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

Out of the loop

My life has been crazy, no other way to put it. With Karter's preschool, Karsen's therapy appointments and all of his other appointment, and training for a marathon, I have no life. No life, meaning I don't get time to catch up with my girl friends. I recently started feeling like I've been put on the back burning, not intentionally, but I feel like I'm there. I'm so blessed to have so  many supportive, loving friends in my life and couldn't be more grateful. I just feel as if I've lost that friend bond somewhere in the mix, with many friends. I don't get many random phone calls just to chat it up, or invites to get together for a laid back day. It's been a hard thing adjusting to our life now. I still have my days of missing my easy going life, but I also wouldn't change what I have now. People get busy, life changes, you just have to roll with the punches, which I feel I've done pretty well. Until recently. I miss my friends, I miss impromptu play dates, I miss going for walks, I miss normal conversations. Life has just gotten too busy. I was starting to feel as if I couldn't let Karsen even be just a normal baby. I decided something needed to change in our schedule, something so I could have a free day to either stay home ALL day or go over to a friends house or plan in impromptu play date. :-) So, here's what our schedule WAS:

Monday: PT at 11:00 (this is our easiest day, but it's smack dab in the middle of our day and naps)

Tuesday: Karter has preschool (8:30-12:30) OT for Karsen 8:00am, Play group therapy 11:00-12:15 Somewhere in this day I have to fit in a 5 mile run

Wednesday: PT at 11:30 (again smack dab middle of the day) fit in an 8 mile run somewhere

Thursday: Karter has preschool (8:30-12:30), this is also usually the day I have doctors appointments for Karsen

Friday: OT at 11:00 and home visitor also, and fit in a 5 mile run

Saturday: my hubby works every third Saturday (this is new and so nice that he's not there more than that) and the usual birthday parties

Sunday: My long runs (I'm up to 18 miles)

We've dropped PT on Wednesdays so we can have a fun day. Although, there are some weeks where Monday didn't work for our PT so that week we'll have Monday for a fun day. 

Looking at this and writing it out, I think "Ok It's really not that bad. Why do I feel like I have no life? Why do I miss my friends so bad?" I think I'm partly to blame for my lack of friendship (Ok, mostly to blame), I've been boarding myself up at home and almost avoiding catching up. I'm not quite sure why. It's been hard for me to admit my conversations will never be normal again, I will always be a stress case, and for the most part I think my friends get that. I miss the regular conversations about milestones and how toddlerville is, but we aren't there. We aren't in toddlerville, we just got out of newbornville. There are some days I would fear for just being a mess, crying my eyes out the whole visit (that's not fun at all). I also miss working, I know weird, right?! I miss the conversations, I miss the time out of the house, I miss feeling successful. The thing I miss the most? I miss being me. Have I completely lost site of how fun I can be? I think I've forgotten how to let loose, forget about all of the medical crap. So, I guess, yes, I've lost site and I think I'm the one putting myself on the back burner. So, to all of my friends, I'm sorry I've lost my sizzle, I'm sorry I've stopped chit chatting, I'm sorry I've been a crappy friend, I'm sorry I've lost site of myself. Time to bring myself back. Yes, my life is crazy busy but now I've got one free day! So, be prepared, I'm setting up my calendar to plug in some Jaimie fun. Why? Because I flat out miss you guys!!!! Love you all so much, and thanks for dealing with my crazy (or should I just say me being crazy).

How'd I get so lucky to have these silly boys in my life?!

Cuddle with me

"Mom, will you cuddle with me?" Those were the sweet words that came out of my three year old's, Karter, mouth this morning. Oh geez kid! Boy, do you know how to pull at my heartstrings. I was just about to hop on the computer and go about my usual morning routine of emails, bills, and reading my blogs I follow. Karter has never been a cuddler, but recently has decided he enjoys it (I soak it up!). Yesterday, I talked about living with no regrets, living in today. Well, today I will be taking my own advice. I plan on doing no work and all play. Today I plan on cuddling with my boys, enjoying every second of them being this small. Time goes by too fast, I know all too soon, Karter will no longer want to cuddle with me to be out playing with his friends. So, soak up today, put those chores off until nap time, or maybe even tomorrow. If you knew today was  your last, what would you be doing? 

