12 months ago the whole family enjoyed a Christmas steam train journey. It’s a fantastic trip organised by the Irish Train Preservation Society. Importantly at the end of the trip everyone gets to meet Santa. Last year Ben, our eldest son, had an absolute blast but in the middle of all of the excitement myself and Emma took turns holding Mattie as he shook with spasms. At the time he’d only just started his Sabril, was still bloated from the steroids he’d taken and suffering from conjunctivitis. The future felt very worrying. However, this year’s trip was very different!
Over the last couple of weeks Mattie has been weaned off Sabril, and is now medication and spasm free! At his last EEG on September 23rd there was absolutely no sign of hypsarrhythmia (the EEG signature associated with infantile spasms).
The routine of giving him his medication had become so ingrained in both of us that initially it felt very weird not to dig out the syringe and mix up his drug. A mental itch, like we’d forgotten something.
On the train this year both Emma and I were stretched trying to keep tracks on both boys. I think Ben believed he was on the Polar Express - we were just worried he would try to ski down the length of the train! - of course Mattie wanted to do everything his big brother was doing too! … Fingers in this, trying to eat that, stealing toys off his big brother…
Mattie had a blast with the on board carol singers. They walked the length of train bringing Christmas joy, and in between mouthfuls of chocolate and treats Mattie would try to join in, singing in only the way a nearly two year old can!
It was such a change from last year, and so much fun.
Mattie has come a long way this year and we are all delighted - he has achieved all of the things we were unsure he would; walking, talking and such a strong and funny wee personality. It is the best Christmas present we could have asked for.
We’re also hopeful that he will have escaped the worst of the Sabril side effects; vision loss. There is defiantly no sign he has any, but we won’t know until he’s much older but even if there is some the trade-off will have certainly been worth it. In the meantime the four of us have so much to look forward to.
Next year, Mattie will have one more check-up with neurology in April. Assuming he stays spasm and hypsarrhythmia free the hospital will discharge him. So far it’s looking good!
As you can probably tell from the older blog posts when Mattie was first diagnosed both Emma and I were shocked, a bit dazed, confused, and I think it’s fair to say a little scared. During the nights sitting beside Mattie in the hospital Emma and I would do what the neurology nurses recommended we didn’t; we checked the Internet.
“Whatever you do” said the nurses, “don’t google it. The Internet is full of all the bad cases, no one likes to write about the positive outcomes.” They warned.
Perhaps maybe, in April this blog will help counter balance the current weighting on the internet. I can only hope that in the future another parent, sitting beside their little one in the middle of the night, will stumble across this blog. I hope they know that they are not alone and the blog can help allay their worries a little.
Merry Christmas everyone.