Cerebral Palsy, Epilepsy, Health, Love, Our Son, Parenthood, Photos, Sebastian at School, Sebastian's Achievements, Seizures, Sleep, Therapy, Toronto

Stepping into the New Year

Recovery Weekend

Recovery Weekend

Recovery Weekend

Sebastian has been doing some pretty amazing things since the New Year started. You’d think he made resolutions and is working hard to accomplish them.

Just wanted to toot his horn and share some of the fun things that have happened despite the big sickness last week.

With Mama’s help, Sebastian walked from room to room in his AFO’s (foot braces) yesterday afternoon for about ten minutes. I held him up and he bent his knees, picked up his legs and moved them forward, one step at a time. This is big news for us since he usually does not bend his knees or even try to walk with his new AFO’s on. He also hasn’t been trying to walk much since he started on his second seizure medication in October, Volproic Acid. I cried tears of happiness and hope. It was very exciting and I’m hoping to get some video when we practice with his Papa-Daddy this weekend. We’ve got a lot of practice ahead and also need to build up his trunk muscles, but we are going to get there, on Sebastian’s schedule. Way to go Sebastian!

Sebastian has stopped breast feeding. I’m sure you read all about that in my previous post.

Sebastian is taking naps again, albeit short. After lunch we lay down facing each other and get under the covers. I close my eyes and try to peak at him with one eye open so he can’t see me. He does a really big pout and whimper to let me know he doesn’t want to nap and then within about five minutes he’s asleep. He sleeps between 20-30 minutes but we try to lay in bed for at least 30 minutes. He started napping again when he was sick and so I wanted to stick with it because with the extra rest he doesn’t have seizures.

We’ve had a couple weeks without seizures and little to no twitches (which are mini-seizures that usually start when he is over-tired). He usually goes a couple weeks without them and then has a cluster, but he’s been resting a lot so fingers crossed we skip the next cluster and keep on going seizure free.

Sebastian is going to sleep the same way he takes a nap, but I am slowly working my way out of the room. We started under the covers together and now I cover him up and lay down next to him. He’s asleep within ten minutes. I think the slow transition is good for both of us and of course coincides with no longer breast feeding. I’m thankful for the video monitor so I can still watch his sweetness sleep!

Sebastian has been moving his tongue more from side to side when he has food in his mouth and is starting to use his tongue to move it around. Although sometimes the food still ends up out of his mouth, he is really working hard to get it back to his teeth, chew and swallow. This is huge progress. The feeding therapy and clinics we have been going to as well as the exercises we do at home have really aided in his development. We hadn’t seen his SLT since before the holidays, as well as the ladies at the Feeding Clinic at the hospital, and they were all thrilled with how much Sebastian is doing with his chewing, biting and tongue lateralization. Me too.

He has more energy and is getting stronger at school. I think his body is finally acclimatizing to the seizure medication. Wahoo!

He has been laughing out loud more and more and making more sounds in doing so. He also knows how to put on a ‘happy face’. Recently he was sad and so we did ‘sad face’ versus ‘happy face’ and now I can say, ‘put on a happy face’ and he gives you the best one around. He is also making more sounds when he wants something.

Last week was a really tough week. It’s amazing how things can turn around so quickly. Sometimes we go months with nothing new and then there is a domino effect and they just keep coming. And I am so thankful for those moments.

Sebastian really does have the best smile ever. He makes me so happy and I just burst with love for him when I look into the rear-view mirror in the car on the way to school and he is laughing at me talking to the traffic or singing a song to him.

He loves school and school loves him. I will never tire of walking in, pushing Sebastian in the stroller, and having him greeted by one of his classmates. I love it. Those sweet voices so happy to see Sebastian and saying ‘good morning’ make me burst with happiness and love all over again.

This week. Yeah. This week was pretty awesome.

For a few more photos from last weekend’s winter snow in, check out Toronto Winter on flickr. I am sure to add more this weekend.


3 thoughts on “Stepping into the New Year”

  1. Hey there – saw your comment on Katy’s blog, didn’t think I’d seen yours before . . . it resonated with me because my daughter with CP also just didn’t get what she needed in time to avoid a brain injury, our problem started with a metabolic disorder, for added fun. Your Sebastian is just a few months older than my Hannah, let’s be friends, he is darling and I’d like to hug him. I’ll visit again – I am trying to get an OMG post up and got sidetracked by these comments I want to leave! Your family is lovely and so are you, Ms. Breastfeeding Wonder of the World. I am quite certain even if we were not exclusive pumpers I would not put up with Hannah smacking my breast the way she smacks my face sometimes because she lacks the words to express herself. Oh, no. But you rock!


  2. I love the part where Seb has on a sad face, you tell him to put on a happy face and he does it 🙂 – He’s growing up! Brings tears of joy. Steadfastness, patience and Gods mercy brings hope. As I went strolling through the amazing photos I could only think how wonderful you and Ali are for the life you give your son. I am sure God is smiling at your tenacity, and how you continue to move forward. I love you.


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