Here's a few idea's I have floating around in my head for today:

Build a fort, turn off all the lights and bring flash lights in the fort

Play with play dough or even make it from scratch

Play dress up (in our case we'll be doing capes and super hero gear)

Play cars

throw a football around, or kick a soccer ball

Jump on the trampoline

Bake cookies

Read some books (maybe in your fort)

Color

Paint

Do a sciency project off of pinterest (you know you've pinned something)

Play with legos or blocks

Do alphabet flash cards or work on writing

Go on a nature walk and bring a nature scavenger hunt list

Roll a ball around between all kids (this maybe be challenging but very good for both boys)

Sensory bin fun (rice, beans, noddles in a Tupperware and throw some cups and spoons in there for them to explore with)

Cuddle while watching a movie

Have anything to add to the list? I'd love to have more on it. 

Happy Friday! Enjoy your day, ignore your chores, and live in the moment.

How could you not want to cuddle with that?!

My heart aches

We never know how we got to this spot, those hardships, those challenges. We never know the outcome, whether good or bad, but it is all a part of God's plan. No where in my life did I ever think "I think I'll have a child with cerebral palsy someday", never did that ever cross my mind. Even in the beginning of Karsen's life, it still didn't even jump on my radar. I still have days where I think "this can't be the plan God had in mind for me" but it is. This life, this journey, these challenges are what I was meant to live. Your life, your journey, your challenges are all apart of God's beautiful plan. Now trust me, I constantly struggle with trying to understand the purpose. The purpose my son has to struggle to learn to even crawl, the purpose my oldest son doesn't get to play with his younger brother like most siblings can, the purpose of the non stop appointments. The truth is we will never understand purpose, we aren't suppose to.

I write this today with a heavy heart. My best friend, who's 3 year old has development delays, was just told her son has a brain tumor (which is the cause of his delays). Josh is the sweetest, most loving, cuddly 3 year old I have ever met. Brittany, who is really more of  a sister, is a mother of three boys, 5 year old, 3 year old, and 6 weeks old. She is one amazingly strong person, in fact amazing just doesn't even describe the type of person she is. She's strong both inside and out, beautiful both inside and out, smart, loving, compassionate, humble, strengthening, oh I could do this all day. She has helped me through some very hard times. She was there when I found out about Karsen's cp, she was there when I had to quit work, she has seen the most ugly of times I've been through, we have an unspoken bond no one else could ever understand. God made no mistake putting her in my life. She is a friend to many, which is no surprise, she has a heart of gold, and is brutally honest (that's why I love her). Her husband, who is freakishly like mine, both personality and that darn fast metabolism, also has a heart of gold and is so sweet and loving to his boys, he is quite a father. They both love my kids as their own, and were never scared of Karsen's diangosis (sounds weird but people truly are). They are dear to my heart. I know God gave Brittany and Jimmy these three precious boys because He knew they were the perfect mom and dad for them. God makes no mistakes. I do not know what is to come next for this family, only God does. All I can do is be there for them like they were there for me and my family. 

These rough roads traveled may seem so hard and unmanageable, but when the fog lifts, boy what a beautiful life. What a honor and a privileged we have to live and breath each day. What a gift our beautiful children are. Embrace it, hug your kids, hug your husband, heck hug your dog or cat, be thankful you're alive. Today is one more perfectly crazy day you get to live(and yes, my life is perfectly crazy). Don't waste it, don't waste your time, don't live in regret, live in today. So, in these hard, challenging, heavy days I don't live in regret, I don't focus on the anger or sadness, I cling to hope, I cling to God, I pray. 

Please pray for our sweet little  friend, Josh. Pray for guidance and strengthen for both him and his family. Pray for the beauty to shine through and God's peace to lay upon them. 

