Opinions

Karsen had a packed morning today. We had a session with his OT and then PT directly after. Both of those aren't out of the ordinary for usual Wednesday routine for us but we had an additional appointment after. We met with his ortho. We went over what would be best for Karsen's right food (unaffected foot) since he isn't pronating as much and a went over a plan to make his constraint brace. He got fitted for all together four things. A new AFO, a smaller SMO, a new thumb splint, and a constraint brace for his right arm so we can start doing constraint therapy. (casting his good arm, forcing him to use his affected arm). He did surprisingly well, it was also the first time he actually picked out the color and design on his braces. Out of all things he could pick for his AFO (spiderman, batman, superman, camo, cars and trucks) he ends up picking out skull and cross bones.... didn't see that one coming, and bright lime green for his thumb splint. He definitely has his own opinion now. In the midst of this appointment another mom happened to be there. She asked me questions about Karsen, which I am always happy to share information, and asked how affected he was since his gait is pretty good. I proceeded to tell her his gait is pretty good, but his left hand is pretty affected and his speech is by far our biggest struggle. She then responded to me with something I didn't expect. "I don't really think there is such thing as a speech delay. I think it's parents being lazy and not forcing their child to talk.  You know, like giving them what they want with out having them use words to tell you." (Insert shocked face here). I was so shocked I didn't really respond in a way I would have expected to. I responded with "well,  Karsen has an oral motor delay so it's been a struggle". And that was that, the end of our conversation. Maybe she's on to something here. All those speech and language pathologist wasted all of their time going to school for their career. If someone had told me I just needed to not give Karsen stuff until he spoke with words, well then he'd be talking right now, right?...... OH MY GOSH! Seriously lady! This is a first. I thought I have heard my share of opinions but this one.... wow! After a good 30 minutes later I realized I have grown some pretty thick skin. Two years ago if someone had said something like that to me I would have let it eat me up, take over my day and all my emotions. It didn't affect me that way at all, instead I walked away knowing I'm doing as much as I can to help Karsen. It's that simple. I knew. I didn't doubt myself. I think that's only something that can come in time. 

Besides the packed morning we've had a pretty low key summer so far. We still are going to speech therapy twice a week and seeing some great results but today was the first OT and PT session we had been too since 3 weeks ago. We've been spending lots of time in the pool and lots of time enjoying being home and being a family. Karsen's birthday is just a little over a month away, eeeek! First off, when did my baby decide to turn 3?!  Where did the last year go? I've been trying to think of what would be the best day for Karsen but I still can't figure it out. If we were to have a party there would only be a select few invited since Karsen doesn't do crowds well. I want  this birthday to be one that is amazing for him. He was so drugged for his first birthday, and his second birthday he had such issues with sensory it was a nightmare, this birthday is going to be great I just know it.

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.