This week in particular has been a very emotional week for me. The 16th September in my eyes is a very important day for me for two reasons :-
First of all on the 16th September 2008 Jason had his Nissan Fundoplication and his feeding tube placed. This was obviously a very trying time for Bruce and myself. Before the operation we faced a huge decision of whether to go ahead with the operation or not. At the end of the day we didn't have a choice really. We were told that basically Jason had to have the Nissan to repair the hernia and the valve to close his stomach off around his oesophagus to stop him refluxing. If we didn't go ahead with the operation we could risk losing him to pnemonia. Jason was getting bronchitus and pnemonia all the time. He had silent reflux where his milk was coming out his stomach, refluxing up his oesophagus, burning him and going back down again. At the time of the operation Jason was a year and 3 months old and only weighed 5.3kgs. After the operation we were told by the surgeon that he cannot believe that Jason did not scream in pain because his oesophagus was SO raw from the acid burning him (remember Jason has an extremely strong pain threshold so we had NO idea he was refluxing so bad). Also we were told that Jason was malnourished and failure to thrive because he wasn't getting enough nourishment. His kidneys had clear white stripes which were visiable on the photos the surgeon took - a clear sign of being malnourished.
So really the operation and the feeding tube saved Jason's life and has kept him alive. It's amazing how a piece of silicon plastic in the stomach can save a life. That is the reality of the situation. After the operation we were able to feed Jason without him turning away at his bottles and food.
The second reason is on the 16th September 2010. We left for Austria!! Yes it has been a year already. I can't believe how this year has flown. Quite ironic that to the day two years later we left the country to try and get rid of the very tube that was placed two years earlier. The tube that saved Jason's life. You all know how the trip went. It was one of the hardest things Bruce and myself have had to do BUT not for one minute do we regret it. Unfortunately the circumstances didn't allow for us to come home tube free. Our little man was so sick and so weak and those 5 weeks we spent in Austria were very trying. We met the most amazing people, amazing doctors and therapists and the most amazing friends too. We learnt so much and we came back with the hugest amount of knowledge about tube weaning and about Jason. We learnt that there was nothing "medically" stopping him from eating. Very importantly it took a trip to Austria to learn that Jason had low immunoglobulin levels and this was the reason for him getting sick ALL the time. I remember EVERY day so clearly. This week has been kind of a reflection week for me. I remember leaving for Austria, the emotions and excitement we felt. Arriving at our beautiful accommodation. Moving into the hospital, meeting the other parents and children. Starting his therapies and play picnics seeing our little boy putting food in his mouth one thing after the other. Something that he didn't do at home. Then obviously on day 3 into the program Jason started gagging, vomiting and then the diarrhoea and then we learnt that he had rotavirus and had to be isolated from the whole group. The very reason we went to Austria to tube wean we couldn't do and that was totally heart breaking and soul destroying. BUT we NEVER gave up and neither did Jason. The doctors and therapists were absolutely fantastic and did everything in their power to do every thing they could do to help us under the circumstances. Gosh it was a hard trip but at the same time we have so many fond memories and so much knowledge from it.
Anyway here we are 3 years later and we still have the feeding tube. We have been through so much with Jason but most importantly our little man has come through so much. He is a survivor, he is the most amazing little boy. Through everything he has been through, through all the pain he has had to endure, through all the hospital stays with prodding and poking. Our little boy faces everything and always comes out smiling. He is such a lesson to us. He shows us that no matter what you go through in life, it aint that bad and you can overcome anything!! Always keep positive no matter what comes your way and keep smiling :) As my brother said to me all paths lead to our father in heaven and everything is under HIS control. I truely believe that. My motto in life is "Everything in life happens for a reason".
I am just so proud of Jason. I am proud to see the changes and the progress in him. He has come so far against ALL odds. All my family and friends that see him cannot believe the changes in him. He has grown into a little boy now. He interacts beautifully with other children even though he doesn't speak their language yet. He tries his outmost best to eat even though he knows that it usually ends up with him choking - still he tries and doesn't give up. I know one day whether it's a few months or a year or two, Jason WILL eat. It's just a matter of time.
So to those of you going through your own challenges. Whether it's with your children with illness, disabilities, special needs or whether it's your own health or challenges in life. Remember NOTHING is impossible. Have the right attitude. Never give up. Keep trying and look to our father in heaven for guidance. He is there, he is watching over us all and he knows what struggles and trials you are going through. He knows that your children are suffering, he knows that you are suffering. He knows that you are going through a difficult time BUT he wants you to keep the faith and to remember that he is with you every step of the way!!!