 

Darn that hand

Today we had Karsen's OT appointment, bright and early. It had been a good month since we have seen this OT (if you can't remember, he's the one that has really bad BO from this post., and yes he still stinks) because of sick kids, 48 hour EEG, and a sick mom. This OT focuses a lot on Karsen's affected hand. Every person on Karsen's "team" seems to divide up Karsen's areas to focus on, quite perfectly. One person to take on speech and communication, one person for eating, one person for motor skills, and one person for his affect hand. To me, it seems well rounded, I'm pretty happy with it. We had to take a few steps back and go over everything Karsen is doing and not doing since it had been so long since he had seen him. One thing that we talked about was Karsen's hand/arm. It seems much tighter to him than the last time he saw him. Which I completely agree. Karsen's hand and arm has seemed tighter and tighter each week. Botox was brought up in our discussion. I was a little shocked, I knew it has been used plenty of times with great results and had done a ton of research on it. I guess I just didn't think we were there yet. Botox is widely known for taking away wrinkles, so to speak. Although we know they don't "take them away". they relax the muscles they are shot into. So, in Karsen's case, they would inject botox into the muscles that are constantly tight, constantly working. It would loosen those up, therefore giving Karsen the ability to strengthen the other muscles in his arm that are not being used because of his spasticity. Ok, have I lost you? Spasticity is unusual tightness, stiffness, or pull of muscles. This is the most common type of cerebral palsy. Karsen has spastic hemiplegic cerebral palsy. There are three other types of cerebral palsy; ataxic, dyskinetic, and thetoid. Ok, enough medical education for the day.... a lot of kids undergo botox to help with their cp. Sometimes, they'll do their arm/hand, sometimes their leg, or somethings both. They would have to put Karsen under to do it, which always makes me nervous. We'll see. When we meet with Karsen's physiatrist, we'll talk about it more and maybe get a date set, if that's the route we take.
We still have 4 more weeks left until Karsen is done tapering off his meds. He still isn't sleeping like his normal self, and naps are cut short, which makes for one tired mama. He's officially on the move, and I LOVE it. I think it's absolutely adorable. Every time I'm around someone, husband included, I'm constantly saying "LOOK! Isn't that so cute?!" ha. I'm sure I'm driving people nuts. He's still eating crackers like a chap (insert back flip), unfortunately still using his thumb to suck down his food, baby steps. After all, he is still a baby (sort of). We'll get there, in his own perfect time, in God's perfect time, we'll get there.
Karsen, hard at work at OT this morning.

Little mover

Every thing is really starting to pick up with Karsen. I can see the true baby come through the medication fog. It's so exciting. Karsen is officially a mover. That's right, he's butt scooting every where. He just started butt scooting the other day. Normally, he picks something up (like sitting up, turning around) and it takes him a while to really know how to do it. So, when I saw him scooting yesterday, slowly scooting might I add, I did not expect him to start moving for a couple of weeks. I guess I've been spoiled in a sense, put him down somewhere and expect him to not move from that spot (if he does it's just an inch or two). This morning, I went to the bathroom for maybe two minutes, Karsen was dead center of the room. I had to run out mid hand washing to the noise of Karsen crying. When I go out to living room, he isn't there, he's in the kitchen and has knocked over the dog water all over himself (hence the crying). I scooped him up, all soaked in dog water and began to laugh and feel nothing but joy. There was water everywhere, I mean everywhere. In the kitchen in the living room, on the wall but in that moment I felt so happy, so proud. I changed Karsen, cleaned up the mess and proceeded by enticing Karsen to chase a his sensory bin of noodles (not cooked) around the room. I have to say, it's pretty stinkin cute to see him scoot all around. So proud of my little man! This is a huge month in Karsenville. Self feeding, using a sippy cup, holding his own bottle, butt scooting, what's next? Can't wait to see!

