......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

One month off the ACTH injections

Today marks the first month since Oakley has been off ACTH injections, and such a miracle drug it has been. We thank God every day for how far he's come since this all started. He's doing amazing, and continues to do amazing every single day. Love how he's learning new things daily and taking in the world around him with big smiles and inquisitive eyes. 

His latest fun thing to do is swing, he loves swinging. He gets such a thrill when we push him on a swing, it's the funniest thing and he always breaks out laughing his sweet little laugh. 

Swinging Swinging

We haven't been for walks in the driveway since Saturday, and every time I open the front door he is there ready and waiting, but due to the weather indoors is much better and much warmer, sorry little man as soon as it stops raining and the weather starts warming up you can rule the driveway once again. For now lots of snuggles and cuddles for Mom, Dad and Big Sister. <3

Today we attempted to practice our crawling position. In position and then flat on his tummy, he's not very fond of tummy time, so this might take a while, but he knows which position to be in with a little help from Mom, but not very keen on staying that way, a little bit more practice and I'm sure he'll be zooting all over the place, for now we'll stick to the walking ring to get around, and boy does he love his walking ring, being mobile is the best Mom! <3

Swinging with my Mommy

Blood Test Day...

I don't know if it's just me, but surely someone that takes blood from patients for a living should know how to find a vein without causing trauma or pain in the patient, or am I an over achiever thinking this. 

Well after 3 months of going back and forth to hospitals, and having numerous blood tests, Oakley doesn't flinch for needles anymore. He's been pricked and prodded numerous times, and now he just lays there as if it's the norm. Sad but true, poor baby. Anyways today he went for a blood test to check his Epilem levels, and for a platelet count, and the lady who normally does it for us is off sick, so we had to settle for one of the 2 people who've done it before and failed badly, leaving my little boy traumatized and in tears. The lady that usually does it literally does it in under a minute. She gets the needle in first time in his arm, draws the 2 vile's and then it's done. Oakley doesn't even have a clue what just happened. Whereas the other 2, we can go on for 5 - 10 min, and it's not a nice experience at all. 

The guy that did it last time back in April, couldn't find a vein in the arm after trying 3 times. Then he decided to try the hand, and he failed at that too, so he went to the other arm and then eventually came back to the hand he just pricked. (I'm of course fuming ready to stick needles in his eyes) Oakley  was screaming the room down, from a baby that hardly cries, he let everyone know he had a voice. So after 10 excruciating minutes, he finally just left the needle in his hand and literally squeezed Oakley's poor little hand till he got enough blood in the vile's. My poor baby ended up with a little bruised hand. We complained and this guy had a ''talking too''. So after our experience with him we refused to use him ever again, and our doctor understood our feelings which was nice. 

Then our other horrible experience was with a ''experienced'' lady who has been doing this job for 20 plus years, and knows exactly what she's doing....well....she had no freaking clue. We went in, Oakley lay on the bed already expecting what's about to happen as he's done this so many times. So we start looking for a vein, she finds one in his arm. She places the needle in, and nothing. No blood comes out. So she wiggles the needle (and it looks so sore), Oakley is now screaming and not impressed at all. So she takes the needle out, and she tries again. All whilst apologizing and sighing....my mind just saying get on with it...you are torturing my poor baby. She then eventually gets the needle in, and some blood drops out. So her words to me, in all these years (20 plus years) she's never had such a hard time getting blood to flow from a vein. Well....my jaw was on the floor, and I could feel anger taking over me. I was ready to hit her, but I had to stay calm, breathe, and just be there for my baby, calm him down, just get on with it I said. Anyways, so the needle is in his arm, she's now squeezing his arm to get the blood out, drop by drop by drop the blood slowly comes out. She's now balancing tubes, and putting them down and then trying again. (in my mind I'm thinking you really can't do that, because you'll cause the blood to clot, me a Mom of 2 kids, no degree in any medical field at all I even know that blood will clot if left open in the air....breathe I kept telling myself...breathe), so eventually she got enough blood for the tests and Oakley is still crying, we put a plaster over his arm and I just picked him up and got out of there, it took 8 minutes in total...never have I ever met such unprofessional people in my life, no apologies, nothing. I was so irritated. Yes Oakley won't remember any of this when he is bigger, but a Mommy never forgets, and it's just heart breaking that he has to go through this. 

We got home and literally 2 hours after the bloods were taken we were called back to say unfortunately the bloods failed as it was clotted. WTF!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! So we were very angry parents. So we had to go back, thank God our lady was on duty, she literally found a vein, placed the needle in his arm and in under a minute we were done. Why can't the other people in that hospital be as professional as this lady. Surely they should go for lessons with her. 

