This WORLD....FRIDAY 12.10pm
Well clearly there was reason behind James' horrible meltdowns the last few days. Last night was the start of the fever. Fever concerns me particularly in James..... Especially when there seems to be no other signs of sickness! James had almost a year of non stop FEVERS last year and we under went so many bloods and so many anti biotics. He had grommets inserted, adenoids removed. James' immunologist suspected he had a condition called periodical fever syndrome but all his genetic testing for that came back clear however there are so many conditions that can cause the fevers. James also underwent treatment for stomach parasites (super common in ASD children as their gut flora is compromised)... the fevers stopped so we never worked out whether it was inner ear infections, inflamed adenoids, parasites, food allergies ... who knows all I know now is to watch watch and watch him!
As I write this however James' nose is starting to run like a TAP! PHHEWWW just a cold hopefully.
Not too stressed about it just yet because we have follow up appointments this month with two of James' team. We see his ENT on Thursday and his Immunologist at the end of the month.
I am so glad we have a great team of specialists for James. I actually feel like we have built the best team EVER. Even though we have to travel no less than 2 hours each way to this amazing humans, its so worth it!!
Still don't have any news on the status of James' neocate script, however I have spoken with the immunologists receptionist and she has reminded him to get onto it. He is a VERY very busy man so I am sure he hasn't forgotten us his just swapped being an amazing IMMUNOLOGIST!
So some EXCITING NEWS....
James got into the early intervention program for 2017! I was so excited I cried!!!!
Deep down thats been a lot of my stress, I just want the best for James and I know he would benefit from this so much! They only except like 20 kids! We GOT IT! YAY!
So with the exciting news came a bit of juggling this morning, getting paperwork off to the right places, swapping pre school days and therapy etc for 2017.
Our 4 year old is going to be a BUSY BUSY boy! Two days of Pre school, two morning of early intervention program, speech therapy, sensory integration therapy and we can't go without soccer training! I don't leave anything to CHANCE... if you want something you have to fight for it!
So my amazing husband dropped me in a YUMMY coffee this morning as he was transitioning to the other clinic! Thanks THEO best hubby ever! I am feeling really good right about now (except for the NEOCATE issue). The cupboards are full of food (THANKS coles online delivery service), James' schedule for next year is almost set and the kids and I are in trackpants (home day) mode.
We are such a busy family... sometimes I look at my calendar and want to cry. But I need to learn to take one day at a time and not look too far ahead.
I am a ridiculously organized human and I have to remember that A) most people aren't and B) that life throws curve balls and I need to curve along with them. Finally I am super BLESSED that my husband works so damn hard so I can do all this for our family. I take my hat off to the single parents and dual full time working parents that can't dedicate this sort of time to their children that have additional needs.
Just going to keep plugging away.... because soon enough we will be on a cruise ship again cruising the SOUTH PACIFIC!! I remember my first ever cruise back in 2011. My in laws are frequent cruises and we were invited to go along with them on a cruise around NEW ZEALAND. I was skeptical ... but I had the most amazing time! They opened my eyes to CRUISING and now I am HOOKED! I have been on 3 cruises since... 2 this year infact with another very soon! James and Scarlett love it too. Actually our 2 week cruise back in February of this year James was the happiest I have ever seen him. No anxiety, so relaxed, eating, talking and just enjoying life. James and I would go on special 'mummy and son' adventures, Mummy would grab a glass of champagne and we would walk around the ship having conversations. SSSHHHH don't tell THEO lol .... I think he wondered how the alcohol bill got so racked up. Bring on champagne adventures and the ISLE OF PINES ... my very very favourite place!
Much love all,