Good and not so good

Tapering of the zonegran has been both good and not so good. Karsen has sky rocketed with his oral motor skills. I can't remember if I touched on this before, but a epileptic special had talked to me about Karsen's delays while we were in for the EEG. When I told her I believed his oral motor delays were a side effect of the zonegran she told me that was impossible, and that was a part of his cp. Ok, so let me back up to when Karsen first started having the seizures. We went through three different meds, at that time Karsen never used his thumb to suck down food and he also was able to feed him self crackers. Obviously, he took a huge step back, and it seemed to happen over night when he got put on the zonegran. The only other possibility that crossed my mind was the seizures causing the oral motor delay, but NOW. The minute we start tapering him off the zonegran he stops using his thumb to suck food down and also can feed himself crackers and is on his way to hold his own bottle.... coincidence? I think not! I remember being told, by our neurologist out of all people, "a mothers intuition will beat a doctors any day". I will never forget that, and don't you. Stay with your gut instinct. I don't know if you remember when Karsen was tapered of the prednisone. The experience  was much different then. Karsen turned into this alert baby that actually started to sleep through the night (before, he was waking up every two hours). One of the side effects from the prednisone was insomnia, that was rough, taking him off of it was so nice. Well now, the zonegran was making him drowsy, so now Karsen has been waking up earlier and earlier each morning deciding it's time to conquer the day. This morning? 4:30am. He also refused to nap yesterday after being up for over 7 hours I was relieved it was bed time and he was willing to go down. It's going to take us a while to taper off the zonegran all together, around 2 months. We have to take him off slowly so we don't risk him having a seizure. I'm so ready for this to be over. I'm not one of those people that function well off of little sleep, like my husband.  The excitement greatly out ways the frustration of lack of sleep. I'm beyond excited that Karsen has just taken huge leaps in the last week. 

Here's some butt scooting sweetness. :-)

My big boy enjoy his forth cracker in one sitting, I think he's got the hang of it.

 My silly butt scooter got over to shelf of toys and created a serious mess in record time, I couldn't be more proud. 

Happy Friday! Hope your Friday is as fabulous as mine. Yes, I'm running on little sleep, but there's coffee for that and really how could I be in a bad mood when both my boys are so awesome! 

Shut the front door

"Shut the front door!" Those are the exact words the came out of my mouth.

Let me back up a bit. Today, the boys and I went to the apple hill field trip put on by his group therapy center. Both the boys had so much fun. Karter got to run around with one of Karsen's favorite therapists, while Karsen and I got to chat it up with some friends while playing in the hay. After playing for a while, Karsen got hungry (as expected), one of the workers was walking around with some snap pea crisps, which Karter loves, but Karsen is still on a feeding strike and will still not feed himself let alone chew on any form of a cracker. Well, Since Karsen blew me away and fed himself with his spoon numerous times, I figured I'd give it a shot. One dip of it in his baby food (I'll explain more why I did this later), and handed put it in his mouth. I then handed it to him, and what do you know? Karsen popped that sucker right in his mouth and started chewing and eating it. I looked at one of his therapists that has been working on his eating with me and said those exact words "shut the front door!" I could not believe it! Not only did he do it that once, he ate another snap pea crisp right after, with no choking. That's right, I said it, NO choking! I'm still in a little bit of shock and still waiting for him to take a few steps back and stop doing it again, even though 99% sure that wont happen. I'm so proud of him and can see the light toward some freedom for me and fun eating for him. 

As if today weren't fabulous enough already, Karsen decided to blow me away once again. I put his sippy cup of water in front of him, just so he can get accustom to seeing it, therefore leading to using it. Well, He decided it was time to try himself. It's taking a lot of effort for him to get the bottle up to the right tilt point but he got water out of it once. Now, I don't expect him to start grabbing his sippy on his own by any means, but it's a start, a huge one. 

Just a few weeks ago, we had Karsen's 6 month evaluation. It was a rough day for me, you can read about that day if you haven't read it already. We set up Karsen's new goals for the next 6 months, two of them, which were big ones, were self feeding and also able to hold and use his own sippy. I think we're well on our way! Good job little man! You are constantly proving people wrong, and making me so proud!

*Feeding therapy tip: When you're trying to introduce something new, like a sippy or juice or a different spoon or food, make sure to keep one thing the same, something they are already use to. So, since Karsen wasn't use to the snap pea crisps, I dipped them in his baby food which he is very comfortable with. 

