One week

We have hit one week, today, of zero seizures! We have a few more weeks of being on this drug and then we have to tapper him off. The real questions is will they stay away when we tapper him off? We hope and pray that is what will happen. Karsen is moving forward and blowing us away. He's so strong. He's baring weight for longer periods of time each day. We just need to work on getting out of sitting the safe way and then I wont feel like I need to set up a pillow fort behind him. We got bumped up on his physical therapy. He has a physical therapists, an occupational therapist, and an early childhood education specialist. Maria, his physical therapists, bumped him up to weekly. We are in the process of getting his OT to come weekly as well, and his early childhood education specialist will stay every other (hoping we can bump that up soon too). I'm so grateful they come to our house. That would be a lot of driving.

Karsen's benefit is this Sunday. I can't believe it's almost here. My parents, and so many others have been working their butts off putting this together. We are so blessed to have so many selfless people in our lives. 

Three days and counting

That's right, three consecutive days of no seizures and counting! Karsen is doing so good too. We had our usual therapy session today with a whopping three people this time. He did awesome. Mary Beth was blown away from what she saw last week. He's sitting up so strong, reacting to weight shift and strengthening his legs and arms. I'm so proud. We have, however, noticed he's really curling in his thumb into his hand more than we would like. So, we ordered a wrist/thumb splint to give him more support and prevent needing surgery later on in life. The only thing I dread about this is the questions that will come out in public. When I asked Kuper what we should say in response, he simply said "just tell them he has cerebral palsy". Well, you make it seem so easy! ha! 

We took both boys to the fair yesterday, it was pretty hot but didn't stop either one from having too much fun. Karter was in heaven, wanting to go on every roller coaster possible. It was so need hearing him crack up on one of them. It brought tears to my eye to see the joy in his face. Karsen was completely content just hanging out in the stroller taking in all of the bright lights and crazy sounds. It was so fun. Kind of a bummer they only stay in town for four days. I can't wait until the boys can go on the rides together.

A couple of weeks ago, Mary Beth left us an amazing therapy swing for Karsen (and Karter too of course) to play in. It's huge! It can fit me and both boys in it. Both Karter and Karsen love it! 

Here's a few pics of getting some swing time in.

Moving forward

It's been over a week since Karsen started his new medication. As from my previous post, they really affected him the first four or so days. Now, he seems to be more like himself and tolerating them more. As warned by the doctor about the side effects of one medication being appetite increase, HOLY COW! That has hit big time. I've had to start giving him formula because my little body just can't keep up with him (especially with training for a marathon), he's taking 1.5 extra bottles a day a long with one extra serving of baby food. That may not seem much to you but I've gotten his eat routine down, so this is very much out of the norm for Karsen. So far, Karsen has had 4 out of 5 seizure free days. (not consecutively). He hasn't been seizure free for over three months straight. We aren't totally getting our hopes up, but it's an improvement non the less. Because Karsen isn't having the down time of the seizures he's been able to more forward on his motor skills. He's completely transformed from how he was a week ago. This morning he was rolling all over the place, and staying on his tummy for much longer periods of time, along with looking way far up. The biggest thing I notice this morning, as doing our morning workouts (I call them our work outs because I'm usually pretty uncomfortable and Karsen really is working out/building muscle) I sat him side sitting, one foot pointed back and the other toward that knee. He always fights me when I do this, it forces him to try to weight bare, he's only done this twice, both during OT. Well, this morning both hands came down and held himself up fully extended for about 10 minutes. I was shocked and so proud. I'm so glad the seizures have stopped (at least for now) so he can learn and explore. Such a little thing has brought me out of my funk of feeling at a stand still. It's the little things that make a huge difference. I continue to pray that the seizures stay gone. Thank you for all your kind words and prayers for our family, keep them coming ;-). Lets keep moving forward, little man. One day at a time. 

Here's a picture of my little man hard at work.