...1 year seizure free...

.                                                                          YAY!!!!!

Having a toddler has definitely kept me busy these past few months, let me say that again, having a toddler has kept me busy these past few months and I am honestly so blessed and so thankful that he is the most energetic, most out going, most fearless 19 month old I have ever met. He's head strong and all in all one AMAZING little individual. He climbs, he toddles, he dances, he claps his hands, he knows what he wants and will come to you to help him with whatever he needs help with whether it's to open his sippy cup spout or to read him a book that he brings to you to open and go through each and every page with him, he's doing amazing, and we are so proud of him and how far he's come this past year. Considering where we were last year and doing so much research on the topic of IS, and the fear and the doubts, and the constant worry, and here we are today, just ever so thankful and ever so blessed. 

From March to May back and forth between hospitals and EEG's, then MRI's and Ophthalmologists, and then more EEG's, to finally being diagnosed with IS on the 21st of May last year to having his last seizure on the 26th of May last year, and each and every day since then has been like walking on eggs, I won't lie to you it still is, but knowing he's made it to one year without seizures is a blessing, it's an amazing feeling I really can't describe. A little person who's only been on this planet or 19 months has been through so much in his young life, and knowing he's doing just fine and is growing and developing the way he should at this age, just shows us how positive his future will be....but one day at a time it shall be for us as our motto stands, it's gotten us this far, and that's definitely something worth celebrating. He might not be speaking yet, but deep down I know he understands what we are saying and deep down you can see he is communicating in his own way, and he'll speak when he's good and ready, and we look forward to that day, but for now, we are just enjoying each day with him, as each day is just a blessing getting to know him more and more. 

He'll forever be known as my little Superman, because he truly is a remarkable little boy and an inspiration to us all. Keep doing what you're doing Oakley, because you're doing great. 

Love you to the moon and beyond.

......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

3 MONTHS - Seizure Free

My little superman playing hide and seek

My little superman is officially 3 months seizure free today. I feel so blessed and so thankful every day for each and every milestone he is reaching all by himself. I am in awe at each and every little thing he does. He amazes me each and every single day. Just feel so blessed and so very grateful. 

Three months ago we were in hospital and today was officially day one of no seizures...If you told me back then to look 3 months into the future I couldn't give you an exact out look, but I kept on praying, and digging deep within myself to be positive and to take each day as it comes, and that's exactly what I have done, and still continue to do to this very day. Thank You to for all those little prayers, for all those thoughts, and for all those heartfelt loves. Miracles do happen, they happen each and every day, you just got to look close enough to see them. 

Oakley is amazing. He just amazes me each and every day. His latest little thing, which I find to be the cutest thing in the world, is walking (with help from an adult), we hold him in our arms, but he just wants to be down...and once on the floor he'll start to move forward, and then walk, of course it's a killer for our backs, but the joy in his face, and the amount of energy those little legs have, who can argue. He's my little Chimpanzee. Love how he walks from the bed to the bath, then stands there holding the bath with such anticipation to get into the water, and once in the splashing fun begins. His poor sister gets so wet from head to toe at the end of the bathing session, but what fun. I think he might just skip the crawling phase all together. 

He has become a very good roller and sitter lately too. He'll lay down on his back and roll from side to side, and then sit up, turn around and do it again, he does a full 360 degree turn. A little man on a mission. The mobile days are clearly on their way...this Mommy is going to be running. Hehehee. 

He's just turned 10 months old, and he has officially got his first tooth, and not the bottom tooth, my son has his top tooth first, he definitely has his own agenda when it comes to ''normal baby life'', he's made to stand out in a crowd. :) 

 I can't believe how fast this year has gone bye, my baby boy is slowly becoming a little toddler, ready to take over the world. I'm sad that the baby stage is nearly over, but then again, he will always be my baby boy. 

On Saturday we see the Neurologist again for a check up, and see what our next plan of action is, and to see what he has to say about how Oakley is doing, and I'm sure he'll want to start weaning him off the Keppra and then the Epilem, we are nervous about that, but one step at a time. 

All in all Oakley is doing amazing. I am in such awe of him. He really is my HERO. I am just so proud of him, and at what a strong spirit he has, and what such a little fighter he is. SO PROUD of you my baby boy. 

Oakley's First Time on the Beach

It was Oakley's first time on the beach on Sunday, and boy did he love every single moment of being there. We placed him on the sand thinking he'll cringe at the feeling of the sand between his toes, and he surprised us and wasn't even bothered by the feeling at all. He sat there, playing with the sand between his toes as well as picking it up and playing with it in his hands, and of course we had to taste the sand just to make sure that it tastes ok, so his mouth was covered in sand, his hands were full of sand, and he just embraced it all. 

My little beach bum

After much fun in the sand, we decided to go down to the surf and feel the water. It was freezing, but he was so excited by the BIG water, that all he wanted was to be put down, those legs were just bouncing up and down with excitement. He absolutely LOVES ''splashing splashing'' (aka water). So he sat there by the surf, and watched as the waves went back and forth, very confused as to why it kept going away, he did get a little bit irritated that it kept going away, he didn't quite understand, but the moment it came to him, well.....the smiles, and the giggles, were priceless. He loved it. 

After much fun in the sea, and lots of sand all over the both of us, he was starting to get grumpy. So a quick wash in the sea, and lots of baby powder to remove the little bits of sand left behind, I changed him out of his wet clothes, and got him all dressed warmly and he was happy again, as much as he wiggled and jiggled trying to get back into the water, it was time to go. It was definitely a memory I'll cherish forever, he was in his happy place, the ocean called to him, and there's nothing better then ''splashing splashing'' in my little boys eyes. 