Pip squeakers

Some may say these are annoying but I just love them, pip squeakers. They are toddler shoes that squeak when they step. Karter had a pair which he quickly out grew, so maybe that's why I didn't get annoyed by them. Well, I was digging out Karter's old shoes to see if Karsen could fit in to any of them yet, Karter had big feet so the one pair of pip squeakers didn't fit but I put them on just for fun. Oh my goodness! Karsen LOVED tapping his feet on the ground. Needless to say, I hoped on the internet earlier today to order him a pair that will actually fit. The best part? They are designed extra wide and have room from top to bottom as well for those little ones with chubby feet. We'll be needing the room once Karsen's AFO and SMO arrive. I can't wait for them to get here, all of them, that AFO, SMO, and the shoes. It will be interesting to see if it makes him want to try to walk more. Can't hurt huh? Any of you cp mommies trying to get your little ones to walk, I high recommend trying these out. You can also take out the squeaker later if you like. I got them at pip squeakers. 

On other news, Karsen has started to tapper off his last medication. He has now decided he doesn't need a morning nap anymore but I'm pretty sure it's because the meds were making him sleepy before. I'm actually quite ok with just one nap a day, two naps in one day makes me feel stuck at home or gives me a very small window to get out and do my run arounds, plus I kinda like spending him with the little stinker. ;-) Karsen's doing great! The eye patching is moving right along, and I can't seem to keep him on his stomach or back anymore. Since he's strong enough to get up from laying down that's all he does now, sit up, all the time. He also is officially full time butt scooting. He no longer just goes in circles, he can now move forward. Today was the first time I saw him really make some movement forward and on purpose. He's been trying really hard to hold his bottle himself. He has to be laying down but he's pulled the bottle away from his mouth and back to it all on his own. He actually will use his left hand to help assist, which he never does. Today at group therapy, Karsen made a huge leap that made me want to jump up and down. He willingly took the spoon full of food and put it to his mouth. For those of you that have kiddos that don't have feeding issues I know it may seem small, but this is HUGE! Karter is such an amazing big brother. Most mornings, while Karsen is in bed with me nursing, Karter will go grab himself a toy car and Karsen one. He come running back to our room and hands the toy to Karsen saying "Here ya go Karsen, let's race." Yesterday, Karter was popping a lolly pop out of his mouth over and over again because Karsen thought it was hilarious. He belly laughed while Karter did it over and over and over again. I'm so blessed to be their mommy. 

Check out this two handed action! So proud of him!

Time for yourself

I wanted to take a break and talk about something that is incredibly important and I can tell you right now, us moms, special needs or not, don't do it enough. Time to yourself. That's right, I said it. We can all sit here and come up with a million excuses why we don't, how hard it is to do it, how hard it is on your husband, blah blah blah, but that doesn't change the fact that you still need it. I am one of the worst people that pulls every excuse out of the book when it comes to making time for myself. For those of you that don't know, I am currently in the thick of training for a marathon. If you've ever trained for a marathon or even a half then you can understand what a huge commitment this is. I still am in the current battle with myself, of loving and hating that I signed up for this. I really truly believe it has kept me sane through the past 6 months. It has given me a mental break and time to disconnect myself from everything, when I say everything I mean EVERYTHING. I still have a hard time thinking that this "time for myself" is spent in misery, running for almost 3 hour straight, and not at a spa, or having lunch with a friend. ha. Like I said, love hate, love hate. For my birthday, I got a bunch of new, schnazzy running gear. I was like a kid on Christmas when I got it all. I wanted to go for a run right then and there. But the present that tops it all? Dinner with my sissy and a massage. What?! Shut the front door. Three hours of enjoyment and not punishment? Yes please. As I sit here typing this, my calves are cramping, my back is wrenched and my glutes and thighs are fatigued to say the least, I couldn't be more ready for this massage. I can tell you right now, I'm a better mom when I spend time away from my boys. I hope you get what I'm saying.... ha If I constantly guilt myself into staying with them 24/7, I get grumpy and in a funk. I love my kids, don't get me wrong. But before being a stay at home mom, I was a full time hair stylist, working 6 days a week, one of the most social lines of work you could be in, and now I have taken on the role of OT to one, and preschool teacher to another. Not quite the social life I use to have. When I make the time to just step away for an hour or so every now and then, boy oh boy can I handle temper tantrums and attitudes much calmer, which in return makes a happier child. So, my point.... make time for yourself. Stop saying "yeah, I need to do that" and just do it. Reach out to a friend and see if they can take your kids for an hour while you just go for a walk by yourself, ask your hubby to put the kids to bed while you soak in the bath. You need to take care of yourself to take care of your kids. On that note, I'm going to go toss on my sweatshirt, throw my hair up in a pony tail, slip on  my toms. Massage time here I come! Hope my massage therapist is ready for this mess.... ;-) 

Now, do it! Plan a day where you get even just an hour or two. 

