Goodbye 2012, hello 2013

I couldn't be more ready for 2013. 2012 Has been a whirl wind and has been, hands down, that hardest year of my life. I've learned, and grown so much and have met many amazing people along the way. Although this road has been rough, it's also been enlightening. 

Let me give you a little recap of 2012:

Realized something wasn't right with Karsen

Karsen got diagnosed with cerebral palsy at 7 months

Karsen got diagnosed with infantile spasms (type of seizure) just 3 weeks later

A huge benefit concert was thrown for us (I'm blown away by the support we have gotten from this amazing community

Karsen's seizures stopped after three different med changes

Celebrated Karsen's 1st birthday even though he couldn't eat cake

Karsen started sleeping through the night (*insert happy dance here*) at 14 months

Celebrated Karter's 3rd birthday

Karter started preschool and LOVES it

Karsen was able to go medication free and be seizure free

I completed my first marathon

Karsen hit 6 months of no seizures

Wow! What a year! I'd have to say, the good greatly out weighs the bad. Like I've said in one of my posts before, there is good in every bad, it may be small but it's there. At the start of 2012 Karsen couldn't roll over, he couldn't sit up, he was little but also behind. Now??? He rolls all over the place, sits up and gets to sitting up from laying down, butt scoots everywhere, will walk if you are supporting him, and his newest? Pulling himself up to his knees. On top of that, he's cut bottles out completely and is officially on nothing but sippy cups. He's still having a struggle with eat/chewing but I couldn't be more greatful for that he's never needed a feeding tube. Hard work pass off. At some point I want to make another video of Karsen, one to put in after his first video showing the start of his journey. You know, in my spare time and all. ;-)

From Mary Beth, Karsen's OT to Rachalle Smith, a fellow high school cheerleader, there are so many of you that have touched me so deeply. You may have just sent me a simple message or left one small comment, the small things can make a big difference. I became bound and determined to make my blog a place to educate people on the real life of cp. Little did I know that it would become such an important outlet for me. I've even met some cyber friends through it all and had a guest blogger, Heather, who has also helped me on rough days, even though I'm sure she doesn't know it. ;-) She does now!

In 2012 I have learned not everything is what it seems, a lot of people don't know what cerebral palsy really is (if you don't, a fellow cp mommy made a beautiful video about it on my post of CP-what I want you to know), MANY people don't know what infantile spasms are and how serious it can be (read this post about infantile spasms if are one of those people), and even though the world may seem so messed up and cruel, there are so many beautiful people left. I'm talking about the inward beauty. That person that smiles at my boys in the grocery store and tells me how blessed I am (not the lady that spoke out about Karsen's drool.... grrrr.... I'm still holding onto that one and need to learn to let go), the car in front of me at the Starbucks drive threw that paid for my drink, the person that drives around with a smile on her face, the stranger that gave us a pile of ride tickets at the fair, and the teenage couple that gave Karter a stuffed animal at the fair as well. I cling to those beautiful memories, those little things that brightened my day. 

So what can we do to make 2013 better? I plan on smiling while driving (Ok, most of the time), letting the lady with 10 items in her shopping cart go before me, hold the door open for someone regardless if they need it or not, be less grumpy and more friendly. Who knows, it could spread like wild fire. Enjoy the little things in life. 

2011

2012

Adjusting to AFOs SMOs and thumb splints

Karsen's new thumb splint came in about a week ago, finally. It's exactly what he needed. The small ones they were putting him in before, the mckie thumb splint, was not enough support for him. This new one he has, a benik, has thermaplastic stay that gives him much more support. He has never seemed to mind me putting on his thumb splints, which I am thankful for. We use is mostly when he is practicing cruising, walking, weight shifting bench sitting, all the big muscle group stuff. When is comes to fine motor we don't wear the thumb splint. I want him to be able to feel all sensation in his affected hand and the thumb splint obviously covers some of his hand up. So I think we have a good routine going. 

Karsen has now decided he doesn't like me putting on his AFO and SMO. It does take me a bit, not as long as first timers, but probably longer than he would like. It has seemed lately that Karsen doesn't care for them much. He's fine if he's distracted by toys, and walking but the minute he has a second to look at his feet he remembers that they are on. We are hoping that he wont always need an SMO. Once he has got walking down then hopefully he will stop pronating his right foot so much. He is growing so fast, his PT thinks his AFO and SMO will only fit him for another month or so. Geez! (When I've read other blogs I've always tried to do the math of what age their baby/child is at when they talk about milestones, so I'll plug that in for you. ;-) ) Karsen will be 17 months on the 23rd. Where did the time go? Obviously most typical babies are 17 months, walk, say a few words (or if you're our oldest Karter you say a lot of words, I have no clue where he got that from ;-) ), eating like a champ and drinking from pretty much anything. So, as you can see, all around, we have some lag and that's ok. We are working at Karsen's pace here, after all it is his life. I don't want to rush him to do anything he isn't ready to do. 