2 Months Seizure Free....

Today we celebrate the 2 month mark of Oakley being seizure free. He's doing amazing. We are so blessed that the ACTH and the other meds have worked for him. He's definitely a little Superman, for someone that has been through so much, in such a short little life, he's done amazing. My little hero. 

He's always smiling, he has become so busy, and is always on a mission. He loves chasing Whisper around, and Whisper funny enough loves being chased. Best buddies those two. He just keeps amazing us every single day. We love him so much. We are so proud of you little man. 

Will continue taking it all one day at a time, but today we celebrate just how amazing you are. 

Love you forever and always your Mommy, Daddy, Big Sister and Whisper <3  

Happy Happy Happy

Yesterday we had a check up with Oakley's Pediatric Neurologist, we got there early so we didn't have to wait too long to see him. As we walked into his office, Oakley gave him the biggest smile ever. The doctor was very happy to see just how happy Oakley is compared to what he was back in May. Anyways, we sat with the doctor had a heart to heart, spoke about how Oakley is doing and how he hasn't had any seizures since the 27th of May. He did a check up, did a few tests and all in all, he is very happy with how Oakley is doing. He's responsive, he's on the right track for a 9 month old, he's vocal, he smiles, he reaches for things, he shows object preference, he can find objects if hidden under something, he show's had preference as well. He's all in all doing amazing. He is a happy, healthy and very strong little boy, and he is now officially 11kg's. A very big strong baby boy ''Man of steel''. Superman it's time to retire, Oakley is happy to take your place.  In the doctors exact words ''Oakley is a very motivated little guy''. Such a happy and proud moment for Mommy and Daddy. 

My little Superman

We see the doctor again at the end of August for our next check up. With Oakley gaining weight he is already started weaning off the meds, so our next visit we should be dropping the Keppra slightly till we officially weaned off the one med and then we'll wean him off the Epilem. Still a very nerve wracking road for us, as we constantly feel like we are walking on egg shells as far as ''IS'' goes, but as out motto goes, ''One day at a time'', and so far we are very blessed at how well Oakley is doing. 


Today marked the official end to the school holidays, so Big sister goes back to school tomorrow, going to miss her in the mornings, and all her help with keeping Oakley occupied with laughs and games, but I'm sure when we pick her up from school Oakley will be so excited to see her. 

Oakley helping Petal ''playing school''

So today we made the most of our last day of holidays and took the kids out for some fun. We found this little place with swings, ball ponds, games, jungle gyms a all round ''kids heaven''. Petal was in her element, she had so much fun. Oakley woke up from his short nap and as he opened his eyes he just smiled. He was so fascinated by the kids swinging on the ropes, and by the colourful kids toys all around him he just wanted to be on the floor touching everything and anything. He spotted this little green bouncing cow thing, and I put him on it and he bounced with such excitement and such joy in his face, he was happy to sit on it for the whole day if he could. 

Bouncing Bouncing on the green cow

We then took him to the ball pond which was just as much fun, but once he was on the swinging contraptions, the laughs and giggles filled the air, he was one happy baby, being a ''big kid'' playing with all the ''big kids'' toys and thing, it was such a cute and precious moment. After some swinging we put him in the sand pit, and that was just so fascinating for him, his first time in a sand pit, and he tried so hard to pick the sand up and all he wanted to do was hold it, but as he lifted his little hand out the sand, the sand just ran through his fingers, he was so confused by so amazed, such a special moment. Petal then tried building him a sand castle to break down but the sand was to dry, but as she lifted the bucket, he was just so excited to see the little heap of sand before him, that he smashed his hands in the sand none the less, ''thank you big sister''. So after much play and much fun, it was time to go, so he could have his nap, it was a long day, but a very fun and exciting one none the less, kids had a great time. All in all a successful day and fun was had by all. A perfect way to end the holidays. 

Amazed by the sand

Petal and Oakley on the bouncing swing, he was loving every minute

Oakley in his element

Holidays are nearly over

The more and more days go by, the more and more I fall more and more in love with my kids. They are both such amazing little people, and they bring so much joy to our family. I just love how their little personalities are shining through every day. I love how close they are and I can see these two being best friends for life. 

Best Friends for Life

These holidays have come and gone so quickly, lots of memories have been made, and lots of photos have been taken, moments frozen in time, and I am so grateful I could be there for every single one of them. Blessed Mommy I am. 

Oakley is growing so fast, and is becoming so vocal, lots of ba-ba-ba's going on, and ma-ma-ma's, I am pretty sure his first words will be Ma-ma.....won't that just make my day. Hehehe, but time will tell. He's slowly starting to figure out ''bye-bye'' followed by a little hand wave, but he hasn't quite grasped it just yet, but you can see his mind trying to figure it all out, one of these days he's going to wave his little had, and it's going to be the cutest little wave ''bye-bye'', looking forward to it. He's now all over the place in his little walking ring, he's gotten so smart now that if he wants to get over a bump, he'll lift the sides of the walking ring up and push his legs up and over the bump, he's figured it all out, his co-ordination is spot on, and he knows how to get to where he wants to go, my little Einstein. 

My handsome little man

On Saturday we going to see the Neurologist for our monthly visit. So he can see how Oakley is doing and to see when we'll start weaning him off the Keppra and the Epilem, and as much as we really want him off the meds we will definitely be on the edge of our seats when we do start the weaning process, hoping and praying that once we start the weaning nothing comes back, but one day at a time. We do want to do a follow up EEG just to confirm all is well, the neurologist doesn't see it as necessary, but just to ease our hearts we think it'll be a good idea. Just want to know for sure that there is nothing and that everything is ok and he has a clear EEG. So we'll discuss it with the neurologist on Saturday and go from there. But all in all Oakley is doing amazing. He's a happy and very healthy little guy on a mission and very curious about everything around him, especially all his sisters toys. :P

My little Superman