No excuses!

I decided to give Karsen a bath in the sink the other day and of course Karter wanted to take his bath there too. I was surprised he still fit. lol Silly boys.

Giggles never get old

To those of you that have the pleasure of meeting my little man, I think you would all say the same thing, he's always happy and smiling. For those of you that haven't had the pleasure of meeting him.... well, here's a clip, enjoy! I could watch this over and over again. He melts my heart. I could never get sick of hearing my kids laugh. It's probably my number one on best noises. What's your number one?

48 hour EEG result

The past two days have been an absolute blur. I'm overwhelmed with the amount of support, love and prayers from all everyone, from my family to friends, and friends to friends of friends or just plain followers, Thanks you. 

Karsen and I left bright and early at 6AM to head for our rush hour traffic drive to the hospital for his 48 hour EEG. We hit a fair amount of traffic but still arrived 30 mins ahead of schedule. The nurses got us set up in our room right away. I wish I would have taken a little more time outside before rushing into what felt like quarantine. Our two nurses we first had were really sweet and helpful. Our first epileptic specialist we met was not so nice. Well, maybe I just have a sour taste in my mouth about her, I guess she could have been nice, but I made up my mind 5 minutes after meeting here... I don't like her. We went over Karsen's history and one question that always comes up and I hate answering "is he up to date on all his vaccines?" Ok, before I get going on a tangent on my beliefs, doctors, research.....blah blah blah, let me keep this part short as I can. To each their own. You are your child's parent, you make the decision whatever you see fits best, and have the best outcome for your little one. With that said, Karsen hasn't had any. I can make a whole long blog post on vaccines but quite frankly, I don't want to. It's just like politics, you're not going to make me vote for a different president just because you put up a few pictures on facebook and I'm not going to change your mind about vaccines after I would tell you how I feel. again... not getting into. Ok, back to the woman I don't like.... When I told her Karsen didn't have any she looked at me like I had a third eye, asked why and then proceeded to tell me about a case in their hospital where a baby died from meningitis even though they had the vaccine.... her point she was trying to make I don't think came out right... Oh well. Moving on. We talked about Karsen's constipation, (sorry little man) and his drooling, and eating delay. When I told her he wasn't having issues until the seizures (with the feeding) she told me "that has nothing to do with the seizures, that's the massive amount of brain damage he has dear"..... eh hm! What?! Try that again my DEAR?! Have a little tact for crying out loud. Of course I started crying, I hate that saying "brain damage" and then she had to go and add on "massive amount". So, can you see why I don't like her? After we were done with her we met with our tech who was going to put on all the leads on Karsen and a secondary person to distract him with a fancy schmancy ipad ap. ha! Good luck lady. He doesn't even like me putting his eye patch on, you think an ipad ap is going to help? I felt awful for the two women and of course for Karsen. He screamed the whole time. I think the second girl figured out fairly fast, the ipad wasn't working. Thankfully he stayed up the whole drive there and was super tired from screaming and crying he fell right asleep. This 48 hour EEG was a video EEG. So, anytime I moved Karsen out of the crib I had to readjust the video camera so it had him in sight 24/7. That was fun! *sigh* Looking back now, I'm so glad it's over. Karsen did really well, slept well, ate well, and was pretty much happy the whole time. We brought some of his current therapy toys/tools and worked on a lot of bench sitting while we were there, play/therapy was hard considering we were in a hospital room so he couldn't just play on the ground, we ended up playing on my pull out bed most of the time (which was quite slopped and not very even since it was all pushed together cushions, but it worked). Every nurse in our department kept coming over to see the "cute baby" and he lived it up each time a new person would come in. Huge grin, every now and then squeal. Some of them came back to check on him even though he wasn't on their patient list. I don't know where he gets his social side from ;-). On the plus side, I don't think Karsen has EVER gotten that much undivided attention from me. No laundry, no dishes, no meals to make, no bills to pay, no big brother, just me and my little man. The next morning we met with the secondary epileptic specialist. He went over the results with us from the last 24 hours, and told us that he got enough information from 24 hours, there's no need to stay an extra day. WOO HOO! (Keep in mind neither of us left the room, not once) The specialist told us Karsen's EEG came back abnormal (no surprise there, his will most likely always be abnormal), this doesn't mean he's having seizures it just puts him at a much higher risk of having them than "normal" people. The EEG came back clean of no seizures, that's right NO SEIZURES! The dazing, and weird behavior (easiest way to put it) is all most likely a symptom of his medication he's on. He also told us he was shocked Karsen's brain waves weren't as spiked as expected. With the amount of damage from his stroke, and his infantile spasms he expected to have to sift through a mess on the EEG. That was also good to hear. This in now way means he'll never have another seizure. He could have one tomorrow, he could have one 10 years from now, or he could never have one. You just never know. Our plan of action? Tomorrow morning, I'm going to talk with Karsen's neuro to go over everything one last time and then, hopefully, start tapering him off his last and final medication. Dare I say he maybe medication free?! Really, our appointment couldn't have gone any better. We got to leave right after, didn't hit any traffic, picked up my big little, and had dinner with my hubby. *sigh* It feels so good to be home, good to have closure, to know that he isn't have any seizures at night, or nap time when I can't watch him, I feel like I can put this chapter to rest. 