Anyways, long story short we had to go for blood tests today. We got there, and our lady wasn't there. (VERY VERY SAD MOMENT), and we had to have the bloods taken today. So we either had the guy or we had the 20 plus year experience lady. Tough choice. None we wanted to take but we had no other options. So we went with the guy. Who tried so hard to be courteous and friendly with us, and all we said was do it right the first time. So in I went with Oakley. Layed him down on the bed, and the process began. First he looked for a vein, he checked all options first, and eventually he settled on Oakley's little hand, and it was like re-living the first time all over again but this time not as chaotic. The needle went in, and he squeezed his hand to get drop by drop by drop of blood out. Seven long minutes and a few tears from Oakley, he was not impressed. Neither was I because if one lady can do it in under 2 minutes why does it take the rest of them so flipping long. GRRRRrrrrrRRR.....breathe Mommy breathe I kept saying to myself. So distracting Oakley for 7 minutes, and trying not to bop someone on the head, I stayed calm. Then the guy has the cheek to say to me ''don't compliment me yet till I'm done''. WFT...I wasn't going to compliment you at all...you doing exactly what you did the first time. NO comment and after Oakley was plastered up I said Thank You, signed the paper and left the building. Before we left the main guy in the front said to me was that a better experience than last time...I said NO, and then continued to say ''Please tell our nurse we miss her when she gets back''. 

So bloods and nurses are not my cup of tea. I'm one very protective Mommy. Don't mess with my little boy. I'll bop you on the nose. 

Protective Mommy
(Back the ''F'' off)

Dear Baby Boy

My Dear Baby Boy:

Years before you were even a twinkle in my eye, I imagined you in my dreams, and pictured how beautiful you would be. As I carried you during my pregnancy, I didn’t know if you were a boy or a girl, but deep down I knew you were my son.

When I took you in my arms for the first time, you felt right where you belong, and you’ve seldom left since.
You are my tiny angel, my breath of fresh air, and my heart. I always new I wanted a daughter, but I never knew how much I’d adore having a son. I’m not the only one who can’t get enough of you. Your sister thinks you’re the coolest person in the world. I think you think the same about her. I’m not sure how long this mutual admiration will last but I’ll do my best to help you two to stay close.

Your father couldn’t be happier to have a little boy. He’s extra gentle with you now because you’re still small, but I know he can’t wait to throw you around and get dirty with you (your sister isn’t a fan of much mess).
How did I get so lucky with such a sweet baby?

Your soft cries are easily calmed when I hold you close and I rub my hands through your soft head of curls.
Your laugh sounds like music from heaven. And I can strike the chord whenever I please simply by kissing your chubby neck.
I am blessed.

A good attitude will take you places. I’ll teach you lessons like that. I promise to always love you, and do my best to raise you to be a kind, brilliant and happy.

Thank you for joining our family. Welcome to a lifetime of love.

Love,
Mommy
(Author Unknown) 

I came across this letter on line, and it's amazing how every word is so true. This is exactly how I feel about my little boy. He's an amazing little person, very blessed to be a Mommy to two amazing kids. <3

Sunny Winter Days

Nothing better than going for walks with my 2 kids on a sunny Winters Day, even if it's just around our little garden, or up and down the drive way. Oakley now anxiously anticipates when the gate is going to open, and he charges, full force. Those little legs in his walking ring, just go..go...go...he loves it. His Mom of course is running behind him all the way making sure he doesn't topple over from how fast he goes. Got myself a little racer in the making here. I can only imagine how fast he's going to be once he learns to walk, I'm definitely going to be kept very busy with my little speedy. 

Tummy Time

Every afternoon we all go for a walk down the drive way and then around our garden, and I think Oakley is figuring this out, because once the door opens he's out and ready to go. Such a clever little monkey I have. I love how he's figured out how to go from left to right, and from right to left, backwards and then forwards. The best part was when he was trying so hard to catch his sister on her scooter. One minute she's there and the next she's on the other side, and he tries to hard to catch up to her, but she's way to fast for him, but don't worry one of these days he's going to out run her, and I'm sure he can't wait.  After our walk I decided to water the garden, and he was so amazed by the sprinkles coming out of the hose pipe, he just wanted to touch and be involved. He absolutely loves water, and when the little droplets of water touched his face, the smile and giggle followed by a little shiver was so cute, and then wanting more, Summer is going to be lots of fun with him and the sprinkler, my sweet little boy.

