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. :)
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