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. 

Family Fun

A weekend of fun filled fun. Oakley's had a very good 3 day weekend, with his Daddy, Mommy and Big sister. We've had a lot of fun together as a family of 4. Yesterday was Father's Day, and we all woke the Dad up with breakfast in bed. Petal came through at 06:45am, and declared it's Father's Day and it's time to surprise Dad (aka get out of bed Mom), so up I got, Oakley, Petal and myself in the kitchen making eggs and bacon, preparing coffee, picking a flower for the vase on the tray. We set the tray and we go and wake the Dad up, 3 happy smiling faces, in front of him as he opens his eyes, good way to start a morning I think. After his breakfast in bed, we gave him his presents, Oakley loved playing with the wrapping paper and was in giggles, as he scrunched the paper. The Dad got 2 pairs of p.j's, so he is all sorted for Winter (I have to laugh because we've been together for 9 years and I've never seen Jason in p.j's so this is a new chapter...it seems the older you get the colder you get...hahahaha). Sunday was a good day, special times, special memories and lots of fun for all. 

                                                         Happy Father's Day Dad <3

This weekend Oakley has managed to really get the hang of the walking ring, and is now starting to love the freedom to go where ever he pleases. He gets so excited when we open the door leading outside. He gets himself in to gear and bounces his way to the door, and then out he goes, lots of little giggles and smiles, ''you can't catch me Mom''. He then manages to get onto the grass, then gets frustrated because he can't move, he does't have a 4x4 walking ring. So we help him up onto the veranda, and he scoots around and laughs, as he knocks over flower pots, but you can see the sparkle in his eyes when he sees the pink flowers, his mind just wanting to get down to them and give them a taste, the bright pink colour looks so appetizing in his eyes. Everything goes in the mouth, my little inquisitive person. 

                                          Freedom......

                                          

                                          Oakley tasting some Nature...yummy leaves. :)

Today he woke up and helped Mom bake some cup cakes. He was such a pleasure, whereas before he would be so clingy and wouldn't let me put him down, I couldn't do anything. It still amazes me how far we've come in 3 weeks, how much he's just changed, and just how amazing he is. Love him so much. So while I was baking cup cakes he was busy playing in his little make shift playpen that I made by using a blown up kiddie pool, and when he was tired of playing in there I put him in the walking ring and he walked around the kitchen and the lounge exploring the things around him, always in an eye shot of the Mom though, but he was very good. After our baking session he went down for a nap, poor kid was very tired. This freedom and mobility is exhausting for him. So he had a little sleep then woke up refreshed and ready to have some more fun. His sister was ready and waiting for him in the play pen pool, and they had so much fun together. Laughing smiling, giggling, just so special to watch them together. 

Oakley then went for a walk outside in his ring, with the Dad taking some pictures of him, and then we heard a little babbling from under the tree. He walked till he managed to get under the tree, where he stood talking to himself. The cutest little babbling sounds, he's becoming so vocal lately, and the sounds he comes up with, are just so precious. Loving how he's growing into such a little character, his personality is shining through, he's becoming his own little individual person, and such a precious little person he is. 

After much play it was bath time, which is just as much fun. He's figured out he can splash water now by hitting the water, and how much fun that is, except when you get the water in your eyes, then it's not as much fun, silly kid. After bath time we had some tummy action FINALLY, it seems the medicine is working, and a nice warm bath helped a bit, least he feels a little bit better getting some poops out. Petal then climbed into the bath and Oakley then lies on the bed and looks at her in the bath and then he gets so excited with fits of giggles, because now the sister is splashing. Petal is the apple of his eye. <3 

At 18:45pm he had his medicine. I have to now use a new trick to get him to swallow the medicine, I get him to suck on a piece of fruit, which he loves then swallows the medicine and the juice at the same time, win win for the both of us, no more pooling the medicine in his mouth and refusing to swallow and no more drooling the medicine out of his mouth. Mom is finally 2 steps ahead. After the medicines, he went straight to sleep like a good little boy. He's had a long day, but it's been a good one, and lots of fun with his big sister. Sweet dreams my little superman, and my big beautiful daughter Petal. <3

One week off ACTH

Yesterday marked the first week Oakley's been off the ACTH injections, he's had a good week, even though he's been having tummy issues, we've tried every thing we can think of, he did manage to get a little out and as sore as it was for him, I think he feels a little bit better. Shame it's been a rough 2 days for him as far as this constipation goes, will bring it up at his doctor appointment this afternoon, and hopefully he can help us even though he's only a paediatric neurologist, he must know something. 

