I’ve just sent off a rather quick email to our genetic counsellor to find out if there is any new information- or indication- of what Luca might be diagnosed with. Once upon a time, this type of email would be so heavy with emotion for me. But now, it’s just in the back of my mind…

In the forefront of my mind, is watching my son grow. He may be super slow, but he is definitely growing. In one week, Luca turns 4. This time 3 years ago, I was using all my energy and thoughts to make sure Luca stayed alive for his 1st birthday. I question myself whether I should stop mentioning Luca will live a short life- because really, at this rate, he aint going anywhere. He is progressing- not regressing. The thought of Luca dying upsets me greatly, but the fear of him outliving me is gut wrenching. (Rest assured, that we had our wills done at the end of last year- to make sure Luca is well and truly looked after in the event something horrible happens).

So Luca turns 4 on the 21st February. This year is a lot low key than previous years. No fund raising or jumping castles or football game or face painting. Just immediate family around for a bbq. As Luca grows, I can finally start to see what he likes and doesn’t like. He doesn’t love a big party filled with people- but he does love his family who all adore him. He does love Elmo. He doesn’t love eggs and peanuts- because he’s severely allergic to them!

With turning 4, comes responsibility of learning and going to kinder. Two weeks ago Luca started kinder two days a week at the childcare he’s now attending. They love him there. The girls in his class literally line up to give him cuddles. Luca is VERY good at cuddles which is something I didn’t think I would ever get from him. (Still working on kisses). As from next week Luca will have his very own aide with him, for 15 hours a week, while he is in a kinder session.

The little man still doesn’t love his walker. But we still put him in it most days. The longest he has been in it has been 1 hour. There is a child at his childcare that has the same walker and can not wait to get himself in it to run about. Hopefully Luca will get to this stage too- but maybe not- WHO KNOWS! His physio is suggesting we look at another walker in future. His core is doing amazing things- so I know he will walk one day. Perhaps to give me a cuddle and kiss.

Luca’s overall health has been very good (typing on wood). I can’t remember the last time I walked into his bedroom fearing the worst. It must be a couple of years. I feel so incredibly lucky that Luca is in good health. When he is in good health- I am in good mental health. When your child is admitted to hospital- normalisation is gone. Your day to day routine- ruined. I salute all you mums and dads out there who are in and out of hospital with their little ones. Especially all those unique SWANs (Syndromes without a Name https://swanaus.org.au )

We’re STILL waiting to get an NDIS plan. It has not rolled out in our area yet. It keeps getting delayed. The only positive to this, is learning all the ins and outs from other parents who have gone through the NDIS process.

Well, in the time that I’ve written this post, our genetic counsellor has replied to my email and said that Luca’s results are currently in “analysis in progress” stage. The next step is to set up a meeting to discuss results. Perhaps I’ll have an update in a month or two. For now, I shall enjoy the slowwww progress my almost-4 year old is making.