Guest guest Posted December 20, 2005 Report Share Posted December 20, 2005 Thanks for the update, Simon. pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2005 Report Share Posted December 20, 2005 I will keep her in my thoughts and prayers. Hugs, Crystal and Eva (8 month charger) > > Hi everyone > > I tried posting this earlier this evening but my mail is bouncing, so I am > masquerading as Flo. > > Just thought I would let you all know that there has been no change with > Amelie since yesterday so she is at least stable. > > Simon > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2005 Report Share Posted December 22, 2005 Lesly, You give that little girl a hug for me and Eva, and tell her to keep being strong. I know there is an angel looking over her. Hugs, Crystal and Eva (8 month charger) > > Dear All > > The plan was today to ween Amelie off the oscilator but it didnt > happen, she was de satting too often so they will try again > tomorrow, it would be better for the physio to get the rubbish off > her lungs if she were on the conventional ventilator, because > apparently the oscilator shakes the lungs open and keeps them open a > little longer than the norm but it proves difficult to move the > secretions in order to get them up, I think her arrest were due to > pulmonary and not her heart her cardiomyopathy (HOCM) is no worse > than the echo done 6 weeks ago so this is another positive. > > Stable today had another blood transfusion and another chest xray > this was her 64th chest xray since birth I cant believe it, there > was a slight improvement on this xray which is positive and also it > is now day 6 since the two arrests so this is good that she isnt > worse. > > So today I like the word stable. > > I put the poem up today with her sisters rosary beads on her cot, > she looks peacful and with this second transfusion she is getting a > little colour back. > > The bruise on her sternum from all the compressions looks smaller > and this pleases me most as she looked so wounded with it, when she > went into the first arrest apparently they put a needle directly > into her bonemarrow with the life saving drugs because they couldnt > get a vein, this looks very sore and is still oozing, they said it > didnt go in, in very sterile circumstances which they couldnt help > and so they are hoping its not infected. > > I feel calmer today than yesterday, we have prepared the children > that Amelie will not be home at christmas and well their were tears > but rather get her home one day than never! > > The community team have been great they organised extra nursery > places for Fleur at her nursery and they are paying for them, which > is very kind she is only two and doesnt really know whats going on. > > Hopefully positive news tomorrow I come home at nights and Darren > goes back for me , I feel better knowing one of us is with her. > > Thanks for all the inspirational posts and prayers > > Love Lesley > Mum to le11 Olivia 9 Fleur 2 and Amelie nearly 1 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2005 Report Share Posted December 22, 2005 theres an angel over us all xxxxxxxxxxxxx > > Lesly, > > You give that little girl a hug for me and Eva, and tell her to keep > being strong. I know there is an angel looking over her. > > Hugs, > Crystal and Eva (8 month charger) > > > > > > Dear All > > > > The plan was today to ween Amelie off the oscilator but it didnt > > happen, she was de satting too often so they will try again > > tomorrow, it would be better for the physio to get the rubbish off > > her lungs if she were on the conventional ventilator, because > > apparently the oscilator shakes the lungs open and keeps them open > a > > little longer than the norm but it proves difficult to move the > > secretions in order to get them up, I think her arrest were due to > > pulmonary and not her heart her cardiomyopathy (HOCM) is no worse > > than the echo done 6 weeks ago so this is another positive. > > > > Stable today had another blood transfusion and another chest xray > > this was her 64th chest xray since birth I cant believe it, there > > was a slight improvement on this xray which is positive and also > it > > is now day 6 since the two arrests so this is good that she isnt > > worse. > > > > So today I like the word stable. > > > > I put the poem up today with her sisters rosary beads on her cot, > > she looks peacful and with this second transfusion she is getting > a > > little colour back. > > > > The bruise on her sternum from all the compressions looks smaller > > and this pleases me most as she looked so wounded with it, when > she > > went into the first arrest apparently they put a needle directly > > into her bonemarrow with the life saving drugs because they > couldnt > > get a vein, this looks very sore and is still oozing, they said it > > didnt go in, in very sterile circumstances which they couldnt help > > and so they are hoping its not infected. > > > > I feel calmer today than yesterday, we have prepared the children > > that Amelie will not be home at christmas and well their were > tears > > but rather get her home one day than never! > > > > The community team have been great they organised extra nursery > > places for Fleur at her nursery and they are paying for them, > which > > is very kind she is only two and doesnt really know whats going on. > > > > Hopefully positive news tomorrow I come home at nights and Darren > > goes back for me , I feel better knowing one of us is with her. > > > > Thanks for all the inspirational posts and prayers > > > > Love Lesley > > Mum to le11 Olivia 9 Fleur 2 and Amelie nearly 1 > > > > > > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca or > email info@... . > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2005 Report Share Posted December 24, 2005 Lesley- I'm glad to hear that Amelie managed the transition well. I hope she continues to gain strength. That pinkness in her cheeks must be a joy to behold after all you've been through. I hope you find some peace and " merry " in the season in spite of the difficult situation. Take care of yourself. Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2005 Report Share Posted December 24, 2005 Hi Lesley, Really pleased to read of Amelie's progress, been thinking of you all everyday. Look forward to another update when you are able, and will be hoping for more good news. Keep fighting little one! Love and best wishes, is, Neil and > > Dear All > > Amelie was weened of the oscilator during the night onto a > conventional machine, I think this was tactical so we couldnt watch > as things always seem to happen during the night! she has managed > well all day and if she doesnt relapse they will start to give her > chance to do some breaths herself once they have reduced the amount > of sedation. > > I get good vibes especially today she looks so beautiful and lots of > blood has pinked her up. The only apprehension will now be the lack > of oxygen, time will tell. > > SIMON, glad you got the surgery done hit the red not the painkillers > and you will be fine!! dont hit them both together though!!! > > A MERRY CHRISTMAS TO YOU ALL, I WONT BE POSTING TOMORROW STAYING > WITH AMELIE, HERES TO A BETTER NEW YEAR FOR EVERY CHARGER AROUND THE > WORLD, ESPECIALLY THE BABY CHARGERS WHO NEED TO GROW A LITTLE AND > GET STRONGER. > > Lots of love from the UK > Lesley & Darren > le Olivia Fleur and precious Amelie xxxxxx > > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca or > email info@... . > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2005 Report Share Posted December 26, 2005 Dear All Hope you all had fun yesterday, our house was strange my thoughts were constantly with Amelie although we got through the day for the sake of our other three girls, who had a great day. On christmas eve santa came to Amelies bed he left me a great photo of the two of them and he left some presents too, this immediately set me of and a good cry followed, but my picture will be with to treasure forever. Amelie looks so well, although this morning a little disapointed, they had planned to ween Amelie of the vent onto Cpap because she was so good, but her pressures dropped and she had an unsettled night, so now I am worried she may relapse I dont ever feel safe when shes intensive you just dont know what the next hour brings. Darrens with her this morning whilst we try and clean up the mess, we had a good day yesterday considering but it was a strain up and down to the hospital and no sooner did we arrive back it was time to go again, my family held onto the girls at my brothers so they didnt really notice any of it which is good. love to you all, your prayers are pulling her through. A funny story to tell you, my priest phoned Wednesday night to say she is still in the sick book and prayers are daily, but he also said 'I have reserved and dedicated midnight Christmas eve mass just for Amelie, and you know what I get a full house at this mass so she will gets lots of extra prayers', Bless him I think its all working thats the main thing. Lesley Mum to le 11 Olivia 9 Fleur 2 and Amelie almost one please god Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2005 Report Share Posted December 26, 2005 wow what a gorgeous man like us all he is and the church is praying for you and it IS working course she is getting better hugs to you > > Dear All > > Hope you all had fun yesterday, our house was strange my thoughts > were constantly with Amelie although we got through the day for the > sake of our other three girls, who had a great day. > > On christmas eve santa came to Amelies bed he left me a great photo > of the two of them and he left some presents too, this immediately > set me of and a good cry followed, but my picture will be with to > treasure forever. > > Amelie looks so well, although this morning a little disapointed, > they had planned to ween Amelie of the vent onto Cpap because she > was so good, but her pressures dropped and she had an unsettled > night, so now I am worried she may relapse I dont ever feel safe > when shes intensive you just dont know what the next hour brings. > > Darrens with her this morning whilst we try and clean up the mess, > we had a good day yesterday considering but it was a strain up and > down to the hospital and no sooner did we arrive back it was time to > go again, my family held onto the girls at my brothers so they didnt > really notice any of it which is good. > > love to you all, your prayers are pulling her through. > A funny story to tell you, my priest phoned Wednesday night to say > she is still in the sick book and prayers are daily, but he also > said 'I have reserved and dedicated midnight Christmas eve mass just > for Amelie, and you know what I get a full house at this mass so she > will gets lots of extra prayers', Bless him I think its all working > thats the main thing. > > Lesley > Mum to le 11 Olivia 9 Fleur 2 and Amelie almost one please god > > > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca or > email info@... . > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2005 Report Share Posted December 27, 2005 Lesley- I'm glad your Christmas was decent -- as good as possible under the circumstances. You are such a strong woman -- managing to find the energy within yourself to be there for the other girls and to maintain your hopes for Amelie. Keep the faith, hang in there, and we'll all keep praying. Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
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