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.