No, he isn't walking yet and I don't anticipate that happening soon. As far as new milestones he hasn't hit any in a while since everything that is next, like walking, cruising, pulling up to standing, getting back down to sitting, are all very big things so it's going to take him a while. I am ok with that. In fact, I'm thankful he really wants to be balance before he starts walking, the last thing we need is another trip to the ER. He can butt scoot like a champ and can get around almost anything now. He isn't crawling, but he's way more comfortable with tummy time and getting out of it and into it. 

We have been focusing a lot of food therapy lately. Trying different textures, encouraging him to self feed, and of course drinking out of a straw. He still doesn't have chewing down at all, so that makes the list of food very limited for him. I have, however, found that he likes corn, which he can self feed. He also likes cottage cheese mixed with apple sauce. He's almost done with bottles. Yesterday he didn't have one at all, he's got the sippy cup down! I'm very proud of how far he has come and can see the light of full self feeding but the light is far. His eating therapist reminded me, "not every time he eats is a therapy session, give him a break." Oh boy did I need to hear that. 

We are still patching his eye. If you missed on what's going with his eye, here's quick update. His right eye drifts inward which is officially called a strabismus. Its when the muscles in the eye are weak, therefore causing it to wander in other directions rather than straight. So, to help strengthen the muscles in his right eye, we eye patch his left eye for an hour every day. He does pretty good with it, doesn't complain much when I put it on, taking it off is another story. We have an appointment in January to see if the eye patch is enough or if he'll need surgery but his ophthalmologist is confident that patching him will be enough. 

He's been trying to communicate with us much more now. He waves all the time now, if you tell him "nite nite" or "hi" his whole arm will get going sometimes. He started reaching for his milk and grunting at us the other night during dinner, simple I know but huge for him to make the connection. One day we will have words. I've found, from my support group, that a lot of people have their little ones in speech therapy at 12 months of age. I don't see how they could help Karsen at the point he's at right now. Not that they wouldn't help him, I just think anything they could do for him at this point I can do. I don't need to throw in another weekly therapy appointment. At what point do you decide that the amount of therapy they are in is too much or not enough. It's a hard line to walk. There are some weeks I think that we could do maybe one more PT visit a week, and she would let us if we could, in fact his PT is always trying to see us right after his OT on Tuesdays. But at some point you need to let a kid be a kid. 

We are coming up on Christmas break over here, which means no school for Karter and no therapy for Karsen. What the heck am I going to do with all that time?! And of course if I don't do enough of therapy at home myself I will have serious mommy guilt. So, I'm setting up a schedule for the next two weeks (this week we only have PT on Wednesday so I will be doing extra with Karsen while Karter is at school.) of times that I will be setting aside for hand play with Karsen, walking/bench sitting, and sensory play. Now the plus side? Karter loves the sensory play too. The hard part? making sure I'm dividing my attention up evenly. I'm going to hop on my pinterest and print out all those fun home schooling ideas that have just been sitting on my board and do a bunch of them. You know, the ones with the science experiments, and cute craft things with hand prints and thumb prints. We'll probably do a bird feeder or two since we have all the left overs from last time, plus I love seeing all the birds on our property. I know Karter is going to love it. So, that's my mission. Stay busy. Because if you know me, you know that me staying home with out a crazy schedule is going to make me go bonkers. :-) Any fun crafty, at home, kiddy fun ideas you have, spill 'em.

My silly boy. He was playing peek a boo with his beanie but couldn't get it back over when he was done. 

Six months seizure free!

Yesterday marked six months of no seizures. I really didn't know if I was ever going to be able to say that. I'm so happy the seizures are a (not quite distant yet) memory. 

