Sunday, September 26, 2010

in the begining

Hi everyone this is a blog for  my young son lucas swaffield who has been diagnosed with  hypotonic quadripegia cerbral palsy,dystonia he is feed through a gastrostomy and has congenital strabismus this blog is about our daily, weekly and yealy triumphs and tribualations in the hope that we may help other familys in the same situation.
we have been blessed with 2 fabulous boys my eldest is charlie and he is 4 and lucas is 18 months old.
we have been in out of hospital since he was born in march 2009.
it firstly started with bringing him home and not feeding at all evertime we tried to put a bottle to hes mouth he would screm.
he failed to thrive and i started to really get worried when he was around 3 months old after trying everything to get him to eat.
we went for a daily trip into rockhampton and waited to see our pead leoni grey.
we walked in and told her everything that had happend and things that werent hapening she layed him down on the bed and looked over him he was smiling and liking leoni i was laughing and telling leoni some of the things he was doing as she looked over hes movements witha fine tooth comb.
So we then sat down and i was exoecting her to say ok i want u to go home and out lucas on this formula and try theses teats and come back in a month and we will see how he is going:)
Well at the moment my whole world was shattered!!
she began to tell me that we will b admitted to the hospital and lucas will need a nasal gastric tube inserted as soon as we get there and that she was worried lucas had early signs of cerbral palsy.
i began to start crying and hysterically asking her excuse me what do u mean what is cerebral palsy what does that mean?? i knew that this wasnt good!!
i ramg my hubby and told him he had to leave work and get into rocky all while bawling i dont know how he understood me.
next phone call i rang my dad and ill never forget the sound of hes voice change as i told him that the doc had told me that lucas has early signs of cerebral plasy i was in a state and he said "ohh bear im so sorry im so sorry".
i than ramg trish wes's mum and as i was still crying i told her to meet us at maccas they we had to go back to the hospital in an hour and get lucas admiiited.
we got to maccas me a blubbering mess kept my sunnies on and sat outside and  mum went and got me a bottle of water as i told trish what leoni had told me.
I went back to the hospital and sttelted in and waited for doctors to come and see me and tell me what was next??
they come and informed me that they  would insert the tube down lucas's throat and we waited.
my mum was with me the whole time and i said to mum i cant watch them do this to him i cant , she said why dont you go down and get a drink and i will call u when its done.
i was stuck i wanted to b there but didint think i dcould watch them do this to my little man:(
after it was done little did i know that wthis tube getting put down my sons throat would become almost a daily occurance for me as he pulled it out constantly!!
everytime we had it done we would have to wrap him in a sheet and hold hes head back while some doctoer shuved it down sometimes missing the osophegus and haveing to pull it out and then start again it was fucking hell!!!
they then had to do xrays everytime to makesure that it was in hes stomach so it was lengthy progress each time!!
We stayed in hospital for a week and many docs look at us and i learnt to feed my son through an ng tube.
Things in life couldnt get any worse in my book at  the moment haaa well little did i know it all was bout to get worse and worse.
We had trip planned down to royal childrens hospital where we would stay for a week where we had nuerologisits,meatabobolic ,physio,occupational therapists,dieticians,social workers to many to rember really but all these teams came in and out of lucas's room look at him ask me to tell them lucas's story which i told over and over again and not one of them would tell me what i wanted to hear
"its ok mrs swaffield your son is just develpomentally delayed as me and my husband still believd that he did  not have cerebral palsy"??
after brisy trip we went home and tried to deal with all of this the best way we could we still had hope that his was all a mistake which we did until he was formally diagnosed when he was just under 12 months old!!
our other trips to brisbane have been for eye operations, mri brain scans,he had a button put in hes belly when i couldnt handle putting the tube down hes throat any longer,we have daily trips into rockhampton for therapy and too pick up equipment . It has taken me 18 mnths to get to a point where i know i can only take day by day if i think to far ahead with stuff i get myself into a state of panick and tears.
We now are with cp league in rockhampton and disability services and now have a special giraffe chair to help him sit up and the most recent and a very big step the monkey standing frame:)
aniways time to sign off for now looking back and writing this has overwhelmed me and i  really dont know how im sitting here sane today lol

talk soon xx

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