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Hi Margaret
Bianca is almost 29 months old. She has spent most of the time in hospital. Like Liezel said yesterday. Thanks for visiting home for 2 weeks. Bianca was on Peidasure for quite a well and did well on it until the dietrician change her diet recently to Frebrini high fibre to try and help her. It is hard for us to see her suffering. We can cope with her disability but the suffering takes its toll with us. It is encouraging to know that we are not the only ones dealing with this syndrome but I do so pray that a 'miracle' occurs to release these children from their suffering. Bianca's brother Nicholas who is now only 7 weeks old is 100% healthy. Extensive tests were done on him and he is just so cute. He truly makes up for Bianca's lack. But nothing would ever fill the special place Bianca has in all our hearts. She is such a strong brave little fighter. She was not medically meant to make 9 months.
Hope all the other special children are doing well.
Blessings
Margie
-------Original Message-------
Date: 2007/07/25 12:40:15 PM
Subject: [MPEIparentsupportgroup] Re: Bianca
Hi Margie,
How scary for Liezel and you!!!
Denis is on a formula called Pediasure. I mix it up and put it in a
container which I hang up on an IV pole, and the tube goes through a
kangaroo pump and is pumped into his button. I do 2 feeds one in the
day and one overnight.
Those photos are just gorgeous!
How old is the baby?
Hello to everyone else
Margaret
--- In MPEIparentsupportgroup@yahoogroups.com, "margiedup"
<margie@...> wrote:
>
> Yesterday (24th July 2007) Bianca gave us a big scare. When her mother
> went to check on her early morning she found that she was blue in the
> face and scarcely breathing. I rushed over from work and found Liezel
> battling with Bianca. Liezel had sucked her as Bianca had flem in the
> throat and which is a daily routine but Liezel was not happy with the
> sight of the flem nor Bianca's colour. Also Bianca had only 40mls feed
> when she returned all plus her medication. So we did what has become a
> regular occurrence with Bianca - called the doctor and took Bianca in.
> The doctor on seeing her said sorry that he has to have her admitted
> again. Bianca was barely 2 weeks at home. So off we took her to
> hospital again. Apparently Bianca has a bad respiratory infection
> again. Last night her colour was good and she had a peaceful night.
> Doctor is administering antibiotics and having Xrays done of her chest.
> We are concerned about Bianca's feet and hands that are very swollen.
> Bianca is on a special Frebini diet which they are going now to put on
> a drip like system. That means that it will be attached to the "Mickey"
> button. Will keep in touch.
>
> Love Margie
>
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