Our journey through life with hemiplegic cerebral palsy and infantile spasms

Thursday, April 10, 2014

A new specialist to add to the list

Kuper and I have always been concern about Karsen and the risk of seizure activity, I don't know if that feeling will ever go away. A couple of weeks ago Karsen and I were snuggling and his left arm (affected arm) did a quick jerk. It was enough for me to be worried and enough for me to call the neurologist. After emails back and forth, Karsen neurologist thought it was best that we see a epilepsy specialist. It's a lot of things bundled into one that lead us to this decision. With the type of seizures he had before, pushing to get an answer sooner is manditory. It's scary just to think that we may be going down this path again. Thankfully the paperwork got pushed through fast, it only took two days to get a phone call to make the appointment. We'll be heading down May 16th. After we meet with them we'll figure out if (most likely when) we'll get an EEG done and how long. It will most likely end up being an in patient 48 hour EEG. I'm not thrilled we have to wait a little over a month to meet with the specialist but it's better than two months. 

Karsen is LOVING this beautiful California weather we are having. The kid LOVES water. He's already asking to turn on the sprinkler. I'm really looking forward to the summer this year. Finally there is so much he can do and enjoy. 

We are checking out two preschools on Friday for Karsen. I'm kind of hoping a kid will have a melt down so I can see how they handle it. So pray for some kid to lose it. lol. I'm nervous and excited for Karsen to go to school. He's growing so fast!

Tuesday, April 1, 2014

Not much going on

Wow, I've taken quite a break from blogging. Life has been busy. 

Karsen has been plugging along with his usual therapy appointments. He's currently going to physical therapy once a week, occupational therapy once a week, speech therapy once a week, group therapy once a week, hydrotherapy every other week. Phew! Crazy looking at that all written down, it may seem like a lot but it's quite routine for us now. We are gearing up for his transition out of early intervention to the school district. That will officially happen when Karsen turns 3 in July, which is quite perfect since school starts in August. We are touring two schools in El Dorado Hills that are both schools that have combines classes, typical kids and special needs kids. We'll know more next week which school he will go to, we have three different options. It's a lot to take in, a pretty big decision for me.  

No real changes happening. Speech has been a slow slow progress but we are seeing some progress. Karsen is actually able to huff out air to move a bubble, something he was barly able to do with assistance. He's starting to make more variations of sound too. No real changes in his vision, we will see his eye doc in July. Still seizure free! His drool seems a bit better. He's still getting rashes but they are more contained to his chin than his chest or stomach, so that's good. His oral motor skills are getting better which is helping him to control the drool a bit. I'm not sure if we'd do Botox again since we didn't ever see any true results that were worth the pain and time.

Hopefully life will calm down a bit for us at the start of summer. We'll have a break from Karter's preschool, and I'll be done traing. I'm hoping to be able to do lots of fun family trips this summer.