Yesterday he had his first shower with Mommy and Petal, and that was so much fun. He loves how the water comes out the top and he tries so hard to catch it, then giggles, so I put him down on the shower floor and he sat there splashing and smiling at his sister, then they both were under the shower head splashing and laughing. Precious moments. 

Today though he had his bath, and he's figured out that splashing is LOTS of fun. He now splashes the water all over, that by the end of the bath the whole bathroom floor is wet. But the joy in his face when he splashes with both hands and how the water splashes in his face, it's like the biggest joke to him, he's in his element. Nothing beats bath time fun. 

Over the past week, I've noticed how Oakley has started picking him self up from a lying down position. He'll lie down on a flat surface and with a couple tries he lifts himself up into a sitting position, and he's so proud of himself. Mommies clever little boy. So any day now I see the cruising phase starting, looking forward to it, he's developing so nicely every day. He just continues to amaze us every single day. He's also slowly starting to get the ''bye-bye'' hand wave going, he's nearly got it, and gets so excited when you say ''bye-bye Oakley'', he looks at you with the biggest grin, and then that face that says ''Mom where do you think you're going?''. 

On the 6th we'll officially be 1 month off ACTH, and so far so good. He's doing amazing. My little man is a superhero. 

So after a long fun filled day, both kids are fast asleep and ready for another fun filled day tomorrow. Sweet dreams my babies. <3 

Officially 1 month seizure free and counting...

Today marks 1 whole month that Oakley's been seizure free. My heart sings with joy, my little boy is doing so good. He's always smiling, always happy, and he's really becoming very, very curious about the world around him. Loving every moment. Last month this time we were anticipating to see if and how the ACTH injections would work, and will they work...and after 6 days of being on them we finally got to see the seizures/spasms stop. It was a weird feeling, because for 2 whole months every single day without fail, Oakley would have numerous episodes, and as the days went on and on they just got to be more and more and more and more intense. So on the 27th of May, the first official day of NO seizure's whatsoever, we were amazed, confused as we normally would anticipate them, knowing exactly when and how long they would last. We sat there and nothing, not one. Nothing to write down, no amounts of spasms, no times to jot down, and the best part we didn't have to take a video recording of it, I could actually lift my baby up and hold him. Whereas we used to just lay him down so he could have is seizure, leaving us feeling helpless, and me as a Mom heart broken that I couldn't do anything to stop them, or to help him. Today I held him extra tight, I enjoyed all the cuddles. I loved all the smiles, the babbles, the curiosity in his face as he takes in the world around him. My heart consumed with so much relief so much joy, my little boy is a completely different person to what he was a month ago, and I thank God every day, I thank the Doctors, the Nurses, my Family, my Friends, I thank everyone, for their continuous prayers for my little superman, I thank my Husband, my Daughter, and I thank myself. Miracles do happen, and Oakley proves it to me everyday. He is my little miracle. 

Oakley's response to the ACTH was so quick and  so amazing. He responded immediately, and he will forever be my little superman, he continues to over come the IS every single day. He's just an amazing little person, and I am so blessed that he is my son. 

He has become so mobile in his little walking ring, he loves being able to go where he wants to go. He loves following his Daddy around, and if he see's his sister and her back is to him, he'll shout and make little noises, until she turns around to see him and then he's full of smiles. He's at that stage where he's learning ''cause and effect'' and it's amazing to see how his little brain is taking what he does and then what the effect will be. Such a clever little boy he is. We gave him a lemon to hold, and of course he'll drop it as he is still getting used to holding things with those little hands, anyways, as the lemon drops he looks down and his whole face says ''Oh no, now what?'', it's so cute. So Mommy picks it up and gives it back to him, and after a while he drops it again, and again he makes that face. After 3 or 4 drops you could see that he was anticipating the lemon dropping, he tried so hard to hold them lemon, but because it was heavy, and his hands battled to grasp it, it fell, but just before it falls, he tries so hard to stop it from falling. Amazing. He just knew, and he tried to stop it. My little boy is developing so well, he's on track with what 8 month old's should be doing more a less, and that to us means more than anything else in this world. Each day with him is exciting, a new beginning, new things to learn and to take in. Just amazing. 

We have to watch him though because if we open the door and then unlock the security gate he gets so excited and he charges for the door...and before you know it he's out the door and aiming for the driveway, no driveway time today as it was raining, so he was a little bit disappointed. Starting to become a speedy little driver in his little ''car''.  

