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FROM KAY (mom to Jasmine) This is a cut/paste from an email sent to me:Thank you for the response to the questions as that is very helpful and so glad that Luke doesn't have problems with his eyes and jaw.
It might be easier to tell you all about Jasmine from start to finish (i hope you like reading lol!!)
Jasmine was born on the 11/12/04 after a prolonged (and very painful) labor, as soon as she was out she had multiple fits and they gave her a muscle relaxant. its a wonder she survived that!!the med knocked her out cold for two weeks. all we were told was that she had extremely low muscle tone. she just layed there in an incubator, ng fed and had oxygen. after the two weeks she opened her little eyes for a few minutes then i don't remember her being awake much. they let us take her home after 18 days that was when we was in a living nightmare 24/7. i felt like a robot the first 3 months cant remember much. husband (paul) was at work and i was very stressed with no support.jasmine would be sick constantly then stopped breathing good job i have the sense not to leave her for 1 minute or she would be dead now.i know i can be dramatic but i was only 20 yrs old and had just had my first baby i didnt know what to expect but i knew this was not right. but after i had resuscitated her and phoned the hospital they would tell me to bring her in and put me in a room on my own and just tell me i was being dramatic then send me home. i just couldn't get it through to them that there was something gravely wrong. anyway it went like that for 3 months, then it all changed when i could not resuscitate her at all had to call an ambulance, was rushed to hospital where they worked on her for hours her heart stopped so they put a insulin jab in it and was bagging her for a long time. we live in lincoln and was at that hospital but it wasn't good enough so the recovery team came from sheffield to take her there, they didn't think she would survive the journey, but thank god she did. things changed dramatically from there she was on the ventilator for weeks and they could not get her off it so they decided to put a tracheotomy in. time passed she didn't sit up, hold her head, talk or nothing the first year she just layed there. she couldnt even swallow her own secretions. the only great doctor i have met was dr ritty in sheffield he did an nerve test on her and then she was diagnosed with cms. Finally we knew what we were up against, then a new problem, none of the doctors knew anything about it and could give us no advice.so i have just always gone with the instincts that mother nature gave me, and never been wrong yet. along the way she has had nissan fundaplaction and a muscle biopsy and a g -button.she really changed when she had the mestinon, big wide eyed although still straying. went to the loo everyday (i think we are the only mums that appreciate that) smiled instantly was the best moment ever, i cried. she walked when she was 2 that was ace and she has been storming on since then. and when she had the trach removed in December that was it, the best moment in my life she laughed and said oh no because her nappy fell to her ankles. and really it has gone from there we have broken from this world of silence to laughing everyday at the things she says!! she doesn't eat at all she never has, i was told never to try anything because she was so ill all the time, but that is one expertise i know nothing about, and here in the uk there is a shortage of speech therapists. but she can drink a little but will only have water (well at least she is healthy) she freaks out about her g button moving does luke? i have had to strap it down so it doesn't move or she complains all day. This the first time i have written her "story"
lots of love kay, paul jasmine and isabelle her little sister xxxx p.s. you can add the pictures to your blog i don't mind love to all
r1979@hotmail.co.uk
KAY (mom to Jasmine)
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