Nope? Well, me neither! In fact, I think I'm moving further and further AWAY from THAT point...like it occasionally flits a little closer to taunt me and I shakily breathe a 'we've-got-this' sigh of relief and then next thing it hightails away from me and I'm left reeling in a whirlwind aftermath of W.T.F(lip)'s!
It's been a rather busy 3 months...magazine articles, 1 year schooliversary, meds fail, testis hunt, die-hard viral URTI's, flourishing receptive communication and and...
Sam's story is featured this month in a very popular local magazine, although the shoot for the article was done in July already.
The actual shoot was loads of fun, complete with hair and make-up and Sam, who just loves the camera, did really well. The only downside of the morning was Sam's ever-increasing fear of being in a car, as we travelled 45mins to the venue...and then back again. It's something you really have to see to completely comprehend but because holding my phone while Sam is frantically grasping at my neck/hair/face/clothes/arms as if I am about to ease him over the edge of Nanga Parbat's Rupal Face as opposed to over the annoying arm of his booster seat, catching it on video has proven a little tricky. So you will just have to take my word that the lil flappy dude does not do great with cars...eight years on, sometimes up to six or even eight into's and out of's a day and yet each time I open that car door, panic hits him like it's the very first time.
It's this very irrational anxiety which led us to probably one of our worst medication epic fails. With Sam's anxiety levels really affecting his quality of life and with him having been on his current anxiety meds since he was 2 years old, we decided to replace his Faverin with Serdep which, on paper, looked like a better fit (Sam's absent seizures have also increased and the risk of seizures is statistically higher with Faverin), plus the longterm use of the Faverin might have made Sam's system too accustomed to the Fluvoxamine so a change in med seemed like a good idea...until we did it. Said system was not as impressed with the change as we'd hoped and Sam's days became just one emotional turmoil after the other. At the same time, an EEG confirmed that we needed to increase Sam's epilepsy meds AND, for good measure, Sam suddenly sprouted some very adult-looking hair in his nether region indicating that a certain little testis we had presumed lost (and inactive) to the flappy dude's innards was, in fact, not all that inactive after all #gasp!!!
I make light of the situation, but I can assure you that almost every morning for two months I stood clinging to the gate of Sam's school in very-near despair, listening to the amazing team of ladies at Edu-Play Early Learning Centre reassure me that they would cope with Sam's completely over-the-top emotional state and accommodate what behaviours they needed to at that time...and those reassurances and encouragements were, without a doubt, both mine and Sam's saving grace!
I say "were" because Sam is once again back to his version of a "happy place" and our days are no longer filled with unpredictable bouts of emotion, aggression and insanely-pitched screeching. We switched Sam back to the Faverin after 2 weeks of giving the Serdep fair chance and Sam's system has also now adjusted to the increased dose of Epilum. That darn little testis though...that's a whole other issue (and venting-full post on it's own), but in short, we have to try bring it down again which is not great news as, above spinal cord surgery and thumb reconstruction surgery, Sam's testicle surgeries (this will be the third) always seem to knock him the most. The fact that the little bugger has been hiding out in the inguinal canal for a good 4 or 5 years already means that we aren't doing any more considerable damage by waiting till the beginning of December to do the surgery so that a) Sam has at least had a couple of months to enjoy some (relative) calm before we slap him with another round of trauma and b) he gets to enjoy his Christmas concert and the festivities of the end of the school year.
Thankfully, through all the issues
over the past few months, Sam's
love for school has not been
affected. The fact that some of his
favourite people are there sure
helps. It's crazy to believe that on
18 July he'd been at Edu-Play for
a full year already!
To close off, there has been a sudden flourish of receptive communication on Sam's part. His receptive language has always been good and we've even noticed him picking up on some Afrikaans words...but more than once now he has reacted to something that was said in a conversation in his presence, but not directed at him. It's been really quite amusing, with a flappy conqueror's twist of course, eg...a few nights ago Sam whacked his head a startling shot on the wooden headboard. Sam has an incredibly high pain tolerance, but still feels the initial pain completely, in other words, he feels the pain...reacts, but then has so (almost sadly) become accustomed to pain that he will continue functioning despite (I believe this is very much an RTS thing). Anyway, he knocked his head but instead of crying momentarily and then moving on as usual, he sobbed for over half-an-hour afterwards and was extremely heartsore. My neurotic, mama-brain went into overdrive of course and imagined all sorts of devastating consequences which might have made this head knocking different to the hundred others #eyeroll. About two days later Sam was rubbing his left eye and I mentioned to his dad (while Sam seemed preoccupied with his iPad) that his eye seemed to have been troubling him ever since he'd knocked his head. Sam (who was on the bed again at the time) calmly put the iPad down and, albeit it very cautiously and in super slow mode, replayed him falling and knocking his head. It was the cutest thing ever because, of course, it came complete with fake tears and the need for more of the same hugs and cuddles as well 💜