As I sit here today I can tell you one thing, six months has not put me at ease, in fact it has done the opposite. Every day, I wait for them to return. I watch Karsen like a hawk, waiting to see the next twitch, spasms, or worse something new. Unfortunately the chances of Karsen staying seizure free for life is very unlikely. When you've had IS, they typically return in a different form. The good part? They don't return as IS. In the past six months I have poured myself into research even more than before. I want to be prepared. I want to know what drug is next, what would be the best, what has the least side effects. You can never be 100% prepared for seizures. Regardless of the type, they are scary. No one wants to see their child 'shut off' for a few minutes, or in Karsen's case his IS would be for 20 minutes sometimes. I recently found out from a fellow hemi mom (who's son had IS too), her son gets routine EEG's to make sure the IS hasn't returned. After talking to her for a few minutes my wheels started turning. How did we get from 'If this drug doesn't work then we need to look at a hemispherectomy as the next step' to 'We'll see you in June'. For those of you that don't know what a hemispherectomy is, it's where they would take out the half of his brain that is causing the seizures. Crazy, right? What's even more crazy to me is that kinds can function with just one half a brain and be incredibly bright and on it. I was told Karsen's EEG's will never come back normal and have never been normal. Which is what puts him at high risk for other seizures. So, why are we going so long with out checking? 

I wish we could see a doctor who is a stroke/epileptic specialist. I'm sure those are even harder to find than a neurologist. I'm strongly considering switching neurologists. It would be nice to have one closer and one that I don't have to work through the NP to get to her. *sigh* I can't just sit here and complain though. Karsen's current neuro has been great. She always takes her time when we are there. I think I am just mostly unhappy with the staff there. When we couldn't make the appointment earlier this month, we were told our rescheduled appointment was made for in June. What?! Ok, so maybe if we get in with a different neuro we could actually get seen sooner. It makes me feel uneasy to go that long with out Karsen getting another EEG to be safe. Again, I'm probably being paranoid, but wouldn't you? 

We've been doing so good. Karsen has been surprising us all with all of his accomplishments. I just don't want to go back there.You know, the ugly place with seizures and meds that don't let you sleep, the place where you cry in public because he's been spasming for over 10 minutes and you just want it to stop. So, instead I'm here; the place where I research, and sleep with one eye open at all times. This place is much better than the first, but I still have to take it one day at a time. 

So, yes, six months seizure free. Will it always be that way? You can probably count on it not, but I think it's safe to say he is out of the IS radar for good. Woo hoo! (~insert happy dance here~)

One of their favorite things to do in the car (besides ripping toys out of each others hands and making me go nuts). Every time I think I'm going to move their carseats appart they do this. How can I move them when they do this???? 

Filter? What's that?

The other day, I was at the grocery store with just Karsen. Karter was at preschool so I took the opportunity to head to the grocery store with just the little man. As most of you may know by now, I'm a very open book.... or maybe you could view it as an open blog...lol. If you ask me a question, 99% of the time I will answer it with no hesitation. When people have asked me about Karsen, I don't skip a beat. I guess I've gotten use to it, all the questions, the stares, the awkwardness. Well, one thing I don't have tolerance for is ignorant people. 

I always thought I had a really good filter. I'm never one of those people that speaks up when someone cuts in line, I'm the pansy one that complains about it out loud in hopes they will feel guilty. I'm not at all like my sister in this way, she's the one at Breaking Dawn Part 1 opening night, putting tweens (and their not so nice moms) in their place when they tried sqeezing their fifteen extra people in front of us with a friend that was already in line. In fact I think her exact words were "No, no! I don't think so! Back of the line!" I was dying! Cracking up and turning red all at the same time. I love her for this. I wish I could be more like her at times, her go get 'em take no crap from no one attitude. 

Well, a few days ago I had my taste of it apparently. I don't know what got into me. While waiting in the check out line, the lady in front of me started to say hi to Karsen and therefor noticed Karsen's excessive amount of drool (the drool comments really get to me). Then this came out of her mouth, "That's not normal drool. That's not just teething drool. There's something not right." My response? I stared at her blankly and blurted "He has Cerebral Palsy" a brief moment passed and a little bit of sass popped out of me. "Do you feel stupid now?" What?! Did I really just say that out loud?! Even still, to this day I am shocked that I said that. That poor woman, but common, really?! How dare she say something like that. Maybe now she'll think twice before she opens her mouth. I know I will...eek! Ugh, I feel awful. Sorry lady. It wasn't my day. But really, am I sorry? Should I be? Or should she be sorry? The comments complete strangers make blows me away. I think it shocks people that actually use their filter. These people, the filterless (yes that's a new word), end up saying things that the majority of the time hurt people. So I've decided, instead of going home and being sad that someone noticed Karsen isn't 'normal' (HATE that word) I will be turning my filter to 'light'. That's right people. I will no longer hold back ALL the time, and when appropriate I might make someone feel stupid for saying something they probably shouldn't have. Care to join me?

