......4 months seizure free

It's been a while since I last posted on here, things have just been hectic. September has been a very weird month for us. 

Oakley started doing some strange head shakes on the 10th of September, so I've been taking videos, he would just all of a sudden drop his head down and then start to shake it from left to right as if he was shaking ''NO''. I found this a bit odd, and my husband got on the phone to the neurologist and we were booked in for an VEEG on the 25th of September. So from the 10th to the 25th we had to wait our turn and the waiting is what sucks, we were tense, on edge and just really concerned for our baby boy, as we know waiting is not an option when it comes to IS. Well the 25th eventually showed up and we were admitted into hospital where they stuck the wires on his head and the monitoring began. We stayed stayed on the VEEG for 2 nights, just to be sure that if there is anything the EEG will pic it up. So more waiting, but at least we were in good hands, but what a mission it is now with a very mobile little person, who doesn't sit still, and hated being confined to a bed for those 2 days, so we had to do lots of entertaining, but so proud that he did it and made it through 2 days and nights even with his ''Rapunzel Hair'' (the EEG wires) as his sister calls it. 

Don't get me started on them wanting to take blood for blood tests to check his Epilem levels...oh my word. You would think people who are in the profession of taking blood would know what they are doing....just so frustrating. The nurse hurt Oakley so much just taking his blood. What was supposed to be a 2 minute thing, ended up being a 30 min thing, first we couldn't find a vein then the nurse ended up poking his own finger. so had to change the needle, whilst he was changing the needle my poor baby's arm was tied off with that strap, so it was going blue, and then his blood vessels were popping....I was so furious, I nearly punched the nurse in the face, how can they do that to a baby, Oakley was in tears, not from the needle but from the pressure that strap was putting on his arm. Definitely complained and brought it to the doctors attention, but in the end they don't really care...just sickens me. 

looked so much worse than in this photo...my poor baby

The morning of the 27th a Saturday, the neurologist came in and gave Oakley the all clear...WOW were we over the moon with the news. We double checked and triple checked with him there there was NO Hyppsorithmia just to hear him say it again and again, and he confirmed with us, that there was NO Hyppsorithmia, we were ready to do cart wheels, that was such fantastic news. I was one happy Mommy. I went in to the hospital knowing deep down that he will be fine, I was positive that week counting down towards the VEEG day, and it seems positivity and lots of praying for a miracle really came through. I was relieved for my little boy, and relieved for myself too, my emotions weren't ready to handle any bad news that day. The neurologist said that Oakley's EEG was very clean, no sign of any seizure activity, and that he was very happy with it and he is very happy with the progress Oakley is achieving as far as his milestones are going. So all in all a very good day for us all. Feeling so blessed. 

My brave little boy

He's even started getting into the crawling position, which to us is a huge reason to celebrate, we can't wait to see him moving around and being free to go where he wants, because you can see how frustrated he is that he can't move around to where he wants to go, so once he is mobile, I think that sense of freedom is going to be a very exciting thing for him. Looking forward to that, but for now he's figured out he can stand in his cot, and that alone is exciting, one happy little boy. 

My clever little monkey

As far as the head shaking goes, he said that it seems like a repetitive tic that Oakley has picked up on, something he should grow out of. Well since then I have noticed he doesn't do it as often as he was doing it, so I am relieved. But I will still keep a very close eye on my little man, just to be super sure, but as for now, I am super proud of him. Knowing it's not seizure related, I can proudly say my little man is officially 4 months seizure free and counting. Superman....to the rescue. YAY!!!

We now have EEG glue to get out of his hair, which is proving to be a mission, as he really doesn't sit still, and just wants to go go go....but we'll get it out eventually. The only thing I am hating, is how everyone will stare and give such looks at such a innocent little boy, they are so curious, yet so scared to say anything, just irritates me. Ask....I will tell you what it is, but don't then show that shocked pittyful face....because to be honest, there's nothing to be ashamed of, this is a ''disease'' that not many people know about, and it's something that more people need to know about. We were told that IS affects 1 in 100 000 babies, and that there were 5 cases in South Africa this year alone, and that is high, just sucks that my poor baby had to get it, but he is the bravest little boy I know, and we are so proud of him.  So I'm an open book...ask away. 

So as it's officially October, that means it's the month of celebration. Oakley will be 1 years old on the 23rd, and it's definitely going to be a day worth celebrating, he's overcome so much for such a little person, and a party in his honor is just what's needed, surrounded by all those who have been with us every step of the way, let the celebrations begin. And since Oakley is so mad about Mickey Mouse, we will be celebrating in Mickey Mouse style...I can't wait. Happy 1st Birthday Month to my baby boy. 

Oakley and his friend Mickey Mouse