Joshua's Story
Joshua with a beanie
I fell pregnant in 2004 and was expecting Joshua in January 2005. Being excited and looking forward to our first chilld, we were not expecting things to go the way they did. At 26 weeks , I was not feeling great and during a routine check-up, I was diagnosed as having pre-eclampsia, which resulted me having high blood pressure, organ failure and protein in my urine. This was extremely dangerous for both me and our unborn son; I was immediately admitted to hospital, where both me and the baby were monitored for 4 days. After numerous treatments and steroid injections, the Doctor had no other option but to do a caesarean section.
On 15 October 2004, Joshua was born. Our lives changed forever ….
As we went into the theatre, a song by Bette Midler was playing on the radio “God is Watching Us” and we knew that the song was playing especially for us.
Joshua (meaning “God saves” in Hebrew) was born, 14 weeks prem - at a mere 430 grams and from the time of his birth, he fought an incredible battle. We did not see Joshua at birth, but instead the pediatrician “ran” carrying Joshua to the Neonatal ICU unit, where he was put on life support immediately. Every gram he put on was great excitement and his survival was dependant on his development and growth.
Joshua spent 8 months in Neonatal ICU and three months on a ventilator. During this time, he had 5 operations, to name a few, an extremely complex heart operation, laser surgery on his eyes due to prematurity, Nissen Funduplication and inserting the Peg-Tube.
We held Joshua for the first time in January 2005 – 3 months after his actual birth! We travelled through from the East Rand to the Morningside Medi-Clinic twice a day for the entire 8 months of his stay in hospital. Life seemed to have ‘paused’ for us,we only concentrated on Joshua, it was very emotional and mentally exhausting. From day one, the rollercoaster ride began, one day he was doing well the next day he was battling.
Finally, after 8 long months, Joshua was discharged from hospital. The doctors and nurses held a special farewell party for Joshua when he left, which was extremely emotional for both of us. We were finally taking our son home!
Joshua has been in various therapies including, speech, physiotherapy and occupational therapy as part of early intervention. It was recommended to assist his development. Against all odds, Joshua started walking and talking at 2,5 years of age and his speech was delayed but he understood what we said.
Joshua will be 6 years on 15 October 2010. He attends a special needs pre-school and is doing very well. Joshua’s main problem now is his eating – he does not eat at all. We feed him milk "cocktail" formula through a gastro tube inserted directly into his stomach, for both nutrition and hydration.
After many years of investigating and research, there are no feeding clinics in South Africa, where there is an intensive feeding program. The Graz Children’s Hospital (www.notube.at) in Austria has a very good feeding program with a 92% success rate in getting children to eat.
Being in contact with the Professor of the Graz Children’s clinic and after submitting all doctors and therapist’s reports of Joshua, as well as a video of Joshua eating in order for them to establish whether he would be a suitable candidate for this programme, they have advised us, Joshua is a suitable candidate as they looked at cognitive skills and mechanical ability and all seems to be suitable for a positive outcome.
The professionals meet daily to assess the child’s progress. They have suggested that due to the severity of Joshua’s case, he would be an “in-patient” residing in the hospital for the entire time. I would need to accompany him for the duration of his stay, which is incorporated into the programme. We need to get him over so that he can learn how to eat. Joshua has never eaten a meal or never even had an ice-cream with his friends.
We have been in contact with other South African families, who have been through this programme and their children have successfully started eating solids and the gastro tube has been removed.
The older Joshua gets, the less chance there is of him learning to eat normally – without the feeding tube. Joshua’s feeding has a direct impact on his speech, social ability and overall development, which is why we really need to get Joshua into this feeding programme as soon as possible.
The problem comes with the cost of this programme. The estimated total cost of the five to six week stay is approximately R230 000,00 at the current rate of exchange.
We have started fund raising for this programme however and are desperate to get financial assistance as this is a substantial amount that needs to be raised.
Any financial contribution towards this objective would be greatly appreciated by us. No matter how small – all contributions make this goal a little closer.
To the very special people in our lives who continuously support us and who give us the encouragement and non-stop love. To our family and friends who opened their hearts at Joshua’s fund raising evening – THANK YOU. You have made it possible for Joshua to go and improve his life.
To the most incredible Doctors – Dr Enrico Maraschin and Dr Nicoletta Hay – you gave our son everything – your time, your determination, your constant support for us as first time parents in this traumatic situation, we will never forget. You “fought” just as hard as we did and know that through both your effort, our precious Joshua is with us today. To the nursing staff at Neo-Natal Unit at Morningside Medi-Clinic, who gave Joshua so much love took such special care of our son. Knowing that you special nurses were with Joshua when we were not there at night, made us feel a whole lot better.
In 5 years Joshua has given us so much to be thankful for, we look at ‘life’ differently and every day he progreses we are so grateful.
Even today – Joshua is a very strong-willed child, he still fights the “fight” and his strength and his constant determination to do things – keeps us more determined to help him improve his weaknesses.
We know the road is long and very difficult, just as you have achieved one goal or hurdle, the next challenge is waiting for us, but seeing him smile and calling us Mommy and Daddy, I know our “Little Hero” will keep surprising us in life. .
