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.

Change of pace

Today I wont be talking about Karsen, ok, maybe I will a bit. But today I will be talking about me. Why? Because my life and journey isn't just about Karsen and his CP or seizures. My life is just that, my life. 

In exactly two days I will be running my first ever marathon. And of course the weather could not be better, NOT! I was starting to panic a bit and stress out about the weather but bottom line, I'm just going to have fun. Yes, I will be drench, tired, and windblown with thousands (yes, thousands) of people, but I know it's going to feel so good to finish. I signed up for this marathon originally because I was on a runners high after my first half marathon. The training quickly became my outlet to kid free me time. I didn't realize how much I needed to get away from the therapy, the schooling, the appointments, all of it. Nothing but you and the pavement (and my music of course). A recent weather update is making me a tad nervous. Watch for yourself.... oh well, time goals are out the window and I'm officially running it to have fun and finish. Boy am I ready for the training to be over. I didn't realize how much training really went on when you train for a marathon. Like I said, I have done a half before which I trained for all of 8 weeks, easy peasy. For this one I have been training since late August. That's a long time to stay committed to an exact running schedule. But let me tell you, it has kept me in check mentally and physically. 

Wish my boys could see me cross the finish line, but the weather is just not kid friendly. Wish me luck!

BRING IT ON CIM!!!!!

Oh and let's not forget Kuper's company Christmas party is that evening.... whew, I'm going to be one tired cookie!

This was the start line last year. See, thousands of people.

Attitude adjustment

"You need an attitude adjustment." Words spoken from my parents mouth often when I was younger. You know, the age where you hate your parents and never want to spend time with them and don't understand why they wont let you go to your friends house after you didn't clean your bedroom age. Yeah, that one.

Well, Karsen is apparently 16 months, going on 16 years old. *sigh* He's in serious need of an attitude adjustment. Karter never had this problem. Maybe I got lucky and Karter was a super easy kid, and still is. But my gut is telling me it has to do with his CP. I think a huge part of it is his inability to communicate with us properly. I really honestly think he is getting frustrated. He tries to hit Kuper or I out of the way, lets not forget Karter too. He throws food off of his tray, and I don't mean some food, I mean ALL of his food. If I give him food that he doesn't want, which I have to quite often since one cannot survive off of graham crackers alone, he will scream/cry and fling himself into the back of his high chair over and over and over again. I'm thankful he seems to only do this at home, in public I'm sure I would get the 'Get a handle on your child' look for many people. Oh and don't let me forget how he throws a fit EVERY time we change his diaper or clothes. Karsen hasn't spoken any words yet, and I'm not sure when he will. He understands somethings, like when we ask him to dance, or ask for a kiss, and plays peekaboo. He doesn't know how to wave goodbye, if you ask him where a body part is he has no clue what you are talking about, and the biggest thing is he doesn't know how to say or sign or shake his head yes or no. He used sign language once with us (more), but I don't believe he knew he was saying "more" rather than mimicking what I was doing and helping him do it. Maybe this could be a sign of Aphasia, I'm not sure.

We have an appointment with our neurologist next week, so I will be bringing up all of these things to her attention. I'm not even sure if there is anything that can be done that we aren't already doing, but it can't hurt to ask. Patience. Something that doesn't come easy for me. I will buy my husband a Birthday or Christmas present  and can't even wait a few days to give it to him, so I end up giving it to him right when I get home. I know, silly. But really, I have no patience, it's never been easy but it's something I'm learning to work on. Karsen is making sure of that. 

I'm so very grateful for the huge strides he has made in the last month. I am so happy he was able to eat some of the Thanksgiving food. I'm ecstatic that he can drink from a sippy on his on. I'm just having to learn as we go, that there is much more to his CP than just a motor skill problem, it's so much more complex. 

One day at a time.

Enjoying snuggles while eating a graham cracker with frosting.

