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Time with Baby Xavier

  • Update for 23/04/2014

      23 April 2014

    So we have been trucking along for the past month at home most of the time without having to take Xavier back into hospital and start some sort of routine and normality with our precious boy. I keep wondering, if I breathe, will the wheels come off some time soon... so today he had the homecare nurse come to weigh him and do all his obs and numbers. Xavier had only put on 60grams in the past 2 weeks.... Is this the wheels coming off? The hospital has moved forward his next check up date which will be the 1st May. Sigh... I feel nauseas just thinking about it. Everytime Xavier went for a check up there is always something else that has gone wrong or needs fixing. Fingers cross this time its just a routine check up with no hiccups.

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  • Update for 02/04/2014

      2 April 2014

    We are so overwhelmed by everyone's generosity towards our cause. We thank you all from the bottom of our hearts.. I have tears of gratefulness running down my face. In our hour of need strangers can be so kind and generous. God bless you all

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  • Update for 29/03/2014

      29 March 2014

    27th March Xavier was meant to have a Echo done at Starship, after a long tiring wait, the Cardiologist decided that its better that he doesn't have the echo for fear that they will find something else that is wrong or things have progressed too quickly again. Now that doesnt sound very good, however I do understand where he is coming from. If they were to do the Echo and had found things are deteriorating, there is nothing else they can do for him cause its too soon after his last major which he is still recovering from. So to not do the echo is to not put worries and fear into us for something we have no control over at this point of his life. Physical examination shows he is stable but still High Risk and I got zapped back into reality that my Baby is still very very sick and can die anytime. Next Friday, we will be going back to Starship to stay for 48 hours while they give him his 12 weeks immunisation. Although if he does have a severe reaction to the immunisation, he can die and they wont be able to help him... it could also just be a very small reaction that they can help with in the hospital. After that, they will be increasing his betablockers and will be under intense observation. He looks so well... he cant be that sick right?? Zapped back into the reality of this is killing me. One day at a time, we will cherish all we have.

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