It's like he's ''woken'' up...

For 2 months I noticed Oakley's behavior changing, but by now we didn't know what was ''normal'' anymore. After his daily cluster of seizures he would just lay there, stare into nothingness. It looked as though he was thinking, but then what do baby's think about? He would just lay there and after an hour or 2 he would finally just drift off to sleep. Looking at him just made me more sad. I kept telling myself that 5/6 month old babies don't just lie there especially for an hour or 2. It was like he was here in body but not in mind. That feeling of absolute helplessness hung over me every day. 

Looking at him now after a week on the ACTH injections it's like he's ''woken'' up. He's a 7 month old baby, doing everything a 7 month old baby should be doing. He's responding, he's playing, he's smiling, he's happy. He's Oakley. 

Last night he woke up 3 times to feed, but more for a cuddle. The first time was a horrible screaming cry, and to top it off I sneaked into the room which of course gave him a fright so I could understand the scream poor kid, not someone you can play hide and seek with just yet! Otherwise, after a feed he would snuggle up next to me and drift off back to sleep, then I would pick him up and place him back into his cot where he would happily sleep. He woke up this morning with a huge good morning grin on his face. 

This morning he went for his second last injection. We saw the peadiatrician, and he immediately noticed how ''awake'' Oakley was, how he's smiling and how amazingly he is responding to things around him. He asked me how I am doing (because he saw me in the hospital during our stay there, and he could see I wasn't happy, and there was a few times he came in when I was crying as I cuddled next to my little boy, he has been an amazing peadiatrician.) so I told him, I am happy, I am happy to see Oakley being Oakley and I even said it's like Oakley's just  all of a sudden ''woken'' up, and that just made him smile because that means the medicines are working. Oakley had his injection, he definitely doesn't flinch for needles anymore, Mommy's superman, after the injection, he sat back in his pram and continued sucking on his piece of dry mango like nothing happened. 

I do know that once the ACTH kicks in he'll start being grumpy again, and ever so hungry, but for now he's happily sitting in his cot playing with his toys, and if one toy captures his eye, then he tries with all his might to reach out to grab it. Reach for your goals my boy, you deserve them. 

His afternoon nap was short lived, slept for 40 min but woke up smiling and laughing, loving the laugh, and ready for some more playing. Petal came home from school and ended up playing with Oakley's toys more than Oakley, hehehehe...but he's loving his sister keeping him entertained. He gets so excited when he sees her. 

We even tested out the jolly jumper today, a skill he still has to master, but he was loving it, because those little legs just want to go...soon we'll be scooting around in the walking ring, chasing Whisper. 

Had our medicines at 18:45pm, not impressed as there's 4 different syrups to have, and being tired doesn't help the medicine go down either. After putting up a fuss we were ready for our bedtime routine. Lights out, sleeping music on, and snuggling up to Mommy and baby is sleeping, cuddled up close...definitely makes ''Mission Impossible'' music come in handy when trying to get up, took 2 hours but my little boy is sleeping peacefully. He's had another good day! 

Chatting to Jason (my husband) this evening, he is amazed at how much Oakley has just changed in over a week, we are just absolutely amazed, it's like our little boy is back. We look back at his 5th and 6th month and we realize how quiet and withdrawn he was, like he was trapped in his own body, like this IS was just draining him, but now you can see the life shining through him, through his eyes, his smile, his laugh. It's just so AMAZING to see and experience. One day at a time...and may each day be as good as today... or even better. :) 


                                                   Look at that smile.... <3 - taken today