With Jason being healthier this year we have seen some amazing progress with his speech, his development and his eating. With health he has been able to attend school more often and also participate in his therapy whereas the years before we lost out on huge amounts of therapy. His school has been amazing for him. We prayed long and hard for a school for Jason, for him to be able to attend close to home and also for a school that is able to attend to his individual needs. Our prayers were answered when Bloom opened in January this year. Jason has taken off in leaps and bounds in all areas. His speech, his sensory problems, his understanding, his overall communication and his eating. I say eating with a HUGE smile on my face. Again I have learnt the right therapy and the right therapists and the right team makes a HUGE difference. With Jason's school he has been getting his speech and OT twice a week and because it was all done under one roof, the therapists have been able to work together towards one goal for Jason instead of us running from this therapy to that therapy. We also started feeding therapy with our amazing speech therapist twice a week. It has been costly but worth every cent at the end of the day. Sarah has worked intensely with Jason with desensitizing his mouth, rubbing his gums, his teeth, his tongue. This desensitizing has had an amazing effect on his whole willingness to eat. and tasting things. This year is the first time in 6 years that he has eaten. I say 6 years because he got his feeding tube when he was a year and 3 months. We started off with custards and yoghurts and we have progressed onto some soft fruits like bananas and kiwi. He has allowed me to feed him cottage pie, stews, mash and gravy and soups. He has even shown a lot of interest in feeding himself where every now and then we catch him snacking on something on the sly like popcorn or when we order pizza he sits and tries the pizza on his own. Stealing some grapes or an apple out the fridge. Man it's amazing and Bruce and I can't get enough of watching Jason eating.
For those of you in a similar situation as us with your kiddies that have feeding tubes and don't eat. My advice is NEVER give up, they too, one day will eat just like Jason is starting now. It has taken us 6 years as I said earlier but finally we are seeing progress. All our hard work is paying off. A determined attitude will pay off one day. Yes they are very stubborn and they would be because they haven't eaten in years. For those of you that don't understand and think it's simple - starve the child and they will eat. Unfortunately you are very mistaken and this isn't the case for our children. Who would turn down a chocolate, when you are hungry, you will eat - nope it doesn't happen like that. Our children have feeding tubes for a reason. Not because we wanted them and not because we stopped feeding them. It's because they all had medical reasons for getting the feeding tube in the first place and unfortunately the misconception of "stop feeding them and they will eat" is not the case. They will literally starve themselves if it is not done in a controlled environment under medical supervision and with the right team of experts. It takes a team and it takes time and a whole lot of money to help these kids. Unfortunately tube feeding isn't something that a lot of people know about. It isn't something that is what's the word "out in the open". Before we had Jason we didn't even know it existed. Hopefully with time and with experience more and more people will be educated on feeding difficulties, more therapists will come forth and specialize in helping these kids. I am a huge advocate for education and trying to get people to understand why these kids don't eat - hence a reason why I continued with this blog. To educate the general public that these problems exist, how they should handle the situation if they come across a child with a feeding difficulty and also to blog about our experience with Jason to help those in a similar situation. We are blessed to be where we are today. It has taken a lot of time and a lot of patience but we are getting there.
As usual I have rambled on and on and just written down what is going on in my head. I guess that's what happens when I wait three weeks to do my next update!!
We have about 20 minutes to go here. It is 10pm and I am itching to get home, mix medicines and milk for Jason and climb into my warm bed. Work tomorrow - yuk yuk. I love my job but it's days like these when I could do with another day off. Well not too long and we will be on leave for a little bit - looking forward to a lovely family holiday down the south coast with granny and grandpa.