If you're needing a CP break and want to read something light, and funny by two very talented writers, here is where you need to go. My sister, Stephanie, and her hilariously, daring friend Julie are a nice nice change of pace. Enjoy!

My super supportive sister, who watched me cross the finish line at my first marathon. She's an amazing sister, best friend, and a phenomenal auntie, and did I mention her filter is set a the perfect setting? ;-)

Difficult discusion

I've been having this battle with Karsen's PT. Ok, not a battle she knows about. So, I guess I can't say it is a battle, it's really something I need to talk to her about but just don't know how to say it. Let me catch you up to speed.

Karsen's OT, Mary Beth, and I are on the same page with Karsen. The things we are currently working on Karsen with is getting up from a sitting position (bench sitting) to standing using his glutes, and also weight shifting in his hips to help start walking. Karsen is VERY affected in his arm, not as much in his leg, because of this he doesn't crawl, he butt scoots. He scoots everywhere, and he's gotten quite fast. For whatever reason his pt is hung up on trying to get Karsen to crawl. He just wont! I know it's not going to happen. Ok, let me rephrase that, it's not going to happen until he's much older, like say after walking... Now you may be thinking 'Don't think that way, he will crawl, let him prove you wrong' Let me tell you why he wont. He's one smart cookie. Making him crawl now would be like making a toddler (who skipped crawling and went straight to walking) learn to crawl. Why on earth would they want to crawl when they know how to get places much faster and more efficient walking?! So, do you see my point?  I wasn't really truly aware of this being an issue until Mary Beth was asking me what his PT was working with him on. Keep in mind, Mary Beth has worked with kids with CP for years, I trust her knowledge and her judgment. So, I'm trying to figure out a way to talk to Karsen's PT about not pushing him to crawl anymore, and moving on to other things. I have started to feel like the appointments are a waste of our time, since I do way more with him at home in the right areas. I don't want to tell her how to do her job, but this is my child we are talking about. I don't want to offend or make her made, we have to work with her for quite some time. Don't get me wrong, I really like her. She is super nice, and seems to know what she's doing except for this one part. I'm not sure if it's because she didn't see Karsen from the start or maybe she hasn't worked with hemi cp kids before, whatever the reason I need it to change. Any words of advice? 

On a much lighter note, Karsen drank from a straw today!!! Woo hoo! Like anything before he may have done it today but that doesn't mean he's solid on using a straw from here on out. He always takes a good month or so to really get comfortable with something new. He also started waving hi. If you say hi to him, his hand goes right up in the air. Still no words yet, but he is understanding more and more. When asked, he'll shake or throw a ball. He'll also take things out of baskets and put them in or on. So, we're making steps here people. They may seem little to you, but they are pretty big over here.

Oh, and did I mention he'll play peek a boo now?

(sorry for the me shot in the beginning, the hubs was shooting this one. and yes we were in subway and yes my oldest said "I'm going to beat you".... He's in the 'I win!' phase. He also asked my brother in law an interesting question the other day "Uncle, Do you beat auntie?" OMG! This kids crack me up!)

Stuborn

Karsen has been really resistant to eating anything healthy. I know it sounds silly but it's true. He has no problem eating graham crackers, cheerios, gold fish, basically any cracker form. When is comes to fruit or veggies, they get thrown on the ground, and me being persistant gets it thrown at me and also gets to witness a full blown temper tantrum.  It makes for a really fun dinner.... eh. I'm feeling a little overwhelmed with it and don't know where to turn. I'm constantly worried he's not getting enough to eat. I really believe it's a texture thing, and the lack of sensation in his mouth. We've been working with a eating therapist at group which has helped him learn to actually eat food and not use his thumb to suck down purees. He's officially off baby food, and I've even tried to give it to him time and time again so he'll at least have some healthy food to live off of, but he wont even touch it now. I'm hoping we can talk to someone about it his issues and get some answers or help. 

Karsen is doing great. He's more and more comfortable moving around. I watch him pancake himself to the ground (boy is he flexible) and get up with ease. He's still butt scooting every where, and he loves walking around the house when I hold his hands. He's nearing 6 months of zero seizures!!!! Drug free, and seizure free. I didn't think that would ever be something I would ever be able to say. We still have yet to hear any words, but he is understanding more and more of what we are telling him every day. We are STILL waiting for his new wrist/thumb splint, and I fear I have to be a squeaky wheel again. Ugh. 