Oakley hasn't been completely happy today, little bit on the grumpy side, but now and then we'll get a smile out of him. His sister of gets the biggest smiles and loudest giggles though, so Mommy is a little jealous, but their bond is so special, something I know I'll cherish watching every day. 

Today Oakley was in his walking ring, and he is getting used to it, he's starting to go forward, so Jason called him to come down the passage, and he did, he walked from the lounge all the way down the passage...was so proud of him. Once down the passage Jason put him in our room, and he spotted his Orange Octopus in the bathroom, and he wanted it. So we put it on the wash basket and encouraged him to go and get it. It took him a good 5 min of figuring out which way to go, he did a couple reversing movements, and then forward movements, and then some side movements. Then he just stands there staring at the octopus, willing it to move to him. It was a ''stare down''...he then turned to us and looked at us as if to say ''come one Mommy and Daddy give it to me please'', eventually he got into the right position and walked towards the wash basket and picked it up. We were so PROUD.....we clapped our hands and shouted HOORAY and WELL DONE Oakley...such an amazing moment to watch. He wanted something and he went for it, he's definitely a fighter. Such a proud moment for us to witness. 

At 3pm we went to see the Paediatric Neurologist, it was just for a check up to see how Oakley is doing. We walked into the office and Oakley gave the doctor such a big smile, which the doctor was so happy to see. The doctor then decided to play hide and seek with Oakley and Oakley was in his element, because he loves hide and seek, so there was lots of smiles for his Doctor. The doctor asked us how he is doing, so we told him since being on the ACTH and since stopping we are amazed how much Oakley has just come out of himself. How more alert he is, how he is responding to things around him, how he is playing and doing things that a normal 7 and a half month old baby should be doing. He's reaching all his develop mental milestones, and that to us and to the doctor is the main thing, and that he is progressing so we are all happy. The doctor is very happy with how Oakley is doing. He said that his brain is normal and that he's responded so well to the treatment after only a few days, and that's a good sign in his eyes. So we are happy. We do have to see him again in a months time for another follow up to see how Oakley is doing and then to hopefully start weaning him off the Keppra, and then eventually the Epilem. So for now we carry on as normal, we have been told to stop the antibiotics, so that's one less medicine for Oakley thank goodness, because giving him medicine is starting to become a mission, he won't swallow them, he'll pool them in his mouth and just lie there, and you can't pick him up because the medicine will just drool out the sides of his mouth, he's figured us out and is showing just how clever he can be...little monster. :) 

All in all, the doctor is happy. He says no EEG is necessary just yet, so that's a good thing, no EEG glue yay! We did ask what we must do if we notice anything ''seizure'' like happening. Just to be on the safe side, at least we'll know what to do. He said we must just let him know, and if something does happen we'll do another round of treatment, but for now everything is good, and he's happy with Oakley's response to the treatment. He said that Oakley's IS is idiopathic (no none reason/no underlying problem), which in IS it's on the good spectrum side, and that if there are no seizures/spasms then there is no Hyppsorithmia, which is a very good thing. So the fact that he's been off ACTH now for a week, and there's no signs of seizure/spasm like symptoms it's a good thing. That news was a relief off of our shoulders, and hearts, but we will still be on the edge of our seats as the days go by but we will forever be grateful for each of those days. Each day is a great day without any signs of IS, lets pray and hope it stays this way forever. Otherwise Oakley's doctor has been an amazing doctor, and we are ever so grateful for all his help in treating out little boy. Although it's been a long process for us, and we've had to deal with a lot over these past 3 months, we are so glad we've been pointed in the right directions, each direction leading us to new answers, new people, new ways of helping out precious boy, and for that we are very grateful. 

Oh and as for his tummy, and being constipated, we were told we can use Lacson every day to help him soften the stool so hopefully we get him to pass some sort of package soon. Poor kid. 

So for now we just keep praying and being ever so thankful for every precious little moment our little boy blesses us with. One day at a time.....

We got home and he was just tired, so he had his bath, and went to sleep. I then woke him up for his medicine, which he was not happy about, but had to be done, and has gone back to sleep. 