Tonight we put him in Petal's old high chair for the first time, and he loves it. He can bang on the table, and make a noise. I gave him some spaghetti to play with, and the faces he was making touching the spaghetti were too cute. Everything is a first for him, and so glad we as his family can experience each first with him, and enjoy it as much as he does. Feeling so blessed. 

Today Petal finished the 2nd Term of school, and holidays have begun. Looking forward to lots of fun and lots of memories to be made, and lots and lots of photos. 

They are now both fast asleep, getting their energy ready for tomorrow. Looking forward to the weekend with my little family. <3 

We'll continue to take one day at a time, but today we celebrate a whole month seizure free, Mommy loves you my little superman. <3

8 months old today...where has the time gone

Where has the past 8 months gone? One minute I'm heavily pregnant anticipating the arrival of my little baby button, then we celebrated the day of his birth, what a very special day that was for all of us, and today I sit here looking back on the past 8 months wondering where they just disappeared too. Sometimes I wish life came with a remote, moments need to be paused, or even experienced in slow motion, just so you can enjoy them more. Every day with him has been a blessing, he's definitely our little superman. 

                                                    23 October 2013 - Oakley Christopher Page is born

                                       

It's scary to believe that he'll be 1 years old in 4 months time. Wow...my little baby is on his way to becoming a little toddler. So much to look forward too, so much curiosity, so much to explore. So much excitement I can't wait. His big sister has no idea how much fun she is going to have once Oakley becomes mobile on his 2 little legs. Yay!!! So exciting, but for now we are enjoying Oakley in his little car. He's getting so fast now, and loves following people, and Whisper, poor Whisper's little toes are forever getting ridden on. I must just say I'm loving how Oakley follows me to the kitchen and then lifts his arms to say ''up me please Mom'', it's so cute. He knows what he wants and he will do everything he can to get it. Yes he has his Mommy wrapped around his little finger, and I'm ok with that. :)

We are looking forward to the holidays with Petal. Need to plan some fun and exciting things to do together, lots of fun activities to keep us busy. Lots of memories to be made. 

So a big happy 8 months old to my little superman. You're an amazing little person. You've over come so much and you are the strongest and bravest person I know. You are our little blessing. Keep flying high little superman. 

Freedom

This morning we opened the front door, and Oakley got so excited. Once the door is open he takes it as an opportunity to go and explore. So his little legs in his walking ring walk out the door and head towards our little gate. I open the gate and he was ''running'' as fast as his little legs could go, smiling and giggling to himself...FREEDOM...and he made his way out the gate and down the long driveway, loving every second of it. He was up and down zig zagging all over. Fascinated by the trees, and the little shrubs around him. Chasing his sister around, and then he stops looks around, with an excited little laugh, he's off again. Loved how everything around him was just so amazing in his little eyes. After a good 30 min of walking up and down and his Mommy following making sure he doesn't hit a speed wobble, I'm like a little Mommy hen keeping my little chicken in line. I picked him up, because I'm pretty sure his little legs had had enough exercise. We then looked at some flowers and then after a big yawn, we went inside and I put him down for a little nap, and he just passed out, very exhausting being a big boy in the great big world. 

After his 40 min nap he was up and about ready to take on more exciting games with his sister and Daddy. He got in and around Daddy as he was cleaning the fish tank, just making sure Daddy know's what he is doing. He then chased Petal down the passage where he trapped her behind the kiddie gate, she was now his prisoner. They have so much fun together, I just love witnessing how close they are. <3

I have noticed that since stopping the ACTH Oakley's appetite has decreased as far as solids go, he's just not interested in food as he was when he was on the ACTH. I'm not forcing him to eat, as long as he's drinking his breast milk, he's doing just fine. He's happy, healthy, and just full of life. Just taking it all one day at a time. Stopping to smell all the roses around us. :)

Last night I surprised Petal and Oakley with a glow in the dark bath. Petal was over the moon excited. We had the lights off, and we had lots of little glow sticks in the bath, Oakley was so fascinated by all the bright little lights. Petal tried making a little gate with them by linking them in circles, so Oakley couldn't get past, but he's too smart for her, he grabbed them, and opened them, and breaking her little gate. She was in giggles, and he was full of smiles. It was a very fun filled bath time for them both, and he isn't even bothered with the dark, once I put the lights off he was in awe, especially once I added the little glow sticks. Special times. 

Another weekend has come and gone, lots of new exciting experiences for Oakley. Loving all the little babbles, of ba-ba, pa-pa, and ma-ma, loving his curiosity with the world around him, love spending time with my little family. Each day is just a blessing. Looking forward to many many more. 

