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. 

I could do without Witch

If you've been following me, then you'd know about my chit chat with the lady at the grocery store. This is similar.... but it's worse, much worse. Are you dying to know yet? My blood still boils when I think about it.

A couple of weeks ago I had someone say some pretty hurtful things to me. One word in particular that irks me every time I hear it. For the sake of identity let's just call this person Witch. ;-) 

Karsen and I were out running errands when I ran into an old coworker who I hadn't seen for a while. Our conversation started with the usual small talk, and then she asked me how Karsen was doing. "He's doing great! Seizure free for 6 months." 

The question that came of her mouth after was just the tip of the ice berg. "So, is he retarded?" Yep, that's right. She asked THAT. Oh, how that word makes me so mad. I was so shocked but still determined to explain to Witch how clearly ignorant she is. 

"Well, I'm not really quite sure what you mean by that, but we aren't sure if he is cognitively impaired or not yet. We are grateful he is alive, well, and so happy" So, I thought that would be the end of it. 

I thought wrong. "Oh, that's good..." I don't think she really was paying attention to my response. "...because we have enough retards in this world. We don't need anymore." I still to this day don't have any words for Witch. I think I am still in shock that someone would say that. The conversation went on for about 5 more minutes about how she would abort her baby if her doctor told her it was retarded, and how retards are the people that are murders and kill other people. Yep, I stood there for all of that. I didn't even attempt to say anything back. I just said good bye and walked away. When I got in my car I didn't know what to feel. I was mad, hurt, sad, shocked. The reality is, people are uneducated. They make rude, off hand comments with out thinking about what is really coming out of their mouth. I guess in some situations some people just flat out don't care if they are hurting anyone. I even remember Witch, at one point, saying "I know I'm not politically correct, but what else do I call them?". Really?! There are enough of YOU in this world, we don't need anymore witches. 

The biggest thing I realized after this little event, is people don't even know what the word retard means. (I even hate typing it.) If you're curious you can even look up the exact definition here. For any mother of a special needs child that word hurts. When I hear people use it so casually it makes me cringe. Again, I am not perfect and also used this word causally (past tense, I don't anymore). Using the word to talk about someone you don't like, or a homework assignment, or a companies policy. Are you following me? 

So, please replace that word in your vocabulary. Don't use it so casually, and don't use it to insult someone. My words to replace it? Ridiculous, absurd, not cool, or awful. 

What are your replacement words? 

Sports Illustrated 2012 kid of the year

This video blows me away. I was in tears. This boy, this brother, is the best brother Caden could have asked for. I'm bound and determined to raise Karter in the same way. 

AFO and SMO update

Yesterday Karsen had an appointment with his physiatrist. If you don't know what a physiatrist is, here ya go. We've only met with his once before, which was over 6 months ago. Karsen wasn't doing much at all at that time. He wasn't rolling, he wasn't sitting, he was only breastfeeding and he still was having seizures. Our appointment yesterday went really well. He was shocked at how well Karsen is doing. With his seizure history he didn't think he would be as far as he is. We talked a bit about botox and decided that he wanted to wait a little bit more so we can do injections on both his leg and arm at the same time. No real point in doing the leg now since he isn't walking. His orthotist was also there. Here is where you'll find what an orthotist is. He checked Karsen's thumb splint, which is finally working the way we both want it too, he also check out his AFO and SMO. Holy smokes! The kid almost out grew them in less than 3 months. The cool part? The company that makes his AFO and SMO will make a whole new set if they out grow their current ones within 90 days. So, we get a new set, which hopefully will last him longer, for free. I went with the same blue camo, and blue straps since we really didn't get to enjoy the fun print on the last ones. 

With the skew of changes going on with our EI program I've been feeling thrown off my game. I'm sure many others have been as well. We have upped the anti on Karsen's therapy with his other OT and PT. We'll be going there 3 times a week. Then 2 times a week with our EI therapy. Tomorrow Karsen and I both will be taking a break since we both are sick... :-( and we will miss our sweet Mary Beth. Thankfully we get to have a make up session with her. I think in place of our session with MB tomorrow, I'm going to focus a lot on sensory play with the boys. It's easy, fun (although there is always a big mess), and doubles for a therapy tool. 

