Well I haven't been over here for a while....
So we are pretty manic at the moment, like every other family in the lead up to Christmas.
We have had some big things happen this past week.
Last week I had my first meeting with the NDIS.
This literally strained my soul.
I did so much prep work, collating and pre planning for this meeting.
I was anxious and scared of the process.
I was anxious and scared because I had heard so much negativity regarding the transition to the NDIS through parents first hand experiences.
I am happy to say that my experience was pleasant.
I had a planner who listened to my concerns and took all my notes ( pages of notes), reports and summaries with him to continue building the plan for my child.
I got so many messages from people saying, 'why are you stressing' and almost telling me I was stupid for making such a big deal out of the NDIS.
The comments kinda pissed me off ya know.... why?
Because I am a mother who goes above and beyond for her child.
His development, integration and success is in my hands.
I am his voice and I want him to be heard.
I want him to be supported in every aspect of his life and I am prepared to fight for it.
So now we wait the next step in the NDIS process.
Note: those that do not live in Australia, we are currently going through a disability funding shift.
Boy did I feel a sense of relief when that meeting was over!
Now let's reflect on the next big thing that has happened this week.
Yesterday I had the privilege of attending a conference.
Pans/Pandas conference with three amazing speakers.
Dr S Swedo, founding Research paediatrician of the syndrome pans/ Pandas ( from America).
Professor R Dale, researching neurologist in tic disorders and pans/Pandas and my children's neurologist.
And some other lady who is a teacher in special education, sorry I may have zoned out here EEKKK.... she was speaking a lot about what I already know. Every one has a little nap in conferences right? This was my nap time.
The day was AMAZING.
I was in a room full of parents of pans kids and medical professionals with interest in the syndrome.
I learnt a lot.
But not as much as I will learn on Thursday when I take my children to a very special appointment..... stay tuned!!!!
So the next few weeks are very intense in the Mahanidis house hold.
We have a lot of specialist appointments on top of regular school and therapies and the add ins of Christmas festivities
Big appointment this week for James and Scarlett.
Next week both kiddies have their paediatrician catch up appointment, this appointment is always so draining because I have to give insight into how we have gone in the last 6 months with all of the therapists and specialists.
We discuss treatments from all specialists and he gives guidance on whether we are going A ok or need to explore another avenue for the kids.
The following week James baby has his first feeding therapy appointment.
I am going to be optimistic about this one.
James did not eat food.
He has severe food refusal from fear of food.
Thanks FPIES for that one.
James has seen feeding therapists in the past who won't even touch his issues.
We have even seen the feeding team at Westmead Children's Hospital who told me I am doing everything right at home and that no one else could offer me any more support.
But now it's time.
We have finally been slotted in with the guru in NSW and have had a whole year of speech therapy and OT to help aid the other issues associated with eating food.
Fingers crossed we can get a plan and make some gains because I have constant nightmares of having a 16 year old boy still prescription formula fed!!!
Then we will land ourselves into December which is Scar babies time to shine.
Scarlett's has her first ever dance concert.
So we have rehearsals and shows which mummy is a tad pumped for!
James and Scarlett also have the check in appointment with their integrative biomed doctor. This is the lady who heals the gut. We will be reporting on the latest additions she made which was acidity reducing meds and also E. coli supplements.
Sometimes I wonder how the hell I get through everything we have on our plate.
But I just take it day by day.
Everybody freaks out when they see my calendar on my fridge.
It's funny you know because I don't think I would want it any other way.
Everything I do is for my babies and I surely do whatever it takes.
I am sorry this post is so long but thank you for reading.
Thank you for our support always.
We definitely have a great online community that supports us.