Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 Sorry Lesley-didn't mean to send this post-of course I'm thrilled things are better for U and Amelie, but didn't feel I had anything significant to say-and had no intention of sending this ltr. It was hanging out in my " send later " box and I hit the wrong button (story of my life lately) Pls disregard, with my apologies. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 Lesley- First off -- I am so thrilled to hear how well Amelie is doing!! Unbelievable!!! I have video of early feeding with Aubrie. An entire feeding session from start to finish explaining how much, how the pump works, the oral part, etc. At that time, she got a bit by mouth and the rest by tube via pump. It's home video so not very grand, but sure gets the idea across. I think I have a separate session with the feeding from start to huge reflux vomit. I would think there's time to get a video to you if you think it would help with your presentation. There is good footage of how hard she has to work to manage the swallow. Michele W Aubrie's mom 8 yrs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 > > Lesley- > > First off -- I am so thrilled to hear how well Amelie is doing!! > Unbelievable!!! > > I have video of early feeding with Aubrie. An entire feeding session from > start to finish explaining how much, how the pump works, the oral part, etc. > At that time, she got a bit by mouth and the rest by tube via pump. It's > home video so not very grand, but sure gets the idea across. I think I have > a separate session with the feeding from start to huge reflux vomit. I > would think there's time to get a video to you if you think it would help > with your presentation. There is good footage of how hard she has to work to > manage the swallow. > > Michele W > Aubrie's mom 8 yrs Dear Michele Fantastic Idea, we have all visual aids in the classroom, so this would be cool I have no footage of Amelie, never had her home long enough to find the camcorder!! My home address is 22 Amberhill Way Boothstown Worsley Manchester M28 1YJ England: where the sun rarely shines!!! Really kind of you Lesley x > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 Lesley, Wow, what wonderful news. There is grace in this world sometimes! And yahoo to her cry! For your classes first go to http://www.chargesyndrome.org/about-charge.asp in the CHARGE Foundation webpage to look at the diagnostic criteria for CHARGE and the percentages. Then go to " Resources " at http://www.chargesyndrome.org/resources.asp. Click on View American Journal of Medical Genetics Articles. That will help a little maybe. You can also go to DB Link pages including http://www.dblink.org/lib/topics/charge-growingup.htm And that's just the beginning. Good luck. Bonnie, mom to a 23, Patty CHARGE 21, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 Oh michele, how funny although thats a whopper of a word I dont even know what it means, but my due date is 27.03.06 although I have beeen told to have it ready two weeks early incase we are brought forward. another funny story, when we pulled the dates out of a hat i was first in the class and we will be doing three students every week starting 16th Feb, so i pulled the ticket out and it said 27th March, i shreeked 'oh no thats my dads birthday' the lecturer looked at me and really sympathetically said 'no problem due you want to pull another quickly before they've all gone' I replied' oh no its not a problem, my dads dead, its just an unlucky day for me' the whole class was in uproar, i didnt mean it to sound so funny but we justall cracked up laughing!! not because hes dead of course.. thanks a mill lesley xx > > > > Lesley- > > > > First off -- I am so thrilled to hear how well Amelie is doing!! > > Unbelievable!!! > > > > I have video of early feeding with Aubrie. An entire feeding > session from > > start to finish explaining how much, how the pump works, the oral > part, etc. > > At that time, she got a bit by mouth and the rest by tube via > pump. It's > > home video so not very grand, but sure gets the idea across. I > think I have > > a separate session with the feeding from start to huge reflux > vomit. I > > would think there's time to get a video to you if you think it > would help > > with your presentation. There is good footage of how hard she has > to work to > > manage the swallow. > > > > Michele W > > Aubrie's mom 8 yrs > > > > Dear Michele Fantastic Idea, we have all visual aids in the > classroom, so this would be cool I have no footage of Amelie, never > had her home long enough to find the camcorder!! > > My home address is > > 22 Amberhill Way > Boothstown > Worsley > Manchester > M28 1YJ > England: where the sun rarely shines!!! > > Really kind of you Lesley x > > > > > > > > > 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@c... 