Clapping

Thought I would share a quick clip of Karsen doing some two hand action. So proud of my little man. Can you tell I cheer and clap for him a lot? He's pretty much amazing! ;-)

Time to taper

Karsen's appointments went great yesterday! We got the OK to start tapering him off the prednisone. Last night was the first night, and boy could we tell a difference already! He slept SO much better. This morning, he's been wanting to play with his toys more and so much more alert. I can't wait until he's off of it completely. Our hope is once he's off the prednisone, his seizures wont return. 

We have a follow up appointment 4 weeks from now. I love his neurologist but the drive is KILLING me! It wipes out a whole day! I'm so thankful my hubby takes the time off to come down with me so I don't have to tackle two kids in the car for more than 6 hours alone. But I feel awful he has to use his vacation time to have it sucked up by mostly driving and two cranky kids since they've been crammed in the car for so long. It makes for a rough day for all. 

Karsen's PT had to cancel on Monday because she was sick, so I'm going to try to make up for it and do some serious PT today, especially since we lost a whole day yesterday as well. 

Happy 4th of July! Hope you all have a fabulous day! Enjoy your independence! 

Oye

My poor baby! Ever since we have started him on his new med, almost 4 weeks ago, he's been super out of it and progressively getting more cranky at night time. I have started to get really worried about him. Two nights ago, and last night gave us a glimpse reminder of what Karsen's first 5 months of his life was like. Kuper and I are pretty shocked we are still married... no really.... we can both be pretty mean when we don't get enough sleep consistently.  Last night, Kuper and I hit a point with Karsen that I felt something was just not right. Call it mothers intuition or whatever you want to call it I just knew. He was waking up two or so times a night which is awful except we was SCREAMING! Nothing would calm him down. Nothing! I felt bad for Karsen because I wasn't able to figure out what was wrong and help him, and I also felt awful for Karter who, in the past two days, got very little sleep due to his brother screaming his head off about 3-4 hours a night. (they share a room) After a phone call to the on call neuro (so grateful for them) we agreed with what the neuro had thought. He believed Karsen was having a reaction to the meds. He wanted us to wait until Monday to call his regular neuro to see what she wanted to do. There is a good chance, especially after the last week, that we will start tapering him off his meds sooner than planned. It breaks my heart he is so medicated. I wish I could take this away for my baby.  Tuesday, we have an appointment with the urologist and neurologist. It always seems the ugly stuff happens after hours, or on the weekends. Praying my boys both get a good night sleep, along with Kuper and I. Bless my husband for letting me try to get some sleep in the morning and then watching the boys while I took another nap. Feeling a little better. Just ready for tomorrow morning so we can talk to the neuro.