yahoogroups.com>
>Subject: Re: [MPEIparentsupportgroup] Re: Bianca
>Date: Mon, 30 Jul 2007 09:03:16 +0100 (GMT Daylight Time)
>
>Good mornining
>
>Glad to advise that Bianca was released from hospital on Saturday and is
>doing better. Her chest however is just not clearing up. She is smiling
>again. Today her feed (Frebini) will be put on the drip like basis. (excuse
>but forgotten the correct terminology).
>
>Is Harry okey? I do so pray for these children. One does take encouragement
>from knowing we are not battling this alone and that there is always
>someone
>somewhere with a worse situation. Thank God He gives us the courage and
>strength to carry on.
>
>Liezel is so enjoying Nicholas who is starting to laugh but she hardly gets
>time to herself between the two. Fortunately for her Liezel has a very good
>support system. I help alot and Liezel's sister Jessica who is 15yrs help
>out as well. Then there are two very special friends who help when we are
>not around or available. So all round things do work out. This coming
>weekend on Sunday I will be looking after Bianca for the whole day whilst
>Liezel and rest of family go out for a change.
>
>Hope all is going better for everyone.
>
>Love and blessings
>Margie
>
>-------Original Message-------
>
>From: margaret1963pw
>Date: 2007/07/29 11:37:39 PM
>To: MPEIparentsupportgroup@yahoogroups.com
>Subject: [MPEIparentsupportgroup] Re: Hospital kids....
>
>Hi Rachel,
>What has the tempreture been this week in your area, Denis always fits
>more when it is hot, There is nothing more frustrating than watching
>your child having hundreds of sxs a day.
>One of the peads who worked with Den when he was little is (as far as
>I know) at the Miami Childrens Hospital, I wonder if it would be
>worthwhile trying to contact him. His name is Steven Malone and he is
>from Brisbane Qld, he was just lovely and so good to me.
>It took use a long time to get the MPEI dx, originally Den was dx with
>West Syndrome/Infantile Spasms, and our neuro referred us on to an
>epileptologist for a second opinion. Our neuro is a lovely man and he
>didn't want to tell the news without someone else confirming it.
>What rescue meds are you using and what 's your plan? We use rectal
>valium after 30 mins, then 15, then 71/2,then hospital after another
>71/2, for a midaz needle. So an hour after he starts before we go to
>the hospital.
>Margaret
>
>--- In MPEIparentsupportgroup@yahoogroups.com, "kiterain"
><kiterain@...> wrote:
> >
> > What gives this week?
> > We have watched Micah seize quite a bit this week. We have had to give
> > him rescue meds almost every day.
> > It makes me crazy to hear that our kids are back in the hospital again
> > and again. I wish that our children could move past this. We have been
> > so stressed out just hoping for a miracle this week.
> > It helps to hear about all of you and your struggles. I am sad that
> > our children have to go through this everyday.
> > Denise, I hope that your Harry boy is doing better. My heart has been
> > with you this week.
> > Margret, thanks for keeping us updated with bianca, precious little
> > one, I hope that Leizel gets some time to take care of herself some.
> > Nikki, I wanted to tell you to keep feeding Maddie, and if you have to
> > get that swallow test done. We have struggled with that whole process
> > for some time now and Micah was finally given an Ng-tube because he
> > was aspirating fluid into his lungs. We have been told to think about
> > putting a G-tube or Micky button in. I want to run screaming when the
> > docs talk to us about these things. We did go back to feeding Micah
> > thickened feeds this week because he has had such a hard time on the
> > Ng-tube. I also wanted to let you know that Micah has had so many
> > EEG's and continuous EEG's done and the docs still are reluctant to
> > give Micah a diagnosis of MPEI. It is so irritating because we feel as
> > though he matches everything very clearly.
> > Laura, How is your Rylie girl doing beyond the continued stress of her
> > feeding? Has she stopped vommiting yet? I just wanted to encourage you
> > to keep plugging away. I know we have felt so out of our element this
> > week, our prayers and thoughts are with you!
> >
> > Loves to all of you and your families, we send you hugs and kisses
> > because we just need them! Blessings to you all...
> > Rachel, (Micah's Mommy)
> >
>
>
>
>
><< elephant_en.gif >>

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