mixed bag today

[sumayyah]

have had a good day diet wise but had the fun of seeing a new consultant for my daughter today

he listened to how ill shes been since the summer and was rather interested in her last 2 blue light trips to hospital. he agrees it wasnt croup, she just did not present as a child with a virus

well he decided he was going to operate and had me sign consent there and then. tonsils and adnoid removal i get but she also needs surgery further down her throat and that im dreading

stayed strong on the diet but to be honest i want to be sitting in a corner with my pals ben and jerrys sobbing

she doesnt understand whats happenning bless her and shes going to be put on the ventilator, she always struggles to come back off it

i just hate that its down to me, my bad judgement caused this and she has to put up with the consiquences

this will be the third surgery shes had and her fourth time under a GA, it sucks

 

[mummyoftwo2]

Sorry hun and be strong,I dont know how old is your daughter but when operations are when young they hardly even remember what are they going through.How can it be due to your bad judgement?the only think that we do for our children is love them and you really love you baby girl and that is what are you doing,doing what is best for her and loving her with all your heart.
Forget about your friends ben and jerry,here you have more friends that listen to you and without the extra calories.You are doing sooooooooooo well with the shred and the diet that you dont wanna trow it for a little set back.Just think about how hard will be getting back into ketosis.
Love and hope everything goes well.

 

[mummyoftwo2]

Sorry I have just look againyour post,111HAVE YOU REALISE YOU HAVE LOOSE 100LB ALREADY,100 LBS,WOOOOOOOOOOOOOOOOOOOOW

 

[xKimmiex]

Ohh I'm so sorry hun, I'm sure she will be okay, what's wrong with her? X

 

[sumayyah]

my baby girls 5 and a half now and due to her asd she doesnt forget easily

its my fault shes the way she is as i chose to marry a dick who turned violent while i was pregnant and my body let her down she ended up being born 15 weeks too early

whats wrong with her if a long list, the latest problem is her airways too narrow making breathing even more difficult ( she already has lung disease and its making swallowing harder, meal times take 2 and a half hours of her gagging and coughing, shes aspeirated food into her lungs a few times now and she is still peg fed while she sleeps

it just friggin sucks and i cant do bugger all to help

 

[SacredSilence]

Huge huge hugs Xxx

As a mum of a SN child who spent most of her first years in and out of hospital and having major brain surgery etc etc etc I know EXACTLY where you`re coming from.

I wish I could take away the worry and pain that you`re going through

All I can offer is large shoulders and big ears Xxxxxx

 

[mummyoftwo2]

Sorry,I dont mean bad about what I said before,but you didnt know that was about to happend when you marry him,I know is difficult and that you can handle it.Be strong babe.
It may sound a bit patronising but I asm not trying to be,honest.

 

[MinnieMel]

Hi Claire,

I am sorry to hear about Kaya possibly needing another operation (can you get a second opinion or would you have to pay for that)?

Please do not blame yourself for what her father did. I do not know if you are a person of faith or not... but as the mother of a special needs child -- when someone offers me their "sympathy" -- I thank them and tell them that I do not need it, as I believe that God (Allah, Budha, etc.) Doesn't Make Mistakes and my daughter is exactly who she was meant to be. I am not trying to be rude, but honest.

Kaya is who she was meant to be, and I know it is very difficult for you -- but you have done very well, thus far.

My best to you -- and congrats for not calling on Ben and Jerry.

MinnieMel

 

[SacredSilence]

Please do not blame yourself for what her father did. I do not know if you are a person of faith or not... but as the mother of a special needs child -- when someone offers me their "sympathy" -- I thank them and tell them that I do not need it, as I believe that God (Allah, Budha, etc.) Doesn't Make Mistakes and my daughter is exactly who she was meant to be. I am not trying to be rude, but honest.

Kaya is who she was meant to be, and I know it is very difficult for you -- but you have done very well, thus far.

My best to you -- and congrats for not calling on Ben and Jerry.

MinnieMel

Personally, I`m not religious. But I share the same sort of sentiment with you hence the poem in my signature Xx

 

[sumayyah]

hey mel, no need for second opinion i know she needs the surgery, shes deteriorating and i do not want to go back to how she was her first year, that still haunts me. she was in for a year on ventilators and the bipap machine with me regularly being told to say goodbye, i cant handle that again so i know her airway has to be sorted out but how much can one child take?

 

[MinnieMel]

Claire -- Children are very resilent. Also, this is all she knows and so she will soldier on. I suspect it is much harder on you, because you feel that things could have been very different. Let's hope that this operation goes smoothly and makes Kaya's quality of life much better.

MinnieMel

 

[sumayyah]

Claire -- Children are very resilent. Also, this is all she knows and so she will soldier on. I suspect it is much harder on you, because you feel that things could have been very different. Let's hope that this operation goes smoothly and makes Kaya's quality of life much better.

MinnieMel

thats the thing, poor things that used to hospital she acctually likes the ambulance rides and having the docs rush round her, she only becomes distressed when having canulas inserted or being ventilated, even then ive got photographs of the little weirdo grinning on the ventilator

 

[MinnieMel]

If you were there to take her photo... then the smile was all for her mum.

MM

 

[MinnieMel]

Night Claire... I have to get up tomorrow for the first time since last year to see my DD off to school. Keep me posted on how things go with Kaya... I'll keep her in my prayers (you, too).

MM

 

[nicola444]

Sorry to hear you are going through all this stress and worry, cannot imagine how it must be but empathise. Stay strong for your daughter, sending you a big hug and will keep you both in my prayers.

 

[MinnieMel]

Good Morning Claire and Kaya,

I hope today started off well for you both. I got my DD off to school with few issues... though we wereboth reluctant to get up and get going at first!

The sun is out here in Cambridgeshire for the first time since last year (I think). It certainly helps to lift my spirits.

Take Care,
Mel