Our journey through life with hemiplegic cerebral palsy and infantile spasms

Wednesday, May 14, 2014

much needed update

Wowza! I can't believe this much time has passed since I blogged! Life has just been busy. Karsen got bumped up on speech therapy so we get to see the lovely Amy twice a week.  That extra day that been added we just do before hydrotherapy. It seemed not too long ago that Karsen seemed stuck, he seemed to be at his usual plateau. Just as always, with some extra time and lots of hard work things lately have been really falling into place for him. He's starting to try to say m words. They all sound about the same but he's actually trying. The best part? He said Mama on mothers day. Best mothers day gift ever. He now says "uh" for up, every now and then we'll hear him say go, he'll say more and is really trying to say car which sounds more like "ar". Amazing right?
Hydrotherapy has also just taken off. Karsen is now swiming with a puddle jumper on. I was completely caught off gaurd and did not expect him to be able to do that. He's really doing amazing. He's starting to grow so fast now. I'm realizing more and more that my baby is no longer a baby and it's so great to see.
We have Karsen's first IEP (individual education plan) coming up. We have been really busy touring a bunch of different preschools to see which one would be the best fit. That has been really hard. My gut really wants to put him at the same school Karter goes to but I made a promise to myself that I would always look at all options first before I decide. By law they have to offer us a school, and since Karter's school is a private school they can't offer us that one (we'd have to go about it solo, which is totally find if needed). So they are offering us our top pick school (if we had to pick one besides Karter's school) and requesting an aide. I still have no clue if we'll end up going with that school since it's a 45 min drive there but at least we'll have the ball rolling if we need to fight for an aide, which sounds like we'll have to fight. I just want what's best for Karsen and it's so hard to find a school for a typical kid let alone a special needs kid.
Friday we are meeting with an epilepsy specialist to talk about Karsen's previous EEG and see if we need to do a longer one. I'm anxious to hear what the doctor will say and hoping they are good listeners like our neuro has been.
Summer is almost here and I am so excited to get lots of pool time in with the boys. Finally a summer that is going to be a blast for Karsen and not a struggle. Both Karter and Karsen are going to a  two week summer camp at Karter's preschool. I'm so excited to have them both there and to see what they both will learn.
We've been certainly blessed to have so many supportive amazing people in our lives. It's been a crazy road but we're doing alright, actually we are doing way more than alright. Life is good.