STARTING TO SHINE
About midway through 2013 we began to experience some break through changes with Jakob. Post surgery Jakob had experienced lots of discomfort, with continual dry retching which eventually developed into vomiting after his PEG feeds. He lost all interest in oral exploration, not wanting his dummy or to put toys in his mouth. This was extremely unusual for Jakob. He was miserable and really just wanted to be asleep most of the time. In a last effort attempt to improve general comfort, increase his quality of life and reduce his risk of aspiration we moved him onto a 'blenderised' food diet. Rather than giving him just the prescribed formula down his PEG we started to include whole foods that we had blended to a consistency that could be pushed through the PEG. This isn't medically supported in Australia and it involved a lot of research and planning. As parents we really had to advocate on behalf of Jakob, express our wishes for his care whilst continuing to work along side his medical team. Thankfully his team have been very good in supporting our wants for Jakob and to date we have had no issues with the 'blenderised' diet.
We noticed incredible changes once the diet was started, his vomiting ceased and his bowel movements became regular. The dry retching was gone and generally we had a much happier boy. This, combined with his respiratory function becoming more stable, allowed us to spend more time focusing on his therapies and development. Most importantly, Jakob had the energy to learn! In the second half of last year, Jakob made so much progress. He learned to commando crawl, his signs of hearing noises increased dramatically, he began to explore toys and really remember what their purpose was, he continued to develop his methods of non verbal communication and displaying affection, and signs that he was interested in eating began to reappear! With lots of therapy, and continued medical stability, we now have a little boy who is showing so many promising developmental changes. In the last few months, with much care and persistence, Jakob has learned to eat again safely (we still use PEG feeding as well and he isn't allowed to drink), he is almost sitting, he turns when you call his name, he responds to you saying "no", he is learning to make choices between the toys he wants to play with, is starting to recognise picture cards used for communication and is developing two-way interactions with adults. Medically he is making progress too, not needing to be on oxygen all the time and requiring less medications. Jakob still remains undiagnosed. All tests completed have come back as normal. At this point in time geneticists do not have anything else they can test for. Until genetic testing advances (there are some exciting steps being made) we have to be patient and accept that Jakob's future is full of unknowns for the time being.
We noticed incredible changes once the diet was started, his vomiting ceased and his bowel movements became regular. The dry retching was gone and generally we had a much happier boy. This, combined with his respiratory function becoming more stable, allowed us to spend more time focusing on his therapies and development. Most importantly, Jakob had the energy to learn! In the second half of last year, Jakob made so much progress. He learned to commando crawl, his signs of hearing noises increased dramatically, he began to explore toys and really remember what their purpose was, he continued to develop his methods of non verbal communication and displaying affection, and signs that he was interested in eating began to reappear! With lots of therapy, and continued medical stability, we now have a little boy who is showing so many promising developmental changes. In the last few months, with much care and persistence, Jakob has learned to eat again safely (we still use PEG feeding as well and he isn't allowed to drink), he is almost sitting, he turns when you call his name, he responds to you saying "no", he is learning to make choices between the toys he wants to play with, is starting to recognise picture cards used for communication and is developing two-way interactions with adults. Medically he is making progress too, not needing to be on oxygen all the time and requiring less medications. Jakob still remains undiagnosed. All tests completed have come back as normal. At this point in time geneticists do not have anything else they can test for. Until genetic testing advances (there are some exciting steps being made) we have to be patient and accept that Jakob's future is full of unknowns for the time being.