My sweet sweet little man, stop growing so fast!

Budget cuts

Let me start off by saying I hate budget cuts. I really don't understand why it seems to always come out of school and funding for special needs programs. Well, yesterday we got some good news and some heart breaking news. One of the programs Karsen is in, it's an early intervention program (EI), for kids under the age of three that have a developmental delay, got combined into the school system. So as you would know, the school system is getting hit with quite a few budget cuts. I understand money needs to be cut from some where, but why does it have to be from our future? I wont get into that right now, maybe another day. 

Anyways, I found out that we will be getting to see Mary Beth at our play group therapy sessions! Woo hoo! So, since we see here every other week at home that means some weeks we get to see her twice! Now, on the down side? One of the OT's from group therapy got cut from the infant program. When I heard this, my heart broke. She has a strong back round in feeding therapy and has helped me and Karsen through many struggles of eating. She has been with the EI program for 24 years! She is a wealth of knowledge and will be missed greatly. The hardest part about this? No one saw it coming. She was a lot of family's home OT, like Mary Beth is to us. Those families didn't get any warning that they would be switched to a new OT. It takes a long time (at least in Karsen's case) to get comfortable and established with a new therapist. My heart hurts for those families. I started crying to Kuper and told him that I wouldn't know what to do if that happened with Mary Beth. Thankfully, in the skew of texts back and forth with Mary Beth, if that ever happened she'd still come and see us.

 With all of this brought up, I am dreading the day we have to say good bye to the EI program when Karsen turns 3. These people have helped us through some very hard times and have help not only Karsen grow but me as well. We'll cross that bridge when we get there.

Today was back to reality, back to the old grind. We hit up our OT session with Mr. BO who was surprisingly not smelly (maybe someone gave him a Stink-o-gram), Karter is at preschool, in a few minutes we will be heading to group therapy. It will be bitter sweet. I am so excited to see Mary Beth but also sad we never got to say good bye to feeding therapist. (Tom, Mr. BO OT, is most likely going to offer her a position at our other therapy program, fingers crossed that it works out)

My little man hard at work.(he looks so miserable, right?! ;-))

Blocked

A dear friend and her two kids, who are perfect play mates for both kiddos, came over yesterday. Her oldest is just two months older than Karter and her youngest is just three months younger than Karsen, perfect! 

As we chatted we began to talk about how we forgot about this ugly stage we are currently in with our youngest little ones. You know, the one where they throw food, hate diaper changes, and don't understand you when you tell them no? That ugly stage. I think we had both unknowingly blocked that from our memory. In fact, Kuper and I were talking the other day about Karter and how he went through a stage of throwing a complete fit during diaper changes. I mean common, we do this 6 times a day, it's nothing new. But yet they both have done it. I've been so wrapped up with cp talk, sensory issues, behavioral issues that I forgot to even step back and realize that it's typical age for him. I get frustrated at myself for not realizing it was normal. Yes, there are many things that are cp related that he does but some of his things are completely normal. I have put so much pressure on me, and on Karsen to get through certain stages, certain habits that I just assumed they were cp related. This three week break has been just what Karsen and I needed. I needed a chance to step back away from therapy and just enjoy my boys for just that, my boys. We will be back to the grind next week, which is quickly approaching. 

I was bound and determined to get Karsen to cruise (walk along furniture) before he saw Mary Beth that I forgot to let him be a typical 17 month old and just play. So, no he wont be cruising when Mary Beth sees him next, and I have let go of the guilt. He will move at his own pace. I will never get these times back with my little man. He's quickly approaching toddlerville and it's so bitter sweet. Of course, none of this means I am stopping pushing him it just means he too deserves a break. I know he is one smart cookie and he is capable of amazing things, but we all deserve to just play every now and then. And so do you! Ignore the therapy, ignore the dishes, ignore the dishes for one day, heck maybe even two.  In stead, embrace today, play until you drop. Enjoy!