So, there it is. Our 48 hour EEG turned into a 24 hour EEG with really good results. So thank you again for all of the support and prayers. Oh and the many texts from my close friends and hemi mommy friends. You guys all kept me sane. 

Wiped out and ready to fall asleep and yes I brought all of his bedding so he would feel like he was at home. It seemed to work for the most part. He slept 7-5am (but I think he would have slept longer had it not been for me being up already from sleeping on that hard as a rock pull out.

That blue bag and cord had to go everywhere with us, and Karsen wasn't aloud to play with it, which of course he therefore wanted to play with it all the time.

It was really hard for me to not watch the monitor all day. Pretty neat to see how the brain reacts and how I could tell if he was a sleep just by looking at it.

 Excited to get all the leads taken off.

 What a sticky mess! (after one shower it's still in there :-/) Might have to rub his head in some baby oil tomorrow. 

Oh, and I did not bother eye patching him while we were there, he had enough going on and I didn't have enough stuff to distract him from crying about it.

Down to up, down to up, down to up

Karsen sat up from laying down on his own today and has not stopped all day long. I think he's done it over 10 times now. This is huge for him. It usually takes him over a week to start doing something over and over again. It makes for diapers changes to be a little challenging, but such an excitement at the same time. (So for those of you out there that we like me with my first child, that get so frustrated when your child wont lay still while you change their diaper, instead of frustration find the joy that your child can do that.) You may not get excited about this video like I do but I'm sure you can tell at the end how excited I am. 

Happy Friday!

Preparing

Fridays are almost always my lay low days. We have our OT or home visitor come out on Fridays at 11:00. So, it's the perfect excuse for me to stay home and get stuff done. My fall decorations are out, the laundry is going, the dishes are clean, the windows are open and my fall scented candles are lit. This is a perfect day at home. But what makes it even more perfect? Karsen got from laying down to sitting up, 100% on his own! On our typical lazy Friday, I put on a movie for Karter, Elf. He loves that movie. Well, Karsen was rolling around and noticed a movie was on, and started to watch it on his stomach and twisted up. He did not look very comfortable. I was trying to coax him to at least scoot so he could see better but instead he just decided to sit up! Woo hoo! This is huge for him. This means he can actually get from laying down to sitting up on his own rather than crying at me. Well, looks like I FINALLY have to put his crib down to the lower notch. That's right, I still have his crib at the highest notch. lol So, today I'm finishing cleaning up the house, and then making a list of what to pack for Karsen and my trip to Stanford. Lots of books will be packed. I think it's going to be quite hard for me to not be busy with a million things. I'm going to enjoy every second of spending so much my undivided attention with Karsen. Any ideas as to what to pack for a 48 hour in hosptial EEG besides books?