Thankful

With Thanksgiving coming, can't believe it's tomorrow, I have been mental noting what I am thankful for this year. The list is never ending. I feel so incredibly blessed to have so many amazing people in my life. First there are two, actually three, obvious blessings in my life (no I am not pregnant). My two amazing boys and my fabulous husband. I have moments where I just cry knowing how blessed I am to being apart of their lives. Three is three things I am especially thankful for this year. One being our amazing OT, Mary Beth. She has turned into a close friend, and someone I would trust with the my children in a heart beat (that says a lot). I know Karsen wouldn't be as far as he is now if it weren't for her helping him one on one or her teaching me how to help him. Two, my best friend Brittany. Cheesy as it may be, she is my soul sister. She knows me like no one else. We have bond that no one can break. Her family, her boys, all have a very special place in my heart. I don't really think she understand the impact she has made in my life, and how she has helped me to be a better mom, a better wife, and a better friend. And last but not least, I'm thankful for you guys, for those of you that have kept me going, kept me blogging. My goal was to help others in hard situations, find strength in themselves and know they aren't alone. Not too long ago I was contacted my someone that doesn't know me at all, no through connections, or Facebook. She found my blog because of a google search (you know who you are ;-)). Her friend is going through the same journey and start that I was at not that long ago. THIS is way I do this. Here I sit, crying, thankful for her search, thankful for my purpose, thankful for all of you. Weather you came here to catch up on Karsen's progress, or trying to get therapy tips, or just finding out about CP diagnosis, I hope I have helped you in some way. I hope I have helped you find the good in the bad. This year has brought so many trails in my life, but so many great things have come from it. So yes, I am thankful for you!

Oh and one more thankful item..... How could I forget this.... 5 MONTHS SEIZURE FREE!!!!!

Here's some pics I found from this time last year. (before we knew about the IS and CP)

My Sweet boys!

Med free, seizure free

It's official, Karsen is off his medication 100%! A light bulb has just gone on. I'm so excited to see his true colors shine. He's got such a personality. Every time Kuper walk toward Karsen with his breakfast, Karsen starts freaking out and gets really excited and starts scooting straight for him, it's pretty cute. The best part? Not a single seizure. (He's also no longer constipated, didn't even cross my mind that was a side effect of his meds)

His eating has taken off! Tonight he even ate mac n cheese. I couldn't believe it. He is now drinking out of a sippy cup fully on his own. I think we are probably a month away from being done with bottles. Although, he only gets it right before bed and lately has only been drinking 4 ounces out of it. He used sign language for the first time a few days ago. He signed 'more', not only was I excited he communicated, but he used BOTH hands! 

He's starting to tolerate his AFO and SMO more now. He really just doesn't like me putting them on, otherwise he doesn't really care. He's got some pretty cute DC shoes to go with them. He looks like such a big boy with them on. His foot is back to normal, kids bounce back so fast! So, we've been working a lot on standing. He will stand for a good 5 minutes if he has a wall behind him for support. However, today he stood on his own for 2 seconds, 2 seconds people!

Karter and Karsen really started to play together over the last week or so. Karter always brings him a toy in the morning, he's so sweet to him (when he wants to be) and other times a true brother. It makes my heart so happy to see them play together and take toys from each other and get mad at each other. I know weird. But they are being true brothers.

This week is a nice break from the therapy chaos. Since both of his therapy places are close this week we have no therapy at all. Of course, that doesn't exclude me and what we do at home ;-) but it's nice to not have to go any where. I'm ready for the holidays, good food, fun company, and our start of Christmas traditions the day after Thanksgiving. I'm also less than 2 weeks away from my marathon, so it's nice to start tappering and not have to worry about my runs as much.

With that said, I couldn't be more excited about the weekend of my marathon. Not because of the race, I'm actually pretty nervous about that, but because my parents are taking the boys over night for the first time. *insert back flip* and they'll watch them the whole day of the race. Not only do we have the race early morning, but the evening is Kuper's company Christmas party. I am pretty sad that we will be missing out on taking the boys to the Christmas parade, maybe my parents will end up taking them. 

Karsen has two appointments coming up, both on the same day. One with his neurologist, which I am sure is going to be very routine, and the other with his ophthalmologist to check on the progress with the eye patching.  I'm pretty confident that both will be a breeze.

I'm finding myself really getting anxious about Karsen not walking yet. I'm not quite sure why, but maybe because I feel like it's becoming more obvious he's behind. I know we have much longer before he will walk but he WILL walk. I'm not a patient person, but I'm learning to adapt. It makes it easy to step back and look at how far he has come. I'm so proud of him, my little stroke survivor. 

The little and I shopping for shoes.

 Look at him stand! Aren't those shoes too cute?! (For those of you that don't know me, I probably need to go to a therapist for how obsessed I am with shoes. But eeeek! Look at those!)

