It’s been a while and *spoiler alert*- Luca is still undiagnosed. While he does not have any diagnosis or info on his mysterious/rare condition, we were able to have his hips, eyes, heart and brain waves tested.

So, first up, we had his hips Xrayed. They need to be X-rayed every year, to ensure his hip sockets are in line. To ensure his hip and leg bones keep working we encourage Luca to be standing or walking or even crawling so fast (like he does) to keep that movement happening. The orthopaedic surgeon took a look at his hip Xray and was very emotional. She said that when she sees kids like Luca, she can only hope to get such a positive outcome like Luca’s. His hips are IMPROVING. They are visibly improving each year. Getting better. What does this mean? He does NOT need surgery. The possibility of him being able to walk independently is very much a reality. He LOVES to be upright. My dream of being able to walk down the street with his little hand in mine, walking along side me makes my heart swell with so much love. This is HUGE. As Luca slowly starts to get heavier (he is only 20.5kg at almost 8 years of age), him being able to walk independently would change so many lives- especially his.

Next up was getting his eyes tested. This is a tricky and tedious test for Luca. They put drops in his eyes to dilate the pupils. Then they hold up certain boards and look at his eye reactions with special equipment. It blows my mind how they can work out what Luca can and can’t see. His eyes have not got much worse in the last 12 months. He is +3 or +4 -long sited, and they don’t think it would benefit him/his life by adding glasses to the mix. It may frustrate him. So for now, no glasses or intervention needed.

We also had his routine heart checked out. That was fairly simple and seemed to be happily ticking along as it should be. Last time he was in hospital, he had a heart murmur- but that seems to only be if/when he is ill.

I had noticed over time that Luca was doing more and more facial expressions and also laughing randomly at nothing. At first, I would think he was “seeing dead people” and laughing with ghosts… then I Googled and saw that there is such thing as a laughing seizure. So, I asked Luca’s beloved paediatrician if we can come in to get an EEG- Brain wave scan to show any seizure activity. Luca was discharged from the neurology department years ago… but because I missed his absent seizures in the past, I worried I was missing them now- or he was having different seizures. The morning of the EEG, I got Luca up at 4:30am so he would sleep for his EEG at 10:30am. He did not sleep. He did come close- but as always- fought the sleep. He did end up doing the weird facial expressions and laughter that I worried about- so at least we could tell if they were seizures or not. Weeks later we go the results, that he was not having “textbook seizures” or that they were clear seizures- but of course, his brain being built differently meant that the brain waves were “abnormal” but not something to worry about. If I was still worried we could be admitted for 3 days for a seizure/sleep test. For now, I am not worried.

Luca also went and had allergy testing for his Egg allergy. And after a few hours, we can now safely give him cooked egg in his meals. He is still anaphylactic to tree nuts.

So, thats our most recent medical update. Still in limbo land, but the boy is relatively healthy. He did manage to get Covid again last year- but showed no real symptoms compared to his first bout. We’ve been to RCH Emergency department with suspected pancreatitis, but both times got to go home because it was NOT pancreatitis but a common bug or something else.

On the home front, we added a kitten to the family. We could not add a dog to our family, of the simple reason that Luca crawls everywhere and dogs tend to either jump on him or lick his face. If Luca walks independently, or has the need, a therapy dog could be a good inclusion- but for now, we have a kitten that is VERY interested in Luca, but Luca shows NO interest in AT ALL. It is very funny how he completely ignores the kitty as she walks on past.