It is something we really need to try and overcome and Jason's speech therapist is willing to do this. We are seeing great progress with his eating and sensory problems but if we only rely on his therapy at school this is going to take forever. We need to get aggressive with feeding and I believe his speech therapist is the perfect person for the job. No Tube in Austria always said we need an outsider to come in and take over his feeding therapy. I think we have finally found the perfect person.
In the past two weeks we have had two feeding sessions in the afternoon which has made huge progress. Jason's therapist is confident we can make better progress with daily therapy. Each 45 minute session costs R320 and this will be daily. How long it will take who knows but if we don't try this we will continue to move forward slowly. We need progress now, we need this feeding tube gone!
It's a tough decision to make as we rely on the funds in the trust to pay for his doctors bills, medicine, therapy and nutritional feeds BUT if we can get this right and he is eating maybe those bills will reduce and he will be healthier and we can stop all expensive formulas and pump set that is keeping him alive.
Time to throw away this feeding tube!!!
The work that Jason's speech therapist is doing is highlighted below :-
The aim of working inside his mouth is to ‘desensitise’ it. This means making it used to different sensations in terms of touch as well as different textures. The massage of his gums allows him to tolerate pressure on them which he has lacked all his life as he has never been able to bite or chew food. With the use of various techniques and temperatures the aim is to remove his ‘gag’ reflex and ‘bite’ so he can open his mouth, keep food inside it and swallow it.
Jason is extremely defensive and it has taken a long time to be able to work inside his mouth, and now that we are, it allows us to do so much more for him and his oral sensory needs.
I believe in my heart, my motherly instinct tells me that this is what Jason needs otherwise I wouldn't consider it. We have had HUGE progress the past year but progress is going slow and we need to get moving!!