Tomorrow we celebrate ''Father's Day'', Jason's first father's day with 2 kids, it's going to be a special one. Looking forward to so many more memories to come. I love my little family with all my heart, and I feel blessed to be their Mother. <3 

My beautiful pendant of my kids names from my loving husband - A button for my little baby button Oakley and a beautiful flower for my beautiful Petal. Always in my heart. Something I'll cherish forever. 

Who would've thought that I would be so concerned about poop...

Yesterday was a very busy day for us. Oakley has been constipated for a week now, so by the time he actually wanted to try and get it out, he really battled, I've been giving him lots of fluids, I've given prunes, I've massaged his tummy, I've let him sit in a warm bath twice a day, you name it I've done it, and nothing is working. My poor baby ended up screaming the room down last night from the pain. We ended up having to resort to the horrible bum pill method, of glycerin suppositories. I gave him one and after 15 min as the box says stuff is supposed to happen. NOTHING!!! He went to sleep and then after 20 min he woke up screaming in pain. So off the nappy goes and I try my best to help the poor kid out by holding his legs up, giving him another suppository, and nothing....this went on for 2 hours. Eventually he managed a small little pebble, and he had enough by then and he went to sleep. Thinking during the night some sort of explosion would go off in his nappy, and nothing....not a poop, not a sound of any progress...you'd think 2 suppositories would do something...well they did nothing. The scariest thing for me was that as he was trying so hard to get it out, he was wheezing, battling to breath, and his tummy was so tight and going blue I was just panicking, lucky for kind and caring neighbors who would come and sit with you whilst cheering little Oakley on with a ''Poop song''...but after trying for 2 hours he had enough, and you could see he was just so tired. So he went to sleep. 

This morning he woke up, not himself. I don't know if it's because of his tummy being constipated or if he's just tired, or IS related...so I am on edge today. I didn't get much sleep last night, so I'm feeling like a zombie today, but still trying everything and anything to cheer him up and to help get that poop out. 

So we tried more prunes today, but he's lost interest in food. They say after stopping ACTH their appetite also decreases, but then he's also constipated so maybe he's just not interested in eating. I just don't know. But he will still have breast milk so that's better than nothing  I guess. After the prunes which he just turned his nose up too, I gave him 4ml of Milk of Magnesia, which they say helps with constipation....well that was 5 hours ago....tick tock, tick tock...when is the bomb going to explode....we still waiting. 

He does try every now and then with a few pushes but nothing is coming out. I gave him a long warm bath this evening thinking something might just happen...nope. He is letting of some gasses though so that must be a good sign. 

I'm wondering if the antibiotics he's on and has been on since we started the ACTH is causing the constipation? You'd think the doctors would mention it, my poor baby is so uncomfortable and I just don't know how else to help him anymore. I'm really hoping the Milk of Magnesia will kick in soon. I'm actually looking forward to a very messy nappy...come one Poop...come on Poop....where are you!!!

If no action happens by tomorrow, then I think we need to go to the doctors and do a peadiatric enema...he can't suffer like this anymore. My poor baby is definitely not having the best time lately. I'm hoping once the poop is out he'll be back to his happy self again...really don't like that he's been so quiet, definitely makes his Mommy and Daddy very worried, it's like living on the edge...

Ok so we woke up just now screaming with pain, and we managed to get 5 pebbles out...my poor baby, I feel so helpless...and Dr.Google, has run out of ideas. He strained a lot and chocked up a bit, but he did well getting those 5 out, he's now fast asleep. 

You would think a suppository would make it soft or at least a little softer, when can my poor boy catch a break. 

I really hope tomorrow is easier, and he manages to get something out. Don't want to put him through more hospital visits, and enemas. :( 

Very tired and very helpless feeling Mommy these past 2 days. 

Just want my little boy's smiles back without all these issues. 

Wish us luck. 

Tags

Oakley has this sudden fascination with tags, whether it's paper tags or material tags, these tags have to be touch, tasted and then eaten. We've caught him twice with paper in his mouth, happily chewing the tags off of teddy bears or off of the dads bag, and he just looks at you with such innocent eyes to say ''this tastes nice''. Then in goes Mom's fingers fishing all the paper out, he gets cross with me, but nope can't be eating paper, silly kid. 

