Surviving

We have survived 2+ weeks of NO SCREEN TIME! 2 weeks people! It's actually been pretty easy now, both our kids seem to realize that it's not going on as part of our daily routine, at some point it will come back in as a once a week treat, family movie night or something, and I'm quite happy with that. They even made the trip to Stanford without any screen time at all! 8 hours in the car and not once did they really complain. We packed lots of color books, reading books and toys. Karter seemed to be the only one, besides me, that kept asking "How many more minutes until we are there?" We've entered the "Are we there yet?" phase. Neuro appointment went well, besides the drowsiness, Karsen is handling the seizure meds quite well, no need to increase or change it up. Our neuro is also referring us to a neuro muscular specialist. We are going to explore possible botox for Karsen's left hand. I'm excited to see what they have to say. It will take a few months for insurance to approve and then a few months to get in, but there is really no rush. Karsen's eye appointment also went really well, we are meeting back in 6 months to see if Karsen's right eye is the same as it is now, if so, then we will discuss surgery which might make it so Karsen will never have to wear glasses again! I was really excited to hear that but also a little sad. He just looks so handsome in his cute little miraflex glasses. ;-)

I've been feeling a bit heart broken lately. Karsen has been known as the hitter by his classmates. I've had it mentioned to me a handful of times by other parents. Now let me be clear, not a single one of them were trying to be mean or protective of their child, it more so came out of playful conversation, small talk. So I was never offended or hurt by the comments of other parents. What hurt was having a little boy in Karsen's class ask me "Is he in a good mood today?" When I responded with "I think so." he then replied "So he wont hit me today then?" Ouch.... that stung. My heart broke for Karsen. He of course, has no clue that these kids know him for hitting, and his teachers do an amazing job of explaining to each kid that Karsen doesn't have words to tell them no, but I just don't want this for him. He doesn't always understand body language by other kids, he seems to think everyone is out to get him, everyone wants the toy that he's playing with. He also has personal boundary issues. I feel lost, I no longer know how to help him. I've tried every behavior technique known to get Karsen to stop hitting, it doesn't matter. Poor Karter gets hit about 10-20 times a day on a good day, I'm so thankful Karter doesn't hit him back. I've had many talks with Karter to make sure he understands that Karsen doesn't know how to act appropriately yet. Yet?! Will there ever be a yet? I'm exhausted. I had visions of my boys growing up close, especially since they are 22 months apart, becoming the best of friends. It's just not there. I spend the majority of my day breaking up fights, explaining to Karsen why we don't hit and especially not with a toy golf club. It doesn't matter how nice or mean I talk to him, it doesn't seem to soak in. I pray this is just a phase, in time it will go away all together. I'm just not sure if I can see that happening with in the next few years. When I think about dealing with his behavior issues for the next couple of years it makes me want to curl up and hide. God is the single one person pulling me through  this, helping me trudge through these waters, guiding me while I slip and fall unsure of what way to go. I will never know where my life will lead, what's next in my life, what challenge I will have to face, we will never know that. But I find comfort in knowing He is there, every step and will never leave my side. His plan is always better than mine, and even though right now I'd like to say "It'd be a lot easier if you could just tell me why, where, when" His plan has purpose, while mine? I think mine would just be to survive. His is to thrive.

 

Lots of changes

Karsen has been doing great! With the med now at it's max full dosage (that we are testing out) as of today, he's handled the med really well. We decided to put him on triepital (not keppra since his aggression is already bad) and really we can't complain. He seems more alert at school and at home, the only side affect we've seen so far is drowsiness, he takes crazy long naps (3-3.5 hours). But it seems temporary until he gets adjusted to the med increase. So far I am still seeing his staring spells but like I said he's still just now at the last increase. We have two appointments tomorrow at Stanford. We'll be spending all day there again, not for an EEG thankfully but just because our appointments are a bit spaced out. We have his eye check up to see how his glasses are doing and see if we need to change his prescription and neuro to follow up on everything that has gone on in the last year. The drive is not fun, but I really can't complain since we have such an amazing neuro. 

We've decided to cut out ALL screen time for Karsen for a while. Crazy right?! I mean it's not that crazy, but for those of you that know Karsen, he is a technology junky. We met with his pediatrician last week and went over all that has happened lately and talked a little about his aggression and what to do, as well as his drooling..... ugh..... yes drooling that's a whole different story,  and went over his blood work on food allergies. It was a pretty long appointment as usual and I left crying in my car..... fun! Just simply because Karsen was DONE, done being in that tiny little room. After talking to his pediatrician about aggression she had mentioned a study being done on kids (any kid) where screen time has been linked to aggression..... She told me this as Karsen and Karter were planted in front of the ipad. Maybe that's why I cried in the car, well, ok, not maybe... yes, that is why I cried in the car. I had failed, I totally used screen time as a crutch to get through the day of making dinner, sending emails, getting a break and I felt like I had completely failed my kids. I'm no where perfect and that's ok, but I knew each time I'd put on the TV, deep down that it wasn't the best thing for them. So, I pulled myself together, talked to Kuper and cut screen time all together for at least two weeks maybe a month. It's been going so well (8 days in) that I totally think we could do more than a month of zero screen time. Later on we'll have movie nights still and do small amounts but we will NOT be doing any screen time during the week permanently. It takes me a bit longer to do certain things, like dinner and shower, I've now learned how to shower by strobe lighting (thank you Karsen) but Karsen's freak outs have gotten much less so I have no issue sticking with it as long as I see positive results. 

We had a great Thanksgiving. Went to my parents with my sister's fam. Karsen LOVED the mashed potatoes and devoured a slice of pumpkin pie (that's my kid). We have so much to be thankful for this year. We are so blessed to have our house, our boys, our health. This year has been an amazing year. I'm looking forward to lots of memories in the coming weeks. 

Couldn't leave you with out a sweet pic of my handsome little man. (sending a package to his runner buddy, April)