Walker

So much has happened in the last few months, I struggle to find the right place to start. The biggest social change for Luca has been moving him from one childcare centre, to another. It saddens me that his carers at previous childcare were so upset to see the back of him- he loved their cuddles. His new carers are so very happy to have this little boy/sloth/puppy dog in their lives.

One of the big things about Luca’s new childcare, is that there is lots of room for him to move around in his walker….. whats that? Did I say… WALKER?! Yes, I did. Thanks to his amazing physio, and Scope, Luca now has a walker to help him try and walk. It may only be 15-30 mins a day… but my little man, is up on his feet and happy to be upright.

Not long after receiving a walker, Luca was fitted with his “Second skin” suit. Think of it like a cross between a corset and a wet suit. It has boning in it and zips up in 5 places, to ensure his core is pulled in and working as it should. It changes his posture, to how it should be. This is like “wearable physio therapy”.

Last week, our neurologist, who specialises in seizures, dumped Luca.  That sounds a bit harsh, but really- it’s great. Luca is no longer having seizures- therefore, no longer needs to see the neurologist specialising in seizures. It’s a shame, because I loved Dr Freeman- and we’d been seeing him for some time. However, the time had come, where we had to part! One less doctor!

Another hospital appointment we had last week (of course not on the same day) was for the orthopaedic surgeon. They had to assess Luca’s hips to see if they need surgery to correct them (as they were 30% + out in the left and right hip). They took an X-ray and advised that the hips are still a bit out, but walking should help correct them. For now HE DOES NOT NEED SURGERY- but they will assess again in 12 months.

In between all these specialist appointments, Luca and I squeezed in our first SWAN playgroup. I’ve mentioned on SWAN before. SWAN are: Syndromes Without A Name. They are amazing and our little tribe. Our very own support group- for those of us whose children’s issues can not be labelled or pigeon holed.

We are still waiting for that elusive diagnosis. DNA samples taken and sent off at the start of the year have not come back as yet… but, we’re just living life. Theres so many positives that are happening with Luca. It would be silly to dwell on a label/diagnosis…. but the question is ALWAYS in the back of my mind. He is alive, and from what I can see, not going anywhere, anytime soon. He’s pretty nice to me too.