Today was yet another day full of smiles, and giggles. Loving all the smiles I must say. They just put everything around you into perspective like nothing else matters, and nothing does, that little smile is everything. 

After his morning nap I put him in the cot and the first thing he goes for his his music box toy, he grabs it and starts hitting it to make the music come on. He'll then do a little jiggle and give me the biggest grin. He's happy and very content when he's in his cot surrounded by all his toys. Mommy's happy boy. After Mom did some house chores, Oakley followed ''backwards'' in his walking ring, he reminds me of the tow truck from Cars (Mater), the best world backwards driver...who knows maybe he will be, but for now we'll stick to the walking ring, safer, and his Mommy can have her eyes on him at all times. He walked around our lounge backwards, and aimed for the fish tank, where he stood happily staring at the fish, and talking to them. Definitely has a attraction to water. I've noticed that when we go out and we near a fountain, his whole body will lean towards as if to say ''Mom go to the water I want to touch'', so I let him touch and he smiles. He's loved water since he was a tiny baby, it's just something he's always been connected too. Bath time is his absolute favorite time of the day. the excitement is unbearable, I pick him up and he laughs, and kicks and is just so eager to get into the water, and once in it's all splashing fun. So I definitely have a water baby on my hands. 

Anyways, by 13:00pm he was tired, I lay him down on the bed, fed him and he was fast asleep for a whole hour and a half. He woke up with the cutest little red cheeks, and a big smile, ready for some more fun with Mom. He woke up as his sister walked in the door, so you can imagine the excitement when he saw his sister was home. It just blows me away, precious child. 

So we helped the sister with her homework, he definitely loves being involved, even if it's just tickling her arm while she is writing, oops...lucky for erasers. After Petal completed her homework, we read a story together, and Oakley just stands in his walking ring listening intently to the story, very interested in what Petal and his Mom are up to. 

Then it was time for some jumping in the jolly jumper, which I must say he's definitely got the hang of after only being in it 4 times. He loves to jump, he's managed to jump so that he now rotates from one side to the other, and we play peek a boo, such fun Mom...lets to it again. 

By 18:30pm he was starting to get grumpy, because he was tired. So meds at 18:45pm with the help of his sister, and then some cuddles and kisses from his sister and then he lay down next to me, had some milk and went straight to sleep, sweet dreams little prince. 

So far so good, we are now on 15 days no seizures. 4 days no ACTH injections, and taking it all one day at a time. Just praying and hoping with all our hearts we stay on this track, because we really like this track. 

Smiley

Today is officially the longest we've been off of the ACTH injections. Normally it's every 2 days that he'll go back for them, but because we've been weaned off of them today is day 3 that he's not had the medicine in his body, and so far so good. He's been so happy and smiley from the moment he woke up till the moment he went to bed tonight. He's even laughing and giggling now at all the silly things his Mommy or sister do. 

I had a horrible dream last night, I dreamt that his IS came back and all the doctors could say to us was there's nothing more they could do, and we must just hope he grows out of it. I think it's my heart telling me all my fears through my dreams. Not a nice dream to wake up to at all. This is a dream I really hope NEVER EVER comes true EVER. 

He woke up at 7am this morning and was full of smiles, and that just made my heart feel so much better, his little smile makes everything so much better, it's hopeful it's inspirational, it's Oakley. He then had a little nap again at 9am till 10:30am, and then he was awake and full of energy. Had his breakfast and I decided to do a little photo shoot with him outside on the grass again. He's so fascinated by the grass and how it feels, but after a few photos he had enough, so we went back inside and he bounced a bit in his walking ring, and he's slowly getting used to walking around a bit, still backwards, but he's moving backwards quite fast got to keep both my eyes on him now. He's also starting to reach for things on the coffee table. Petal is not impressed, because he had her drawing book on the floor along with all her crayons, and anything he could get his little hands on. Well I'll take destruction over IS any day. My little boy can turn our house upside down if all he cares, as long as he is IS free for life. 

When in the walking ring he's discovered the fish tank and is so fascinated by the fish, and the movement of the water, he can stand there for hours and be totally memorized by them, and he'll turn and look at you and his eyes say ''Have you seen this cool box Mom, it moves''... so many firsts my little boy has yet to see and I look forward to all the excitement in his face when he sees, hears, tastes, touches, smells,  you name it...lots of memories to be made, so excited for him. 

