In three days

In three glorious days, Karsen will be seizure free for ONE YEAR, one year people! How amazing is that?! As always, I'm on watch, just waiting for them to return but it's been amazing being able to have one full year of him not being put on hold. 

I haven't been on here much because we've just been busy. We've been busy with sickness in our house which seemed to last for a good solid month and the whole time I was super stressed just waiting for Karsen to have a seizure since he had a high fever. Thankfully not a single one. We've also been taking a bit of a break from PT. You know, the one where we had to leave 35 mins early because it was so horrible. Yeah, that one. We wont be seeing her again until two, almost three, weeks from now. We've been enjoying summer. We went to Tahoe and broke in our trailer for the first time, the boys loved it, they also did really well. We also made a day trip to Tahoe to just hang out on the "beach" aka the lake shore. It's been surprisingly relaxing. 

The one thing that hasn't been so relaxing was the stress I was putting on myself of the pressure for Karsen to start talking. There was mention by someone (and I can't remember who) that maybe a communicative device was needed. That just broke my heart. So what did I do? Stress. A lot of good that does. And then Karsen just decided a few days ago he was going to say UP. That's right, he said up and even put both arms in the air while saying it. That was the light I needed. I also just got baby signing time to get his communication up a bit. I will try anything. Tonight was our first night watching it and he actually was trying to imitate the babies on the video! He's said up a handful of times now, even said it for my mom. :-) It was the glimpse of light that I needed to pull it together and get out of my funk.

His drooling is still REALLY bad. I was told by a fellow hemi, their OT suggested kinesio taping around the jaw to keep their mouth more closed so they have any easier time swallowing. I need to look into it more but it's worth a shot. After reading that it turned on a light bulb for me, Karsen is always mouth breathing. I wonder if he has a hard time breathing through his nose? Maybe there is some connection there. So, the next time we see his pediatrician I'm going to bring that up and see if we can get some progress there. 

We still aren't walking yet. He'll walk holding your hand and is still not 100% stable but we're making progress. He still isn't pulling himself up to standing but I have the feeling once that happens, that's when he's going to start walking and taking off. I'm really not in any rush for myself, it just breaks my heart that he can't play the same way other kids his age are and also wants to be able to.  He's a tough cookie and puts up with a lot. I just wish I could take on some of that struggle for him, who am I kidding, I wish I could take all of it for him. 

Other than that we've been dealing with regular toddler behavior and some not so regular behavior but it seems to be getting better now that he's starting to communicate better.

We are still taking it one day at a time here but it's starting to get much easier on everyone.

Happy Summer!