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