#16
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(07-11-2011, 07:27 PM)jacknchloesmum Wrote: Hi all been such a long time i not been around! well dad died on 17th june after 4 weeks looking after him 24 hoursSad so still hurts and missing him loads chloe birthday was 11th june and jack 18th june so we not really had good birthdays this year i have promised i will make it up to them soon. i am still ongoing with all dads paper work but i feel i need some closer to put him to rest and as usual lots of appointments for all of us, i have not been great my self for a while i put it all down to looking after dad but finding out i was seriously anaemic and just had a procedure to check am not bleeding internally. anyway ill stop moaning and try to get on more.. lucy & dan congratulation xxx
Nice to hear from you and just sorry for your loss Sad
When i typed the general message out to send to members i was thinking of you and knew what you were going through and hoped you would come on.
Hopefully your health will improve and what are they saying about the cause are they any closer to finding an answer?

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#17
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(07-12-2011, 10:55 AM)Nits Wrote: Tomorrow is Varuns 4th birthday. I'm busy getting all preparations done. Don't know y I'm not excited tho. I have been very depressed lately. For no particular reason. Don't really know what to do. Have stopped going to the gym and am eating even when i know im not hungry. Suddenly get all teary at times. Varun has gone off his breakfast ..so my day starts with making different items for his breakfast which finally need to be binned as he does not touch them Sad

I just hope I can get out of this phase.

Hope you feel better about things soon,you are probably just having a low spell at the moment . I get like that I can be optomistic one day and then something will happen and I feel fed up and stressed again. Having a special needs child is hard work especially one that doesnt like eating it drives me mad I cant understand it as the rest of family love eating !
I would get back to the gym or else you will put on two stone like me ! also try to meet with other people with children simlar as it makes you feel better that you not alone. If the low feeling goes on to long perhaps you could pop and see your GP Take care and hope you feel better about things soon
#18
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awww dan you made me cry again, am trying to be so brave we inturned dads ashes yesterday it hit me hard i am the youngest of 8 but i got all the responsibility of doing every thing even his will not one have helped me even though they know am ill but that's because i have always done it. and as for them finding out about what's happing they now blaming my ryhmy drug methatrexate so will see. how are you all? would love to have come on day out but we away at skeggy that week.
#19
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Hello, Matt's health has been going down hill since before xmas. Had meeting with specialist respiratory team at Great Ormond Street last week and they said they will never cure him and that it's more a case of managing it rather than curing. Slightly upset but hey it's life and we just want to make sure Matt has a good life. He is doing so well in school had his first sports day today and won a medal. We are so glad we pushed for mainstream school as his problems don't seem to be holding him back. xx
Heart Mum to Abigail 8 & Matthew 4. He stops breathing & needs to be resucitated. Has Bulbar Palsy & was born with a hole in his stomach, has mic-key tube fitted. Matt has heart/lung problems and is also tube-fed.
#20
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We're all doing ok here! I'm without respite at the mo as my mum, who does it, was taken in for an emergency hysterectomy in may, so shes still unable to lift Matty. Shes also just found out she has coeliacs, so all change there, then last week my dad had a seizure in the middle of the night. No wiser as to what caused it, doctors initially checked for an infection on the brain which was TERRIFYING as thats what caused Mattys GDD etc, but tests were clear, so it looks like adult onset of epilepsy. He's finding it a struggle to come to terms that he can't drive for at least 12 months.
But other than that, we're all good. Mattys bedroom and bathroom are completely finished - other than needing the hoist wiring up. He's doing FAB at school, he got a certificate of achievement the other day for sitting himself up unaided. He's also getting a new wheelchair, which is coming with self propel wheels, yay! Its a way off for him doing that but at least they seem to think he will some time in the future!
My eldest is preparing to go into y6 in September, she's going rule the school! Shes undecided about her choice of secondary schools so that will be, erm, fun!
My youngest is about to finish nursery, boo hoo! She still seems so little and such a baby, I can't believe she's almost a schoolgirl! I'll be a nightmare when she's there fulltime - I'm so broody already, the thought of not having a child with me all day every day will really set the ovaries ticking!
Just watched the first episode of the new series of torchwood, I'm a massive John Barrowman fan, so as soon as the Children were in bed, the curtains were closed and the phone was off the hook ready for it Big Grin
Looking forward to Legoland - did you ever get the email I sent Daniel?
Heart Raising the awareness of encephalitis, one baby step at a time.....Heart


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