more, more, more and more busy

Wow! I can't believe how long it has been since I've done an up date. Karsen has been doing so good, and we've kept real busy that I haven't had the time to sit down in front of the computer and put something down. 

First comes first, we are STILL waiting on the referral paper work to go through for the botox. :-/ Fortunately I was squeaky enough they assigned someone to Karsen's file to call every morning to see if it went through, and in return call me to let me know the up date. It pays to be annoying. ;-)

We put in a request to get Karsen's hearing checked. Just another thing we need to double check to see if that's the reason for no speech. When he had his newborn screening done, it took them a while to get a read off of his left ear (at the time we had no clue what had happened to Karsen in utero, so we didn't think anything of it.) Waiting for the referral to go through on that as well.

Kuper and I have been a little worried about night seizure activity after some weird twitching that happened one night a little bit ago. Our neurologist agreed we should get an EEG to be safe. You can never be too safe when it comes to seizures. So, Friday Karsen had a sleep deprived EEG and was a total rock star. I had to keep him up until midnight the night before and wake him up at 5:30am to get in the car and drive three hours to his appointment. He did great. Didn't complain once. He blew me away when they put his leads on, not a single tear or argument. Quite the polar opposite of his last EEG. He fell asleep easily and sat through the strobe light smiling (silly kid), and also let us "play" peek a boo while they held his eyes closed for ten seconds twice. Seriously, I was blown away. We didn't get the results that day and still haven't gotten them but I'm awkwardly at peace with the situation. God has a plan, he's gotten us through it before, and he'll do it again.

Karsen has been doing amazing, starting to act like a typical two year old. In fact, he went to a 2 year olds birthday party yesterday with lots of other kids (in the past parties have been a nightmare and things I started to dread) and he did great, had so much fun playing and walking all over the place. For a brief moment I forgot about his CP ( and I mean brief).

Speech therapy was a little difficult today, he didn't want to do much. His sleep schedule has been completely thrown off after Friday. He was asking to go to bed for a nap at 10am. I think it might take us a few days to get back into routine.  We also discovered that tongue movement is very hard for him so that's another thing we need to check of our list to make sure that connection under his tongue isn't too tight.

We have an appointment with his ophthalmologist next week. They'll dilate him and see how his progress has been. The last time we were there we talked about the possibility of not needing the glasses. We lost the glasses for about a month (thank you my sweet boy for hiding them under the crib) and during that period of time I couldn't help but see how his eyes were still crossing, especially his right eye. So, I don't think we'll get to ditch the glasses any time soon.

So, we are once again in the phase of waiting for paperwork and dates to pop up. We have the audiologist, and the botox we are waiting on (the good news is once they approve the botox we go straight in for the procedure, no clinic appointment necessary. I'm so ready to not see that rash on his chin!) We have a regular check up appointment for both boys with their fab pediatrician soon, and then the eye appointment. Busy, busy.  Things are going so smoothly for us though so I really can't complain. (I never thought I would say that, lol)

Here's some pics of the EEG on Friday.