I took the boys to go see Santa over the weekend, Karter was so excited and immediately told Santa he wants race cars, Karsen..... well, you can see for yourself. I couldn't help but laugh. Everyone has to have one of these in their album. I actually had to swipe him pretty quick, he was back arching and slowly sliding down Santa's leg to get to the ground. 

Change of parenting

Last night I went to my usual once a month MOPS meeting. I got to see and catch up with a few friends, partake in the cookie exchange, and listen to a great guest speaker. The guest speaker was a kindergarten teacher. Her topic? Parenting. She mostly went off the book of  "Parenting with Love and Logic". I've read most of this book already so it was nice to have a refresher course. As I sat listening to the do's and don't's I began to realize how much my parenting has changed. If I were to back up to when Karter was 16 months and compare him to Karsen, I parented him very differently. I'm by no means saying this is bad, in fact I think the opposite. It's important to know you have two different children and what works with one may not work with the other. One of the subjects that was brought up last night was food throwing. This is a hard one for me right now. I do not think it's ok to throw food, ever! Karter passed through this stage very fast. Karsen? Well, it's really his only form of communication to tell us he isn't hungry anymore. Not a fun way to tell us but I'm just happy he's communicating. I think I'm making it sound like I just let him throw his food... not the case. I still tell him no throwing and have recently started trying a 'No' bowl, so when he's done with food or doesn't even like it from the start he can put it in the no bowl. He still doesn't understand it and in fact he just wants to dump the food out of the bowl once it's in (his favorite thing to do right now is dump things out of bowls, boxes, anything) but I think some day he will. Raising a 'normal' (I hate that word) child is SO different than raising a special needs child. The typical temper tantrums aren't your typical temper tantrums. I can see the frustration on Karsen's face when he throws a fit. I can see he wishes he could just tell us, which breaks my heart. Yes, we have come so  far. I we back up 6 months Karsen was just starting to sit up and was still 100% breastfed, and lets not forget he was still having seizures. But the biggest thing I have learned with raising a special needs child? Roll with the punches. Just when I get the hang of things, Karsen does something new that throws me for a loop. 

Learning to raise, parent, teach discipline Karsen is different but it's not. Keep up with me here. I've found he's failure to communicate makes it that much harder to understand him, but I've also found that his body language is the biggest communication tool he has. So, different? Yes, I just have to look deeper. The same? Yes, he's still a kid, he still wants the same thing in life, I've just realized the temper tantrums aren't for no reason or just because I told him no, that's him telling me something, telling me he's hungry, or that's not what he wants to eat, or he's thirsty. 

Roll with the punches people, roll with the punches. 

The boys having fun at therapy.

Huge steps

Well, I did it. Yesterday I finished my first ever marathon. The weather was nuts! The head winds got as strong as 55 mhp, and it was raining for 3.5 hours straight. It was tough. People running at a much faster pace were quitting, people were walking, and boy did I want to do both but I finish. I finish at 4:45 (maybe a little less since I didn't cross the start line right when the timer started. I couldn't be more proud of myself and so happy that I followed through. My amazing husband was out there swapping bottles for my fuel pack and handing me Motrin when I needed it, seeing him ever 5 miles or so gave me small bursts of energy every time. Two of my friends were there also, braving the crazy weather, huddled under a giant umbrella and still getting soaked. Cheering on my and my two friends at mile 10, 20 and the finish line. My Dad and sister were waiting at the finish line, and my poor sister ended up injuring her ankle in a rush to get to the finish line before I did. That's dedication right there. Love you sis! I was impressed by all the people out there supporting us. It was not easy weather to run in let alone stand in not getting warm. Oh, and I can't forget, Karsen's OT, Mary Beth was a little after mile 1 cheering me on. I'm so incredibly blessed to have so many people supporting me and encouraging me. I ended up running the last 10 miles with a random stranger who was no stranger to marathons. He literally helped me shave off 10 minutes off my time. He also happened to be a physical therapist that worked with kids with CP. Ok, God, there are no mistakes, thank you for putting this person in my life temporarily. It's the small things that have such a big impact. 

 This picture doesn't do the storm justice, it was straight up gnarly.

My awesome, soaking wet husband and I, when the sun came out right at the finish.

In other news.... Karsen has taken his first official assisted steps. He will no walk if I am holding his hands. He's no where close to walking independently but it's a huge step in the right direction. The best part? He loves to do it. Every time we stand up now he starts to get really excited. He also started pointing to his food when he wants more and waving 'nite nite' to us. He's starting to communicate!!!! Finishing a marathon wasn't enough for our family, lets throw in some assisted steps while we're at it. So proud of my little mans hard work. Here's the second time he walked assisted.