First of all on the 16th September 2008 Jason had his Nissan Fundoplication and his feeding tube placed. This was obviously a very trying time for Bruce and myself. Before the operation we faced a huge decision of whether to go ahead with the operation or not. At the end of the day we didn't have a choice really. We were told that basically Jason had to have the Nissan to repair the hernia and the valve to close his stomach off around his oesophagus to stop him refluxing. If we didn't go ahead with the operation we could risk losing him to pnemonia. Jason was getting bronchitus and pnemonia all the time. He had silent reflux where his milk was coming out his stomach, refluxing up his oesophagus, burning him and going back down again. At the time of the operation Jason was a year and 3 months old and only weighed 5.3kgs. After the operation we were told by the surgeon that he cannot believe that Jason did not scream in pain because his oesophagus was SO raw from the acid burning him (remember Jason has an extremely strong pain threshold so we had NO idea he was refluxing so bad). Also we were told that Jason was malnourished and failure to thrive because he wasn't getting enough nourishment. His kidneys had clear white stripes which were visiable on the photos the surgeon took - a clear sign of being malnourished.
So really the operation and the feeding tube saved Jason's life and has kept him alive. It's amazing how a piece of silicon plastic in the stomach can save a life. That is the reality of the situation. After the operation we were able to feed Jason without him turning away at his bottles and food.
The second reason is on the 16th September 2010. We left for Austria!! Yes it has been a year already. I can't believe how this year has flown. Quite ironic that to the day two years later we left the country to try and get rid of the very tube that was placed two years earlier. The tube that saved Jason's life. You all know how the trip went. It was one of the hardest things Bruce and myself have had to do BUT not for one minute do we regret it. Unfortunately the circumstances didn't allow for us to come home tube free. Our little man was so sick and so weak and those 5 weeks we spent in Austria were very trying. We met the most amazing people, amazing doctors and therapists and the most amazing friends too. We learnt so much and we came back with the hugest amount of knowledge about tube weaning and about Jason. We learnt that there was nothing "medically" stopping him from eating. Very importantly it took a trip to Austria to learn that Jason had low immunoglobulin levels and this was the reason for him getting sick ALL the time. I remember EVERY day so clearly. This week has been kind of a reflection week for me. I remember leaving for Austria, the emotions and excitement we felt. Arriving at our beautiful accommodation. Moving into the hospital, meeting the other parents and children. Starting his therapies and play picnics seeing our little boy putting food in his mouth one thing after the other. Something that he didn't do at home. Then obviously on day 3 into the program Jason started gagging, vomiting and then the diarrhoea and then we learnt that he had rotavirus and had to be isolated from the whole group. The very reason we went to Austria to tube wean we couldn't do and that was totally heart breaking and soul destroying. BUT we NEVER gave up and neither did Jason. The doctors and therapists were absolutely fantastic and did everything in their power to do every thing they could do to help us under the circumstances. Gosh it was a hard trip but at the same time we have so many fond memories and so much knowledge from it.
Anyway here we are 3 years later and we still have the feeding tube. We have been through so much with Jason but most importantly our little man has come through so much. He is a survivor, he is the most amazing little boy. Through everything he has been through, through all the pain he has had to endure, through all the hospital stays with prodding and poking. Our little boy faces everything and always comes out smiling. He is such a lesson to us. He shows us that no matter what you go through in life, it aint that bad and you can overcome anything!! Always keep positive no matter what comes your way and keep smiling :) As my brother said to me all paths lead to our father in heaven and everything is under HIS control. I truely believe that. My motto in life is "Everything in life happens for a reason".
I am just so proud of Jason. I am proud to see the changes and the progress in him. He has come so far against ALL odds. All my family and friends that see him cannot believe the changes in him. He has grown into a little boy now. He interacts beautifully with other children even though he doesn't speak their language yet. He tries his outmost best to eat even though he knows that it usually ends up with him choking - still he tries and doesn't give up. I know one day whether it's a few months or a year or two, Jason WILL eat. It's just a matter of time.
So to those of you going through your own challenges. Whether it's with your children with illness, disabilities, special needs or whether it's your own health or challenges in life. Remember NOTHING is impossible. Have the right attitude. Never give up. Keep trying and look to our father in heaven for guidance. He is there, he is watching over us all and he knows what struggles and trials you are going through. He knows that your children are suffering, he knows that you are suffering. He knows that you are going through a difficult time BUT he wants you to keep the faith and to remember that he is with you every step of the way!!!