People often say – "how do you cope" or " how do you handle your situation" - I can only say that through constant FAITH, TRUST and NEVER GIVING UP has gotten us through these past five hard years and I know in my heart – Joshua is here for many reasons… xxx
.
On 15 October 2004, Joshua was born. Our lives changed forever ….
As we went into the theatre, a song by Bette Midler was playing on the radio “God is Watching Us” and we knew that the song was playing especially for us.
Joshua (meaning “God saves” in Hebrew) was born, 14 weeks prem - at a mere 430 grams and from the time of his birth, he fought an incredible battle. We did not see Joshua at birth, but instead the pediatrician “ran” carrying Joshua to the Neonatal ICU unit, where he was put on life support immediately. Every gram he put on was great excitement and his survival was dependant on his development and growth.
Joshua spent 8 months in Neonatal ICU and three months on a ventilator. During this time, he had 5 operations, to name a few, an extremely complex heart operation, laser surgery on his eyes due to prematurity, Nissen Funduplication and inserting the Peg-Tube.
We held Joshua for the first time in January 2005 – 3 months after his actual birth! We travelled through from the East Rand to the Morningside Medi-Clinic twice a day for the entire 8 months of his stay in hospital. Life seemed to have ‘paused’ for us,we only concentrated on Joshua, it was very emotional and mentally exhausting. From day one, the rollercoaster ride began, one day he was doing well the next day he was battling.
Finally, after 8 long months, Joshua was discharged from hospital. The doctors and nurses held a special farewell party for Joshua when he left, which was extremely emotional for both of us. We were finally taking our son home!
Joshua has been in various therapies including, speech, physiotherapy and occupational therapy as part of early intervention. It was recommended to assist his development. Against all odds, Joshua started walking and talking at 2,5 years of age and his speech was delayed but he understood what we said.
Joshua will be 6 years on 15 October 2010. He attends a special needs pre-school and is doing very well. Joshua’s main problem now is his eating – he does not eat at all. We feed him milk "cocktail" formula through a gastro tube inserted directly into his stomach, for both nutrition and hydration.
After many years of investigating and research, there are no feeding clinics in South Africa, where there is an intensive feeding program. The Graz Children’s Hospital (www.notube.at) in Austria has a very good feeding program with a 92% success rate in getting children to eat.
Being in contact with the Professor of the Graz Children’s clinic and after submitting all doctors and therapist’s reports of Joshua, as well as a video of Joshua eating in order for them to establish whether he would be a suitable candidate for this programme, they have advised us, Joshua is a suitable candidate as they looked at cognitive skills and mechanical ability and all seems to be suitable for a positive outcome.
The professionals meet daily to assess the child’s progress. They have suggested that due to the severity of Joshua’s case, he would be an “in-patient” residing in the hospital for the entire time. I would need to accompany him for the duration of his stay, which is incorporated into the programme. We need to get him over so that he can learn how to eat. Joshua has never eaten a meal or never even had an ice-cream with his friends.
We have been in contact with other South African families, who have been through this programme and their children have successfully started eating solids and the gastro tube has been removed.
The older Joshua gets, the less chance there is of him learning to eat normally – without the feeding tube. Joshua’s feeding has a direct impact on his speech, social ability and overall development, which is why we really need to get Joshua into this feeding programme as soon as possible.
The problem comes with the cost of this programme. The estimated total cost of the five to six week stay is approximately R230 000,00 at the current rate of exchange.
We have started fund raising for this programme however and are desperate to get financial assistance as this is a substantial amount that needs to be raised.
Any financial contribution towards this objective would be greatly appreciated by us. No matter how small – all contributions make this goal a little closer.
To the very special people in our lives who continuously support us and who give us the encouragement and non-stop love. To our family and friends who opened their hearts at Joshua’s fund raising evening – THANK YOU. You have made it possible for Joshua to go and improve his life.
To the most incredible Doctors – Dr Enrico Maraschin and Dr Nicoletta Hay – you gave our son everything – your time, your determination, your constant support for us as first time parents in this traumatic situation, we will never forget. You “fought” just as hard as we did and know that through both your effort, our precious Joshua is with us today. To the nursing staff at Neo-Natal Unit at Morningside Medi-Clinic, who gave Joshua so much love took such special care of our son. Knowing that you special nurses were with Joshua when we were not there at night, made us feel a whole lot better.
In 5 years Joshua has given us so much to be thankful for, we look at ‘life’ differently and every day he progreses we are so grateful.
Even today – Joshua is a very strong-willed child, he still fights the “fight” and his strength and his constant determination to do things – keeps us more determined to help him improve his weaknesses.
We know the road is long and very difficult, just as you have achieved one goal or hurdle, the next challenge is waiting for us, but seeing him smile and calling us Mommy and Daddy, I know our “Little Hero” will keep surprising us in life. .
People often say – "how do you cope" or " how do you handle your situation" - I can only say that through constant FAITH, TRUST and NEVER GIVING UP has gotten us through these past five hard years and I know in my heart – Joshua is here for many reasons… xxx
.