He had a small snooze this afternoon, 40 min sleep, woke up full of smiles again, and ready for some more fun. Gave him some food, yummy...he loves his food, and then Petal played hide and seek with him, so the house was full of laughter from both my kids, so special. So grateful to be apart of these 2 special kids lives daily. Such a blessing, each and every day. Love them both so much. 

Did homework with Petal and of course Oakley had to also be involved, grabbing her books of the table, just wanting to help his sister with her homework, she of course was not impressed. After homework, the afternoon just went by so fast. 

Bath time, and I've noticed in this past week out of all the 10 little bath toys Oakley has he has only one favorite, his little orange octopus. That's the first one he reaches for, and the only one he has the most interest in, and straight in the mouth it goes, I think it's because of all the 8 legs it has for him to chew on, takes the pressure off his gums, teething most definitely, but loves his orange octopus the most. :) 

He had his medicine at 18:45pm, not a big fan anymore of all these meds, but he swallowed them all like a good boy. Then he had a little laughing session with his sister who tickled him so much that he couldn't control the laughter, it was the sweetest and cutest sound ever. Loving how he's little personality is shining through, it makes my heart so happy. After meds he went straight to sleep, been a long day, but it's been a good day. Loved all the smiles today. :) 

Blowing Kisses

My little boy decided to wake up last night at 3am and talk to himself in his cot till 5am, it was the cutest thing to listen too, with some moaning, so up I got and fed him a bit, and placed him back in his cot where he eventually went back to sleep, till 7am when he has his medicines. He woke up at 7am against his wishes, had his meds and then tried with all his might to wake his daddy up, by patting him on the back....no luck, daddy just carries on snoring...hahaha...poor kid was wondering where those noises were coming from. After an hour he then decided he's tired and went back to sleep till 10am. Nothing beats the BIG bed.

At 10am he woke up, and was very quiet for most of the day. He played and smiled but was just more reserved than he has been for the past 2 days. So of course Mommy and Daddy are sitting on the edge of our seats as we are about to enter our first week without any injections. Praying and hoping that nothing happens. Praying and hoping that Oakley is fine and will be fine now and always. So we officially are now taking it one day at a time, celebrating each and every day that he is seizure free without injections. 

He absolutely loves his walking ring, more of a bouncing ring than a walking ring. Even though he's had a quiet day, he still has been pretty vocal, and his little bounce is the cutest thing, it's like his own little dance and he's so proud of himself when he does it. Precious child. 

Today he's also discovered how to smack his lips together and then say ''mahhh'', so I say to him is he blowing Mommy kisses and he gives me the biggest grin and then does it again...so I do the same, and then it starts to be a game who can do it the most with lots of little smiles in between each ''mahhh''.  Love how his personality is starting to shine through. My little boy know's how to blow kisses. <3 

Petal is definitely the apple of Oakley's eye. He cannot contain himself when he sees her. He gets so excited, his whole body shakes with excitement. She gets the biggest smiles from him, and the giggles between them are contagious. We've noticed the best time to take photos of Oakley is when Petal is in the room, he gives us the biggest smiles when she's in the room. Definitely going to be Best Friends for life. So glad they have each other. <3

This photo of Jason and Oakley (notice his huge smile thanks to his sister behind the camera), is just proof of how much he loves his sister. Not forgetting the handsome Dad in the background. Love my boys so much.

All in all we've had a fun filled weekend. The injection on Friday has definitely made his moods go from one extreme to the next, but the sparkle in his eyes are here to stay. One beautiful day at a time. Love my little family so very much! 

Bouncing and Jumping

My little man has learnt how to bounce whilst sitting on his bum, it's the cutest little thing to watch, and when you say to him ''bouncing bouncing'' he will show off and do it for you. He's also learnt how the jolly jumper works, and he is loving it. I'll put him in it and he'll stand there for a few seconds before jumping, can't believe he's starting to become mobile...the baby stage is slowly disappearing, sad for his Mommy but a very exciting stage he's entering. He loves being able to stand in the jolly jumper and move around. Little giggles and smiles with every jump. Loving it. 