Ma-Ma, Ba-Ba, Pa-Pa....

My little man makes me so happy. He just has an amazing little spirit. Everything about him is just so special so unique. His Mommy's heart is just full of joy as he learns new things, and shows off his little skills he's learnt, my little Einstein. 

Yesterday Jason came home from work, so I went to open the door to let him in, Oakley was in his walking ring, and as I opened the door Whisper ran out to great Jason, and Oakley got so excited he wanted to see what all the excitement was about, so in his little walking ring he charges for the door, those little legs just go now, it's so cute. He gets to the door and he see's his Daddy, well, did Daddy get such a big smile. It was the cutest thing to witness. Then Daddy walked to the kitchen to put some stuff down, and Oakley followed behind him all the way, walked right up to his Daddy, looked up at him and then lifted his arms up...(pick me up Daddy), and as Jason picked him up, well, he was so happy, and so was his Daddy, what a nice welcome home from his little boy. Oakley then sat in Jason's arms smiling at me, so proud of himself, and so happy that Daddy was home. That whole moment was just too priceless. Such a clever boy, and all on his own. Loves his Daddy. <3

So for the past 2 days Oakley has learnt to babble. He's babbling so nicely now. He's saying ba-ba, pa-pa, and ma-ma. My favorite is Ma-ma of course. Such a clever boy, even though he has no idea what he is saying and I shouldn't really think he's saying Ma-ma to me directly, I don't care, I'll just take it as if he is saying it to me...so Ma-ma, ma-ma, ma-ma away my little boy, you making this Ma-ma very happy. I just love his little babbles, he'll even wake up at 2am in the early hours of the morning and lie in his cot and babble, it's the cutest thing to listen too, and then after some babbling he'll go right back to sleep. Just letting us know all about his dreams. 

Today is officially 1 month since Oakley was diagnosed with IS, and what a long emotional month it has been. Roller coasters have nothing on this, it's definitely a up and downward emotional ride to be on, but I must say I'm loving the outcome so far. He's doing so well. He's just one amazing little individual, with so much interest in the world around him. He's smiley, happy and an all round amazing little soul. Keep at it my little man, you are doing amazing, every day with you is just so special. 

Oakley found his belly laugh

Today after fetching Petal from school I put Oakley into his playpen with all his balls, and Petal climbed in with him and she started to try and juggle 2 balls, and the balls kept falling out. Oakley was rather fascinated by what she was doing and after another ball fell out, he found this funny. So Petal decided to throw some more balls out, well....Oakley was in hysterics, it was the funniest thing he's ever seen. He let out a real belly laugh, the first ever belly laugh Petal's first words were ''Oakley is really laughing, his first real laugh.'' she was so happy that she could make him laugh. She then declared that that means a fairy has been born. <3 It was so precious hearing Oakley give a real belly laugh, so glad I managed to catch it on video. My kids are a special pair. 

Oakley has officially been seizure free now for 3 weeks and counting... YAY!!! Each day is just so special with him, seeing how he's so curious about the world around him. How each little thing captures his attention, how he just wants to feel everything around him, touching, tasting, seeing, hearing and his latest is loud screeching shouting sounds, he does it more when he's trying to get his sister's attention, especially if she's walked away to go somewhere and he thinks she's not coming back, then he'll give that screeching shout. So he's definitely becoming vocal as the days go by. I absolutely love his little babble he's learnt, everything is ''blah blah blah blah'', he has such long conversations with himself, and then I say to him ''what are you saying'' he gives me the biggest littlest grin. My precious boy. 

Today in his walking ring he decided it's time to chase Whisper (our dog) around for a bit. Poor Whisper doesn't know where to turn so she runs and hides on the bed, but she doesn't stay there for long as she has to be by Oakley's side, she's very protective of Petal and Oakley, and has to make sure they both ok, even if her little paws end up getting ridden over. <3

As far as the medicine is going, the 1ml of Keppra and the 3,5ml's of Epilem are starting to become a mission, he's caught onto me and my tricks with the fruit and my blowing in his face to get him to swallow the meds, he'll now sit with the medicine in his mouth for a good 10 min. How I don't know, but he's one very bright boy, know's exactly what his Mommy is up too. So now we are back to the drawing board, needing to find a new way to get him to swallow the meds. Keeping his Mommy on her toes for sure. ;)

After lots of laughing, and giggling he's fast asleep now. He's had another good day. Lots of fun with the whole family, precious memories being made every day.