This should be interesting

Karsen's appointment on Thursday seemed to take forever. It didn't help that the assistant put us in the wrong room, so we sat there for 45 mins. Waiting for the doctor show up while she didn't even know we are there. So, when we finally saw the doctor, Karsen was spent and ready to leave. I quickly remembered how much I hate the eye appointments. They had to pin him up against me while giving him eye drops and then did that all over again to examine his eyes. Kid was freaking out and I was almost in tears.

After much struggling, we were told Karsen's vision is good but he has a strabismus in both eyes now. That indicates its a neurological cause. We weren't sure if he had it by chance before but now that it's in both eyes it's clear it's not by chance. The eye patching wasn't working so we are moving in to glasses. These glasses will help him relax the muscles that are already working properly so the weaker muscles can get stronger.

So, yesterday we went and got him sized and picked out the color and everything. They are pretty cute, and he'll even match Kuper. Keeping glasses on him will be another story. He needs to be wearing them as often as possible. This kid won't even keep on a beanie. We shall see, it will be interesting indeed. His glasses should be here this week. Oh, and thanks again to all the people that were apart of our fundraiser because our insurance didn't cover his glasses so we had to pay out of pocket. Eeeek!

Of course, when he gets the glasses, I'll post a pic ASAP.

Ups and downs

This week has been rough, but it's also been exciting. Karsen is sick, my poor baby. He sounds awful. Super congested, hacking cough, and horse voice. He hasn't been sleeping the best, waking up in the middle of the night, but I'm surprised I'm not feeling more tired. He seems to catch everything. If there is a cold going around, he has it with in a few days. We've been pumping him full of Tylenol and fluids which makes him more comfortable. We've missed all of his therapy this week and haven't been working on much at home since I want him to rest up and get over this. What's really exciting? Karsen took four cruising steps over the weekend! Cruising-holding on to furniture for support, side stepping. He has a hard time side stepping and keeps wanting to step strait forward, I can tell once he's got the balance down he's going to take off. He still hasn't figured out how to pull himself up from his knees to standing. We'll get there, in his own time. Like I've said before, we've been avoiding pushing him this week some can recover first.

Karsen is 18 months old today. Where did the time go? What happened to my little man? We have an appointment with a new pediatrician next week. I wanted to switch his doctor because his current one is a family practice and doesn't have much experience, if any, with kids with cp or IS. In fact I remember him telling me he had never heard of IS before. So, we are trying out a new pediatric doctor. I'm actually pretty nervous about it, not because of the doctor but because he will be getting some catch up vaccines. He hasn't had any yet, and now we have to play catch up. My fear? The seizures will return, which is a possibility. I really don't want those darn things returning, IS rocked our world and sent us on the worst ride of my life. It was a short period of time that I never want to relive. I'll keep you posted.

Tomorrow we are off to Stanford to meet with his ophthalmologist and figure out what's next with his eye. I'm hoping and praying he will be feeling much better tomorrow and be a piece of cake on the long drive there and back. Wish us luck!

Phsyc

Wednesday we had a make up appointment with the fabulous Mary Beth, and before we had our usual PT appointment before. It has been so nice seeing Mary Beth twice this week!!! I love it! Karsen loves it too, for the most part... except he let her know that he didn't like how much she pushed him. We both know it's what he needs. Some good news for you, Karsen is graduating out of baby group therapy class to toddler group therapy class. What do I not like about this? Toddler group therapy class=no Mary Beth. :-( There are new babies coming into the baby group, they need to make room for them and also Karsen is now mobile and should be moved up. So, yes, good and yes, bad. I've made the choice to be optimistic about it in hopes maybe a new PT or OT will make a really good connection with Karsen. We get to go to baby group one last week and then off to the big leagues. I'm ready.... I think. 

I've been a bad mommy and haven't been putting Karsen's AFO and SMO on him enough. So, back on they go for at least 2 hours a day. The reason he needs to wear them more constantly? He can over stretch the inside of his ankle because of the incorrect position of his foot. The poor kid, his AFO and SMO, his thumb splint, and his eye patch. Geez. I think that's why I have been slacking. I just wanted him to have a break and be a kid. This will all help him in the long run. 

Karsen and I have been getting very frustrated (him more than me) with his lack of being able to communicate with me. He hasn't spoke a single word yet. He understands a lot, he just doesn't know how to communicate back to me. Sign language has been hard since he only has the function of one had and every sign seems to look the same. It all can be very frustrating. Although we had a huge break through the other day. When Karsen was eating and started to getting fussy, I asked him if he was all done, with sign launguage too. Guess what? He signed it back! I got so excited and so did he (that I understood him). We still have a long ways to go, and don't get me wrong it was still a rough feeding session, but it's a start. To help him communicate in a way we can understand, we have been looking into communicative devices. They aren't cheap, but a huge thanks to some many people that were a part of Karsen's benefit, Karsen will now be a proud owner of a communication device (aka Ipad). Thank goodness for technology. It's amazing how something people use for every day is also a communication device. Huge, huge, huge thanks to everyone that helped up make this purchase happen. We wouldn't be able to get this for Karsen if it weren't for all of you. 

Karsen eye doesn't seem to be getting any better with the eye patching, in fact it seems to be drifting more often. :-( You can see in the picture below, his right eye is drifting in toward his nose. Thankfully we have an appointment next Thursday with his Ophthalmologist, down at Stanford. This is the first trip down there I will be making solo. Ok, actually not solo, my sister is coming along for the ride. My husband has been so kind to take time off work for every appointment Karsen has had down there. Karter will be in school so I figured I could handle this long day without the hubs since it's just one rug rat. Let's hope.... :-/

Karsen's eating is coming around. Slowly but surely. He's starting to chew, which is huge. He's starting to feel like a toddler which makes me kind of sad but so proud and excited.  

He amazes me every day. I have a new appreciation for life thanks to my little man. He's the happiest baby ever (with the exception of the feeding fits) and after all of the things we have to put him through he's still happy.