Unfortunately, the way Karsen's AFO was made I can't pull his pants down. When he bends his knee it's designed to let the brace move away from his calf as he bends. So, I can't really put his pants over it or else it will prevent him from being able to bend with it on. Summer time will be much easier.

AFO and SMO fitting

We got them yesterday! Finally! Mary Beth was worried with how long it was taking to get them he'd out grow them soon. They fit really well, with a little room to grow. You can't tell in the picture but they are blue camo print on the plastics. Hey, if you have to wear them, might as well make them cute. Today, we are going shoe shopping to find some that fit these bulky AFO and SMO's. They say DC shoes work.... sounds easy enough. 

Off we go!

 Look at my big eater!

Another trip to the ER

Friday evening I had plans to go out for drinks with my girlfriend Brittany. She is the one I Blogged about the other day, (a quick update: The neurologist is refering them to a pediatric neuro surgeon, and also told them it was not in fact a tumor, it's a cyst. Much better than a tumor.) I will keep you guys posted on Josh as I get the information. Of course like any plans you try to make as a mom something came up. I ended up needing to take Karsen to the ER. Ugh. It was really more of an annoyance. I wasn't stressed or panicked at all. This trip was cake walk compared to any other MRI, EEG, all that fun stuff. 

Earlier in the day, we had OT with our fav Mary Beth. We started working on standing more (Karsen's AFO and SMO STILL aren't here.) I was shocked at how well he can stand with the support of the wall behind him, completely unassisted from me or Mary Beth. Well, Karsen took one spill off to the side and did his 'I'm hurt' cry. As the day progressed, after nap and OT was finished, he was still crying and fussing. I tried to stand him a couple of times and he would freak out. When I changed his diaper I started grabing his foot and pushing it to see if it was hurting him, keep in mind this is his left foot, and he doesn't have much sensation on that side. He didn't like me touching his foot much. At this point it was 4:45PM (of course, couldn't be an easy appointment, lets make it a Friday evening when no one is open anymore) So, off to the ER we went. I dropped Karter of with my parents, which of course he LOVED, and Karsen and I headed to the hospital. One of the things I hate the most about going to new places is the grill of questions that come, all the questions about Karsen's cp, his seizures, his meds, what he's been on, what he's currently on... blah blah blah. And we they asked how long he's been walking I of course responded "he's not walking at all yet". "Oh! That's not right, he should be walking." I had to remind the nurse of his CP. Come on woman, read his chart for crying out loud. Even still, some kids with out CP still aren't walking at 15 months. Ugh. I should just start making a spread sheet so they could just read it. ha. Karsen ended up getting x-rays of his foot to make sure it wasn't broken. (That was my fear, that he broke his foot and since he can't feel that side as well he wouldn't be as affected by it, and I didn't want it to heal wrong). X-ray came back clear and after some assessment they figured Karsen had pulled a tendon. What to do? Take a break from standing for a while. Grrrr.... that puts a crimp in our OT and PT. Well, at least he doesn't need to be casted. 

We were in and out of there in two hours, TWO HOURS! That's the ER people! I was impressed. I was actually still able to meet up with my girl friend for drinks. 

Karsen is doing much better today. He has a little more range on his left foot and isn't complaining any more. The upside? Because it's his left foot he doesn't use it anyways, he wont be moving it which will help it to heal that much fast. Now it would have been convinient for Karsen to hurt his right arm so that way he's force to use his left, I know, I'm evil. 

Thankful my little man isn't casted and already getting better.

Here's one of his x-rays of his little foot (and my fingers). The doctor came over and said "Good news, his foot and your fingers are all clear" lol

So blessed

I posted a picture, the other day, on facebook of Karsen trying out a walker at his physical therapy appointment. We are just in the beginning of getting him use to it, so no steps have been taken yet. I didn't expect him to, he takes a while to warm up to anything new. Well, a friend of my sisters (really it's my brother in law's best man of his wedding, his wife, are you following? ha) One of her kids has diplegic cp, in his case I believe it affects his legs only. Ok, let me back up to the picture I posted. Karsen really should have his own walker but with all of the budget cuts he only gets to use one at his pt appointments (which is one hour a week) Really?! How the heck is he suppose to get use to that? Well, long story short, my fb friend commented on the photo saying she has a walker if we need it (ok, these things are quite expensive) FREE! How awesome is that?! She said she'll be sending it out soon. The catch? Just pay it forward when Karsen out grows it. I can't wait until I can do this for someone else. I feel so incredibly blessed to have so many amazing people in my life, small or big, they all have made a huge impact. 

