Today was a good day...

Oakley was very grumpy yesterday morning, it seems that when he's on the ACTH injections he tends to get very irritable, and not happy, and the only time he's happy is if he's eating, which means Mom on the bed laying next to him so he can feed, I'm just so glad I can do that for him, wish I could make him all better, or even swap places with him, but if I can give him one that'll do him good, I'm glad I can.

In the afternoon he did cheer up a bit, which was nice to see. I had him in the cot and he was sitting so nicely. He's just learnt to sit in these past 2 weeks, such a proud moment for him and us. I also noticed that he's started pulling the toys towards him, and picking them up and examining them. If a toy is out of reach he'll try with all his might to get it...it's the cutest thing to watch. Definitely a milestone for him, so so so proud of him. I also love when I go to pick him up his arms stretch out in the ''up me'' style, loving these moments.

I picked him up yesterday and we had a little dance, his sister Petal decided to join in on the fun, now that Oakley is happy and smiling, shame she doesn't know what to do when he's grumpy, she rather just stays away. Anyways we danced and he smiled so much, was very close to laughing, but for now it was just lots of little giggles. He definitely loves music.

I have noticed that on ACTH he does tend not to sleep as much as he used to during the day. Yesterday he was awake from 12:30pm till 19:30pm, so by the time it was bedtime he was out, over tired. But even though being over tired it was nice to see his little personality back. Whereas before he would just lie on the bed and stare at ''nothing'' for 2 hours, which I didn't find to be normal for a baby at all. I just feel since being on ACTH Oakley's ''woken'' up, and is doing all things baby. My heart sings with joy. Lets just hope it stays that way...I really pray with all my heart it does.

The ACTH has made him more hungry, so whereas he used to sleep from 8pm till 7am, he now wakes up during the night crying because he's hungry. Baring in mind Oakley never cries, he's never been a crying baby. So since he's found his inner cry, he has definitely let us know all about it. So after waking 3 times last night, feeding him and laying him down back in his cot where he'd go right back to sleep for 2 hours and then wake again. Sigh, I can live with that, I can live with anything as long as this IS is gone for good.

This morning he woke up smiling. I sat him in the cot and he played with his toys, pulling them towards himself, and he kept himself busy for a good 20min which was so nice to see. Usually he's just very quiet and clingy, or he'd just sit in his bouncer chair and just watch everything around him,  such a happy moment to actually see him playing and doing things...my baby has ''woken'' up. As much as I don't like this journey he's on, I'm glad to be on it and have the amazing support system we have, family, friends, caring neighbors, as well as the amazing doctors (yes they were in their own weird way) he's had over these past 2 months, and not forgetting God who's been with us every step of the way. Yes I've had my quarrels with Him on occasion but He's been there to listen when I needed someone to talk too amongst all this chaos.

In away I feel that being in the Hospital's for 10 days have kinda made him grow up. Which is sad in a way, because he's not a baby he's just jumped ahead. He's basically just stared showing such an interest in food, solids, loves pears puree and carrot puree, but as much as he's ''grown up'' in 10 days, that's such a good sign to see it's a positive and right now after all that he's been through in 2 months any positive will do.

He finally went to sleep at 13:40pm for an hour and 20 min and woke up with a smile...loving each and every smile from this precious little boy. After his nap he was a little quieter than he was this morning, but the moment his sister walked in the room and danced for him, the smiles and little giggles were in the air.

The best smile for me is the shy blushing smile when he is drinking... he looks at me and I say ''where's Oakley'' the smile with half the tongue sticking out...is just priceless. Love my sweet boy to bits. <3

He's been awake since 3pm, finally fell asleep at 20:30pm, very tired baby. He was rather quite since 4pm, had to work really hard to get some smiles out of him. These meds are definitely giving him mood swings. Poor kid.

Day 7 of no seizures... Yay!!! Lets hope it stays like this FOREVER! I must just say the closer we get to the last injection, and the weaning him off of them the more nervous we are. Every twitch every movement it's just scary.

All in all we've had a good day.


This is Oakley today playing with his toys in his cot, loving every second. Mommy's smiley! <3