I'm scared to write this. I don't want to jinx things. But it's been one month. For some a month can go by in the blink of an eye - how often do we hear ourselves say how time flies? But for us a month is huge; a huge milestone. Because tonight it will be 5 weeks. It will be roughly one month, 5 weeks, 35 days, 840 hours, 50400 minutes, 3.024e+6 seconds....since Matilda had her last significant seizure. There I said it. It's out in the open and been given to the universe. Some are reading this and are shocked perhaps...I haven't posted anything on this blog about what has been happening with Matilda the last 6 months. But since this is our virtual baby book/family album I realized that I had to post about this. Because it's been 5 weeks and that is huge, it is significant and something worth celebrating. I don't want to forget the first words, steps, or even when Matilda began her journey on becoming (fingers and toes crossed) seizure free.
It's a very long story but on November 4, 2015 Matilda had her first seizure. On November 22, 2015 it was confirmed that Matilda has epilepsy. At first the doctors believed she had complex partial seizures but now think she is having atypical absence seizures. Over the past six months we've had 4 trips to the ER (2 by ambulance!), 2 EEG's, one MRI, tried 4 different medications and a lovely unexpected 5 day/4night stay at BC Children's Hospital over spring break. And finally Matilda is on a medication that seems to be working. It's been a crazy long journey but we've had enormous support from family and friends near and far. And the most important thing to remember is that Matilda is a happy healthy little girl who just happens to have epilepsy - the epilepsy does not define who she is. I think that's why I haven't posted anything about our epilepsy journey thus far...just as Anna has an ear infection today Matilda just also happens to have epilepsy. It's just another part of life and it is OK. I'm not sure if I'll ever post anything else about Matilda's epilepsy but as for today... today we celebrate 5 weeks seizure free.
Our Hospital Vacation
Below is a picture I took on our fourth day at the hospital. Matilda kept insisting she wanted to go home and eat crunchy tacos. She looks sad in the photo but it's a photo that makes me smile because all I remember is how she cute and funny it was when she gathered up all her stuffies on the bed and insisted I put them in the bag to go home! And yes - I made her crunchy tacos her first night home.
On another note...for those of you wondering how this has been affecting Anna....Anna is my STAR! She has been calm, understanding (as much as a 6 year old can!), and been more helpful than I could hope for.