In Karsenville, we have a few pretty life changing milestones. Karsen officially has the pincher grasp! He's starting to really feed himself now! This has made such a difference for me, I'm able to actually get dinner cooked with out burning it or serving it cold. Sippy cups are also in the mix. I think he's almost completely done with the bottle. I know it's weird but this makes me a little sad, it means he's not a baby anymore. When did that happen? He has now pulled himself up to his knees a hand full of times, although he does get pretty frustrated since he can't figure out how to use both hands to pull himself up and get to standing. He's so close. A huge one? Karsen was standing with me assisting him, he took four steps. That's right! Four steps, now granted they were very supported, but the fact that he initiated each step with BOTH feet is amazing! Seriously, this kid blows me away on a daily basis. I'm so proud of him. 

I'm looking into making Karsen a sling for his right arm (non-affected arm), to start doing constraint therapy. He really ignores his hand, if I put something in it he pulls it out with his other hand. I know it's going to take sometime to get him use to is (like the walker) So, once I get it made, I'll be putting it on him here and there when he is distracted and not wanting to play that way he doesn't totally get mad and resist it right off the bat. That is the plan, we shall see. 

To all of you out there, I want to say thank you. You may not know me, you may not be close to me, but maybe that one time you wrote a comment or said something to me in person or wrote something on facebook you may have helped me through that one single day. It may take a village to raise a child but it also takes a village to keep a mama sane. Love you all!

No choice but to adapt

I asked a fellow CP mommy to guest blog for me. I've been reading her blog since the start of our rocky start. She's one incredible strong mama, she blows me away and inspires me to be a stronger, better mom. Enjoy!

When I was pregnant I had the same dreams of any first time mom when I thought of my little one. A full term delivery, all the milestones, and a perfect baby. It never crossed my mind that all I had hoped for would be taken away and we would be thrown into a completely different path. I had Brayden at 28w1d and he weighed 2lbs 14oz. He was tiny but he was alive. The NICU quickly became our new life and went into survival mode. We gave up our dog so we could live by the hospital, Derek took a leave of absence from work, and I went on unemployment. Almost as soon as we started to get used to the NICU being our new normal, Brayden got really sick. We almost lost him. After he healed we started hearing things like brain bleeds, brain damage, and long term disabilities. It was devastating to think my perfect child would be special needs. The child I had wanted, the child I thought we had, had essentially died. I had to grieve the loss of that child in order to move on. Now grieving is a process and sometimes I still feel that loss two years later, it comes and goes.

After 5 months in the hospital (NICU and PICU), 3 rounds of meningitis, 5 brain surgeries, and a few nights we almost lost B, we finally got to bring him home for good. His body had been through a lot and his brain had taken a huge hit with all the infections. His MRI's were scary looking and the DR's weren't sure of his abilities. It was a miracle he was even alive. And frankly it was a miracle my husband and I survived all this as well. I think you just get into 'go' mode and you do whatever is necessary to be there for your child and keep them safe. You have no choice but to adapt.

Now Brayden is a happy 2 year old. He has been diagnosed with Epilepsy, Scoliosis, and Cerebral Palsy. He has severe delays and will be special needs his whole life. A lot of the worst case scenarios we were give have happened.

With that said, B is the happiest, smiley-est kiddo with the biggest personality. We have embraced his special needs, educated ourselves, advocated for him, and put him out there into the world instead of hiding him away. If you let him in your heart he will surely steal it and expand it. Being his mom has taught me so much about life and love. He's not the child I ever expected to have but he has ended up being more than I could have ever wanted. I wouldn't trade him for anything.

 Heather Helvey
Live.Love.Laugh.

You can read all about Heather and her super sweet B here. 

Light bulb on

Holy smokes! These last few weeks as seemed like a light bulb has just been turned on for Karsen. His eating has sky rocketed and his starting to become a full blown mover. 

Today was the first time Karsen got to eat like his brother, and when I mean eat like his brother he ate the same exact lunch. Chicken nuggets, raspberries and green beans (odd combination, but it works). Oh and let's not forget the sippy which he fully used on his own, full tilt and all. I couldn't believe how easy lunch was today. I think it's safe to say he might be off of baby food puree soon! FREEDOM! (*insert back handspring*)

As you all know, Karsen is in total butt scoot mode (that's his version of crawling). He's all over the place and fast! His newest attempt, pulling up to his knees. He just started pulling himself to his knees and is trying oh so hard to get up to standing. He's gotten up to his knees 5 times in the last 24 hours. We've been busting our butts the past few weeks, but boy is it paying off. He's still ignoring his left hand and doesn't use it at all, I mean at all! But I'm confident, when we do some constraint therapy (not until he's walking and a little older) we'll see some results. 