This morning he slept till 9am...''hallelujah'' music....Mom got to sleep YAY! Even though he woke up 4 times during the night. You can definitely tell the nights after the ACTH injections how they affect his whole mood. He wasn't as happy as yesterday, so my little grumpy was just that grumpy today, although Mom did try her best to cheer him up. We went for a walk outside and I put Oakley down on the grass so I could hang up the washing, he was so in awe as to being put down on the grass, he loved touching and pulling on the grass, and then he does his little bounce with a little giggle. Then he started staring at the sky and the leaves on the trees, absoulutley fascinated by all the things around him. Seeing things through the eyes of a child, makes you yourself see things for the first time as well. It's like kids actually help you to pause and take in the moment. It's amazing. 

Dad and sister went for swimming lessons this morning and then they went to find Oakley a walking ring, a gift to him for being such a brave boy and for all that he's been through these past 2 months. So they came home with a walking ring that is identical to the one Petal had as a baby. I remember when we bought her one, and how the first thing she did in it was walk backwards. Well, Oakley is the same, we put him inside the ring, and he immediately started going backwards, and then he would stand there and start to bounce. Hahahaha, we were all laughing, because it is the cutest thing to watch, it's like he knows if he stands he needs to bounce. Looking forward to being chased around the house in the walking ring, when Petal was a baby I used to put her in the walking ring, and she would wait for me to open the bedroom door and she would charge 100 miles per hour down the passage on a mission, I have a feeling Oakley being a boy will be much faster, and the curiosity in him will start coming out, he's definitely going to be an explorer, hiding the baby powder (been there done that with Petal, all went quiet and I went to look for her and there she was covered in powder, walking ring covered in powder and the floor covered in powder hehehehe, mischievous little people they are). He sat in the walking ring for a good 20 min going backwards with the help of his sister trying to show him which way he needs to go, but then he'll just sit there and bounce and push the steering wheel's horn...beep beep....and smile, so proud of himself, such a clever little person. 

He's now sleeping, all snuggled up on the bed dreaming sweet dreams. Looking forward to another fun filled day tomorrow with my little family. <3 

Last ACTH Injection Today....

This morning Jason woke me up and said ''Oakley is smiling at me.'', I said '' Why did you wake him up''...hahahaha...just a few more minutes, but then as I sat up Oakley lifted his head and gave me the biggest toothless grin, to precious for words. Ok Mom's up, 06:15am lets start this day. 

After dropping Petal off at school we went straight to the hospital for Oakley's last ACTH injection, and what a brave boy he was, definitely doesn't flinch for needles at all anymore. Then we ''escaped'' out of there uttering ''goodbye hospital, hope we never see you again'', and we drove off. Oakley slept from the hospital all the way home, and then he woke up had some milk and went back to sleep right against me in the bed for a whole hour. Not a bad place to be on a very cold morning. Moments like this I'll cherish forever. So after his hour nap he woke up and we decided to make donuts, Oakley sat in his tent with all his toys, and kept himself busy, happily playing and doing a little bounce to his music, and every now and then he'd look up at me and give me a smile. Whisper (our dog) walked past and all Oakley wants to do is grab her tail, she has no idea what's coming once he starts crawling let a lone walking. Hehehehe, poor Whisper. 

Petal came home from her 1st sports day, exhausted and yet still full of energy, oh to be 7 again, and when Oakley see's her there's an instant love in his eyes for his big sister it is so amazing, she can do anything, and he'll just giggle at her, and she always gets smiles no matter what....it's just so cute. It's a very amazing bond that they both share, something they'll both treasure for years to come. 

By 14:30pm he was tired and went to sleep nicely, he slept for a good hour and 20 min. Woke up smiling again...loving these smiles, they getting bigger and happier by the day. We ended up back in the tent with all the toys, and with Petal, dancing and having fun. We then tried standing and looking at the fishes in the fish tank, very amazed by the little fishes, just wants to touch them even if it's only through the glass. 

Then Dad came home, and it was lots of laughing and giggles from both kids, Oakley loves playing silly games with his Dad. Then bath time which he absolutely loves, he's now starting to lean himself forward when we standing near the bath, in a way he's saying ''hurry up Mom, put me in the bath''...hahaha, a real water baby. 

Supper time, tummy is all full and we are ready for bed, very long day for a little boy, but it's been a good day, loved all the smiles, and special moments. 

Now we literally just take one day at a time now...praying and hoping that everything is going to be fine and that Oakley is going to be ok, this past week seeing how he's just ''come out of his shell'' if I can put it that way has been amazing, my little boy is back, smiles, laughs and that little sparkle in his eye is back. I really hope and pray it stays.....forever. Love you my little superman. 