Me and my sweet boys.

AFO and SMO

Yesterdays appointment for Karsen's casting went ridiculously well. He didn't make a peep and didn't move, just watched. I was shocked. They ended up casting both feet. Ok, when I say casting they take a cast of his foot so they can make the AFO to his exact form of his foot. So, it gets cut off right after it dries. They are ordering an AFO (ankle foot orthosis) for Karsen's left foot, that will go almost all the way to his knee bend. The SMO (supra malleolar othosis) helps maintain a vertical, or neutral heel while also supporting the three arches of the foot, it helps improve standing balance and walking. The SMO is still considered an AFO it's just the smallest of them all.  Karsen's right foot over compensates for the lack of coordination on his left side. So his right food doesn't stand flat. The SMO should help with that. The AFO for his left side is designed like an SMO but comes up much higher and helps support ankle rotation and prevents toe walking or standing, which is very typical in cp kids. Their main concern for Karsen's left foot is his toe curling. Here's some pics of examples below. I'm actually pretty excited to get these, it means Karsen's that much closer to walking (it's pretty far out of site right now, but we're working on it).

 above is a picture of an AFO

 This is what a SMO look like

 A pretty good shot of the difference of feet. Some obvious toe curling on his left foot.

 Getting his right casted

 Holding it still so it can form correctly.

Getting the left casted.

Karsen was  champ!

Eye appointment update

Yesterday was Karsen's appointment with Ophthalmology, the trip down there was probably the most successful and least stressful. We got down there, avoiding a good amount of traffic, while Karsen and I were in with the Doc, Karter and Kuper were outside playing. The doctor was very thorough and took a good amount of time with Karsen, I was very grateful. Karsen got his eyes dilated, which was fine, I was surprised he did so well when they administered the eye drops. Now checking his eyes after the fact, that's another story. Whew! He did not like that at all! He screamed for a good solid 5 minutes. The doctor had to bring in her assistant to hold open his eyes while she looked and I held Karsen against me. It was heart breaking but I also didn't want to have to do this again, so one shot was the goal. It worked. The doctor was able to get all the information needed and at the end of the visit Karsen got yet another diagnosis to tack on to his chart, strabismus. Really, I was relieved. The actual definition of strabismus is; a visual defect in which the eyes are misaligned and point in different directions. One eye may look straight ahead, while the other eye turns inward, outward, upward, or downward.  In Karsen's case, his right eye is turned inward. Because it isn't happening all day long the doctor is confident Karsen will not need surgery and all we need to fix it is eye patch him for an hour and a half on his good eye to strengthen the muscles in his right eye. Strabismus is common amount children with disorders that affect the brain. Number one on the paper we got? What do you think? Cerebral palsy. No surprise there. I'm very happy Karsen wont need surgery but sad we have to eye patch him every day for x amount of time. I know he's not going to like it. I definitely want to avoid doing this in public.... could you imagine the questions I will get for that one? A hand brace is one thing, an eye patch?! Poor little man. Well, that's it for the update. Karsen's scheduled on Monday for his 48 hour (they decided to do 48 hour to make sure they catch anything, rather than having to do it again) EEG. The best part about it? We get the results before we leave at the end of the 48 hours. Woo hoo! Immediate results don't happen very often in the medical world. I'm ready for it! Ready to get answers. Our hope? That Karsen's staring is a symptom of his seizure med and not an actual seizure, if that's the case than no more meds. If he is in fact having seizures, Kuper and I both want to switch him to a different med since this one he currently is on (zonegran) has so many nasty side effects. One of which, oral motor function. Since Karsen is having such eating problems you can understand why I want to get him off that med. Tomorrow Karsen gets fitted for his AFO (ankle foot orthopedic) I'm going to try to take my camera and get some pictures or maybe even film so I can put it up for people that will be soon going through this too. I have no clue what to expect. We'll see.... Until tomorrow. :-)