Wednesday 6 November 2013

Day 57: Awards, eyebrows and epilepsy

It was a very exciting morning as we knew Remie was going to receive her second merit awards of the year (all kids get 2 and her teacher fit hers in before I start chemo).  She stood up proudly on the stage of the K-2 assembly and received her award for "Enthusiastically approaching new things and being a great role model in class".  She may drive me nuts, but she is destined to make her mark on the world.

From that proud parent moment I went for my first ever tattoo. Yes, you read that correctly. I took some advice and had my eyebrows tattooed on. "Cosmetic tattooing", it is called. It also covers post- mastectomy nipples for those who weren't able to retain theirs. Jill was a fabulous woman with a great attitude (and boy did she look good as well). She inflicted much pain on me (ok, I think I am a wuss) and left me with dark caterpillars above my eyes (I am assured by many that they will fade - but unlikely before Nick's company Xmas party this Friday...). I am holding out hope that I made the right decision to prepare for the loss of my eyebrows as there is no way I would have done this otherwise.

I then raced to pick up Remie and take her to the doctor to get the results from her sleep study. Dr. Hugh greeted us and asked how we were. I told him about Remie's recent run of night terrors and sleepwalking as well as my diagnosis. He then ran me through the sleep results, which ruled out sleep apnea and shaky leg syndrome and did not suggest the need for removal of tonsils or adenoids. He said that her EEG (brain wave measurement) was abnormal and showed a "spike and ave" pattern characteristic of epilepsy, specifically benign focal childhood epilepsy. He said that night terrors and sleepwalking could be part of this and we could medicate if we so choose if this were indeed the diagnosis. He said this usually passes by puberty and rarely needs to be medicated unless it causes great disturbance. wrote a referral for a full EEG but wasn't too worried and said there was no urgency.

Just after 8p tonight Remie had a massive night terror, complete with sleepwalking and big jerking of her right leg and hip possibly consistent with a seizure. That's the emotional straw that broke the camel's back today. Thankfully tomorrow is another day. And thankfully my fridge runneth over courtesy of my wonderful friends. I don't know where I'd be without you.

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