One Day at a Time.....

 

Grumpy Day

Oakley's had a very tired and grumpy day today, his moods seem to match the weather today. We woke up at 7am and had our daily medicines, he's definitely getting used to them now, and is basically sucking on the syringe, don't know if that's a good thing or not, but I'm just glad he's now swallowing the medicine, before he would just collect them in his mouth and hold them there, refusing to swallow, and when you pick him up all you get is a waterfall of medicine drooling down the sides of his mouth. So after our 7am wake up we played a bit on the bed, but he was still tired, so I tried seeing if he would sleep some more, and he did he slept from 9am-11am. I think the past 2 days of not getting much sleep has taken a toll on him, that and the ACTH has kicked in. Poor kid, and we go back for the last injection tomorrow. 

After his 2 hour nap this morning, he woke up a bit happier and hungry. So time for Mom to make some cereal, after which he still ate some apple puree. Very hungry boy. Tummy is full and then he was happy to play. Petal came home from school, and she immediately got a big smile from her brother, it's amazing how close they are, he's besotted with his big sister, and she's just as besotted over her little brother. Love it. Petal said to me today she is so lucky, so I said why, so she said because she has the best brother in the world. (Mommy's heart melts moment) <3 I definitely have 2 great kids. 

By 13:30pm Oakley was starting to get restless and grumpy again, so I lay him down on the bed, fed him and he drifted off to sleep for an hour. Definitely think his lack of sleep these past 2 days have just knocked him out. 

After his short nap he woke up smiling and ready for some more fun. So his very clever Mommy thought of a very clever idea. Since we don't have a playpen, and since we aren't allowed on the floor (germs and all) till his little immune system is back up again, Mommy set up a tent, hahahaha, yes I said a tent. With much effort I must say took Petal and me 15 min to just put the stick things into the holes, definitely need the Dad around for these moments, but we did it. Petal was so excited, she said she's going to get Oakley's toys for him. So I lay down to duvets for comfy-ness and pillows just in case Oakley decided to do a humpty dumpty move (which he does), and we put him inside with all the toys and his face was priceless, it was like ''are you serious'' kind of face, but after a few minutes he was happily playing with his toys, and his sister was in there with him having just as much fun. 

Although the fun didn't last long as his moodiness got the best of him. So back in Moms arms as we go, best place to be apparently. 

Come 5pm both kids in the bath, Petal helping Oakley catch all the toys that float past him, being a good big sister. Supper time by 6pm, he loves eating so much lately, mouth open wide, and the moment food goes in it's that cute little ''nom-nom'' sound...and then grabbing the spoon for more. :) 

                                                                      My Monsters <3

Medicines again at 18:40pm with the help of my little nurse Petal organizing which medicines he must have first. Then it's time for our bed time routine, a big goodnight to the big sister, and to the dad, and then we lay down and lately he'll lie next to me, drink and look for my hand to hold it and then go to sleep. It's just lately that he won't go to sleep if he's not holding my hand. His little way of saying I love you Mom. Precious boy. Fast asleep at 19:30pm, crossing fingers it lasts longer than an hour. 

Last injection tomorrow...eeeekkkk!!! I really hope and pray with all my heart that we've seen the end of IS, and no more ACTH and eventually no more medicines, and my little boy can lead a normal life, the way every little boy should. It's not normal for parents to know what ACTH is, or Epilem, or Keppra, let alone EEG's, Opthamologists and Hyppsorithmia are and all the other doctor and neurologist talk. Sigh! But then again, at least we were always one step a head of these doctors, and we understood what they were talking about, and we did blow their minds a bit with all we knew. So we were at least on the same page. Nothing wrong with that. Thanks to my very clever techno geek of a husband. <3 

So despite being tired and grumpy today, he's had a good day. Another day seizure free, which is a good thing. I do notice that when he is grumpy and quiet, Jason and myself are on the edge of our seats, as we usually would anticipate a seizure about to happen, it's just crazy to feel this way with every little thing he does, and how we just know, 2 months of it happening every day I think it just ''normal'' to us, so having no seizures is not ''normal'' to us...... but the more days with no seizures...normal will be normal again, and we need some normal in our lives.