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!

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.

Today I saw a little glimmer of light

It's been a very long road for Karsen's speech. We see his speech therapist once a week and have been doing a ton of work at home here and there with oral motor (feeding, drinking, stimulating his mouth). It's been a lot of work with very little progress. There IS progress though. It's the little things, like his lip closure on spoons, his ability to drink out of a straw with out biting it.  He's getting stronger and is getting there. As far as speech goes we've only really gotten him to make the "ah" sound, which he consistently uses on a daily basis for just about everything his pitch and tone just change with different things.  He's also been able to make the "eye" sound here and there, not a ton, but he has. Every now and then we'll hear an "ee" sound. As you can tell, we've had to take things very slow with Karsen. Ive had my moments of doubt and have voiced them many times to his speech therapist about him never talking. She's squashes those feelings right then and there and has always reassured me he will, it is just going to take a long time. He's having to fight through a lot of brain damage to make this happen. He's amazing, it's not surprise. Well, today my sister called and Karsen wanted to say hi. I told my sister Karsen wanted to say hello. I heald the phone to his ear (he's done this before but all that usually comes out is "aaahhh") and told Karsen to say hello. Next I heard a sweet noise I have never heard before, an "Oh" noise!!!! and it was even dragged out and changed in pitch. He was trying to say HELLO!!!! I pretty much hung up on my sister after I squealed with excitement and immediately called Karsen's speech therapist (whom happens to be a good friend). Tried to get him to say hello to here, he kept shaking his head no. lol I then asked him if he was going to be a turd. "ya" his response. Smarty pants. It's just a glimpse but I can see that we will get there. Still working on quite a few different noises but this is a huge step for him after months of work. So proud of my little man. 

Be thankful for today, be thankful how easy it is for you to form words to make speech. Something I never realized could be so hard for one tiny person (or not so tiny person). He's so strong and has come so far.