We didn't make the neurologist appointment unfortunately something came up on his side so we are waiting for a new appointment which I am hoping will be soon. Its terrible when you wait 6 days for an appointment only to be told that we can't go on the day. Wasn't his fault but very frustrating. There is so much that will be discussed at that meeting, one of the main issues is the genetic tests and I am very interested to see what the neuro has to say about that.
All of a sudden Jason has taken off with his copying and talking. I walked around the farm the other day with Jason and gave him a golf ball and kept saying "ball" repeating "ball" "ball" "ball" and not long he was saying it. Also the other day we said "fire" and he too said "fire". Copying of words is happening so nicely. He is also copying a lot of actions and dancing. Jeanette says he LOVES dancing at school. Must take after his mommy! You must see him doing the actions to "The Wheels on the Bus" - too cute.
Therapy wise I was waiting for the neurologist appointment before I decide which therapists we are going to go with. But I am rather going to go ahead and make some decisions, I can't wait too long. It's a HUGE decision to make choosing which therapists will be responsible for helping your child.
I have started following Rachel's blog about her son Arthur who has just arrived in Graz and today is day 1 of treatment. Gosh it brings back so many memories. You know despite all the hardships we went through there, I would go back tomorrow! I loved every day we were in Graz, knowing we were getting the care and attention that we needed for our son. We could JUST focus on Jason. Yes he got Rotavirus which was very unfortunate but we learnt so much from that experience, all a part of "Jason's Journey" a very necessary step to Jason's recovery.
I have received the psychologists report. The report was a HUGE reality check. I knew Jason was behind with everything and everthing that was said was totally true but seeing it all down on paper makes me realize how much work we have to do still. Basically Jason is at different stages in his development, all behind obviously. His weakest area is his speech and speech affects the other areas of his development. Overall his mental age is half his age. So yes we have a LOT of hard work to do.
The great thing about having the psychologist review now is we know what direction we are headed in, where we are going and who we need to see. It is very tiring having a sick special needs child. A lot of you reading this website know exactly what I am talking about because you also go through so many trials with your special children. Jason has many issues besides not eating, not eating is only one of them but that is ok, we will tackle each issue and get there. Jason will eat one day, he will, I know that. Eating for these children is so abnormal, I mean in Jason's case he hasn't eaten since September 2008. Another thing I have learnt is when these tube fed kids do start eating, they don't just eat, they are extremely fussy, will only eat and drink certain things and every day is a struggle to keep them hydrated and eating enough to sustain themselves. These kids haven't eaten for years so eating is totally new for them and for their parents, a whole lifestyle change. They can no longer rely on the feeding tube and I am really grateful that I am able to follow their progress and learn from their experiences.
We still have a very long way to go but if I have learnt anything in life with Jason, it's patience! And everything will happen in Jason's time not ours. I have learnt to take things one day at a time, not to worry about what happened yesterday and not to stress about tomorrow but to focus on today and where we are today! I look back at how far we have come with our little man. It's a miracle that our little boy is alive today and I thank the good man upstairs for looking after him and helping us to get through all the obsticles that we have had.