Karsen started waving bye and hi yesterday. It's still hit and miss when he actually does it, I honestly think he just chooses to not do it sometimes. He understands so much but just doesn't know how to communicate, it's frustrating for both of us. Karter and Karsen I are starting to play together more and more each day. It makes me so happy to see them actually play together and be real brothers, and yes that includes fighting. I have to admit I'm pretty excited when they fight, they are both being normal. I've realized I need to ease up on Karter  a little bit and not hound him with non stop Karsen orders. He's been so good through all of the hard stuff, the poor kid needs a break. 

Karsen got to try out a walker at physical therapy today. We didn't do any actual walking, we wanted him to not hate the walker so we just let him explore it and stand with it. He did pretty good. He was actually holding on with both hands.

We have two weeks left until Karsen is officially med free! Still not a single sign of a seizure. I'd have to say he's doing amazing! 

Shriner's

Today, Karsen had his first evaluation appointment with Shriner's children's hospital. I was shocked at how little we had to wait, in fact the doctor's (two of them) spent over an hour with us. I really thought the appointment was going to be a quick in-out. We ended up getting stuck there for two hours. I wasn't going to complain though, everyone was super nice and helpful. We sat around waiting for maybe 15 minutes total. After meeting with the physiatrist, he sent us to go get an x-ray of Karsen's hips to make sure his hip sockets were aligning properly. They were a little concerned when they did a physical exam of his hips which is why they wanted to do it in the first place. I should be getting a phone call with the results. Otherwise, if everything checks out, we would get routine x-rays as he grows (if his hips don't seem even, which they aren't now). 

We talked a little bit about serial casting, once Karsen starts walking. (All these medical professionals keep talking about Karsen walking like it would be any day.... I guess they don't see him that often). Serial casting is a method of casting the affected leg (in Karsen's case it would be his left) in the stretching position so he could get more range of motion out of it. It has really good results. I guess I haven't looked at much of this stuff because I feel like walking is SO far away. I mean, we've got a good 8 more months (medical professionals don't expect hemi cp kids to walk until age 2.). 

One of the people that met with us today seemed to have no clue what infantile spasms were. I was pretty shocked. In fact, I even asked her if she had ever heard of it before. Bold, I know.... I guess I don't tip toe around things anymore. Thanks to my hand phone with videos on it, I was able to show her exactly what they looked like. She then proceeded to ask me why the prednisone worked to stop them. uh...... I'm not doctor and I'm definitely no medicine research analyst. I think many neurologist don't know why one drug works for one kid but it wouldn't work for another. I was actually quite happy she was asking so many questions and seemed so interested. By the end of the appointment she told me she really wanted to do more research in IS since she felt like she didn't know anything about it. Honestly in a doctor? Since when? You mean you admit you didn't know what it was?! I was impressed. Impressed she had guts to admit she didn't know anything about it and even more impressed she was going to change that and educate herself.

All in all, our visit there went really well. Karsen even got a cute jelly fish suffy to take home. And it only took us 45 mins to get there! 45 mins!!!! Not 3 hours and 45mins. So, next appointment: in May. Successful day in Karsenville. 

Karsen with his new jelly fish, waiting for the x-ray tech.

Couldn't leave ya with out a pic of The Hulk from last night. 

Think before you judge

I got this in my email yesterday and had to share. Couldn't agree more.

Think before you judge. 

"Today, a lot of creatures will visit your door. Be open minded. The child who is grabbing more than one piece of candy might have poor fine motor skills. The child who takes forever to pick out one piece of candy might have motor planning issues. The child who does not say "trick or treat" or "thank you" might be painfully shy, non-verbal, or selectively mute. If you cannot understand their words, they may struggle with developmental apraxia of speech. They are thankful in their hearts and minds. The child who looks disappointed when he sees your bowl might have a life-threatening allergy. The child who isn't wearing a costume at all might have SPD or autism. Be kind, be patient, smile, pretend you understand. It's everyone's Halloween. Make it a special night for each child!"

-- Unknown