Still here…

It has been almost a year since I have written a post on this page, and in a way I want to apologise but the reality is that it just didn’t feel right to continue the blog in the same tone as before.

When I wrote the last post in January 2017, I had nothing but hope and faith in the future.  I was 2 months pregnant with our third baby, a beautiful little girl who was born in August and is truly a blessing.  She has been a wonderful focus for us all, and both Luke and his older sister are madly deeply in love with her.  It has been an adjustment for us all going back to having a little baby in the house with an 8 year age gap between Luke and the new arrival, but somehow it just works and there isn’t a more entertained and doted on baby in the whole world!

As for Luke’s epilepsy, unfortunately things there haven’t been as plain sailing as I had hoped.  He was seizure free for a whole 9 months, and if I’m honest I really thought Luke was going to be one of the lucky ones, his seizures would remain under control and we would soon be in a position to reduce his 3 medications, perhaps down to just one eventually and the condition would prove to be only a very minor inconvenience in his otherwise perfectly normal childhood and subsequent adult life.  We had a Consultant Clinic appointment in July, and as if by some cruel twist of faith the night before Luke told me he had experienced a strange twitch in his eye, I discounted it as merely a jumping nerve in his eye and told him not to worry about it.

The next day at his clinic appointment, his consultant did indeed suggest reducing Luke’s meds as he was doing so well, and to try to wean off Frisium.  We reduced the nightly dose by 5mg and over the next week the eye twitching returned, and I soon realised it was not a nerve but indeed seizure activity.  Luke describes it as feeling like stone, really heavy and he can talk throughout the short seizure but his speech is a little slowed and he holds his arms out straight, or stiff down by his sides and his right eye visibly twitches.  He also says that “they are trying to make him laugh”, which was always part of his initial seizures, described as gelastic.

So there we were, due a baby in 6 weeks and I just felt like everything was up in the air again, what would I do if his seizures got out of control and he ended up being admitted; I knew it would kill me not to be with him, and also as I had two previous C-Sections I knew I was facing into a third and would be in hospital myself for 5 nights, what if something happened to him when I wasn’t there?.  I am generally a very controlled and capable person, but I just felt like there was so much outside of my control that it was overwhelming, and very stressful – I had plenty of sleepless nights (great practise for the new baby!!).

As a result of this new seizure activity, described by his Neurology team after reviewing a video as  Simple-Partial, we were left with no choice but to revert back to his original dose of Frisium and have increased his Lamictal over the past few months, to a level which for the moment is holding them at bay, and he is currently one month seizure free. It just feels like they are never far away, hiding for a little while and then reappearing when you least expect it.

Luke continued to meet with the Neuro Psychologist in Temple Street over the first half of 2017, she met him around six times and completed various assessments with him in order to assess to what extent the Epilepsy was affecting his functionality (memory, attention, language etc.)  We are still waiting on the full report from Dr Cathy Madigan, but having reviewed her findings in person it has enabled us to put supports in place at his school, targeting the specific areas which he has some difficulty with.  I don’t feel it is appropriate to disclose these findings publicly, but overall academically he is a superstar, even with everything he has been through in the past two years he continues to be towards the top of his class in all areas, he is a very bright and talented little boy.

So there you have it, we continue to live under the cloud of epilepsy, Luke is living with the side effects of the condition, the part of his brain which for whatever reason is wired differently to most people, we are likely to never know why or how.  And on top of this he also has to manage the side effects of three Anti-Epileptic medications, the mood altering, behavioural challenging and exhausting effects which some days defeat us all.  We as a family are living with this condition, through Luke and with him, but that is life, we all have challenges and hard times but we still have to get up and find a way to go with it and move on, everything is temporary and the hard days will only highlight how great the good days are.

Below is a picture from a great day, of Luke completing his first ever Cross-Country race two weeks ago.  He went into school the next day and showed his teacher his medal and told her ‘as much as he wanted to stop he didn’t because everyone was cheering for him and shouting his name at the finish line, and so he kept going!’ I think that tells me everything I need to know about his strength of character and a great lesson to us all that as much as you want to just give up, the rewards of pushing on through are just so rewarding; I was and am, so so proud of my boy.  R x



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