Summer with a brief break

Summer is in full swing in the Williamson house. We have the kiddie pool up and filled and have a relatively clear schedule. Karsen went to his final group therapy session last week. It was so bitter sweet, you could tell he had out grown the class, he was ready for the next step. The hard part was saying good bye. Some of those therapists have seen Karsen since he was 7 months old, seen us through some really hard times and have seen Karsen overcome so much. I really thought I was going to have a harder time saying good bye but I knew it was the right timing. My little man isn't so little anymore. He's ready. We have his IEP soon, in two weeks, I'm ready as I'll ever be. I'm pretty sure they'll deny our request for an aide but I am not going down with out a fight. In the mean time, the boys and I have been thoroughly enjoying the break from our crazy typical schedule. It makes me realize why I wanted to be a stay at home mom in the first place, being able to have fun with my boys and watch them grown. 

We've had a brief break from PT and OT but we are still going to speech therapy twice a week. He's been doing really amazing with his speech therapist. It's VERY small steps but they are steps in the right direction. Karsen now say's mama, more, ball, boo, and yeah. He's working really hard on saying Dada and go. He's really close. Now when I say that he's saying these words it doesn't mean you will be able to hear it or understand it. It's still very broken. Mama sounds like mmmmmaaaaaa and more sounds shortened like ma, ball sounds like ba and boo sounds like baaaaaa. Yeah is one that is very clear. Every now and then you'll hear him say "uh ya" it's pretty cute. So as you can tell it's a very slow process for Karsen but it's definitely progress. I'm so proud of his hard work.

My work schedule has picked up a bit with school being out and our nanny being more available. I'm able to start working earlier which is nice but man do I miss my kids. I'm trying to figure out a way to work just one day a week if possible but that wont happen until next year. 

We've started reintroducing oat back into Karsen's diet and he's handling it well. Makes his food choice a lot bigger. We've kind of hit a wall with his feeding therapy. He's really resistant to using a spoon or a fork and is very stuck to a straw sippy. I'm going to have to start branching out soon. I'm going to give him a good month off of no pressure eating then get back to it. 

Next week we meet with his Ortho to get him fit for a new thumb splint (his thumb seems to be stuck in more and tighter than usual) and a new AFO since this kid just keeps growing. They are also going to fit him for a constraint brace. Eeeeek! I'm really nervous about this one. It's a brace for his right arm (his good arm) to keep him from using it to force him to use his lefty. I can already see the frustration and fights that are going to come with this. He's starting to be less resistant to using his lefty so now is a better time to start it than later. 

We are still battling behavior issues, some days are better than others, while others Kuper and I just want to go to bed and start all over again. I'm sure most of this is coming from his lack of being able to communicate properly but I'm starting to think it may be more. I'm going to talk to his neuro the next time we see her. 

Karsen is really doing great in the pool and loves swimming. Only needs water wings! If we can eliminate all the tantrums this summer is going to be great. 

We recently got the boys bunch beds and Karsen has blown us away. He does amazing in it! Doesn't get up to stay out of bed when it's time to go to sleep. I think letting him pick out the lightening mcqueen sheets helped. (he actually loves Matter). Here's a pic of their beds and Karsen showing off his left skills.

 

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.

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!