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@c... . > 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 January 10, 2006 Report Share Posted January 10, 2006 I am glad things are looking up, tell her to keep it up!! She will be home and running circles around you before you know it!! Crystal and Eva (8 month charger) > > Dear all > > Amelie looks well I have to say for the first time since that > dreadful 16 December, she moved to a ward today and so we wont leave > her its 24 hour alert watch, I am home because of college tomorrow > so Darren is with her tonight. > > She is the same as before all this and has started to smile giggle, > and respond hugely to her family, although I think all of this has > helped her to develop the difference between being on her own, if > you sit and stop playing with her for a few seconds, she develops > this new found cry. which in one way is cool her brain must be > working but on the other hand she become rather demanding 'little > minx'. > > We asked about taking her home!! but not yet the respiratory said we > could review that it about a week, as she has lost weight and the > jejunum tube has been in since Thursday I think, so they need to see > if she will start to gain weight, if not god knows!! > > We are going to meet Darren at the crack of dawn to dress up her > cot, with balloons and banners for her big day, although we will > celebrate properly when she comes home. > > I asked when they think surgery will go ahead, I get the feeling Mr > Morabitos team are waiting for Bianchi after all, the nurse today > said so , i thought he didnt do surgery anymore, but maybe he has to > be in theatre to supervise or something. > > College got back to normal today, inundated, 3 new assignments, and > I have decided for sure to do my seminar on CHARGE syndrome, so I > put this down on the lecturers sheet, she looked a little baffled, I > thought you should live with one I'm baffled permanently, it wasnt > until she took the sheets away, and then gave us a huge talk on what > she will expect as part of the seminar. > I am so thick at times!!!, I have started my power point and felt > confident i can chat for 40 minutes on charge with all its issues no > problem, my mother said I have the gift of the gab, what I didnt > realise is she wants it all backed up with substanial figures, proof > of studies and research lots of it, OMG LOL > > So if I start pestering You all you will know why, > I hope you dont mind I have Kennedy's surgeries and home page > in my file, I also downloaded the child A she was in on Dysphagia to > help me, as i want to concentrate on the feeding issues as they have > been a nightmare for Amelie. > > Thats the Chan update for now, we feel calm and confident she will > be back with us next week for sure just needs a little fattening up. > > Love all > > Lesley x > Mum to le 11 Olivia 9 Fleur 2 And Amelie one in 4 hours!! > Oh and a wonderful wife to Darren, what a lucky boy he is!! lol > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 Lesley, Glad that Amelie is doing so much better--you were due for some good news! Happy first-year birthday to her!! (It's today, the 10th, right?) I hope she gets to come home soon. Thanks for keeping us all posted on her progress. , mom to (4 next week!) --------------------------------- Yahoo! Photos – Showcase holiday pictures in hardcover Photo Books. You design it and we’ll bind it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 , ,I am useless about this kind of stuff, my computer skills are very poor I am on a course to improve, but my progress is slow, I am not meant to be a whiz kid on these machines, my husband bought me a laptop for college today a birthday pressie i was delighted,especially in case I get my place for university to make things easier,( might be because no one can get on this one because I am hogging it!!) and i cant get that started so the man at the shop said bring it back he will get me up and running!!!!!!!!! how embarrassing is that!! also I managed to set it to USA mode and now my keyboard has gone crazy and nothing is where it should be when i try and type things, do you catch my drift here...... useless. words like zipped, burn a disk dont know? never done that yet in class, dont worry Michele if its a trauma, I am past caring at present, I feel as though my brain has had enough it aches with all this learning, and when i get back to the shop on Wednesday they will all be laughing at me i am sure. cheers lesley > > > > Lesley- > > > > First off -- I am so thrilled to hear how well Amelie is doing!! > > Unbelievable!!! > > > > I have video of early feeding with Aubrie. An entire feeding > session from > > start to finish explaining how much, how the pump works, the oral > part, etc. > > At that time, she got a bit by mouth and the rest by tube via > pump. It's > > home video so not very grand, but sure gets the idea across. I > think I have > > a separate session with the feeding from start to huge reflux > vomit. I > > would think there's time to get a video to you if you think it > would help > > with your presentation. There is good footage of how hard she has > to work to > > manage the swallow. > > > > Michele W > > Aubrie's mom 8 yrs > > > > Dear Michele Fantastic Idea, we have all visual aids in the > classroom, so this would be cool I have no footage of Amelie, never > had her home long enough to find the camcorder!! > > My home address is > > 22 Amberhill Way > Boothstown > Worsley > Manchester > M28 1YJ > England: where the sun rarely shines!!! > > Really kind of you Lesley x > > > > > > > > > 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@c... 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@c... . > 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...
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