Small victories

One subject I want to touch on today is milestones. Before Karsen was born, I had just Karter. Boy were things easy then! I can't help but laugh at people that make it seem like the have the hardest job in the world with just one child that doesn't have any medical problems. I had SO much time for myself when I just had one kid. But I also believe every child should have a sibling. Karter and Karsen are the best things to ever happen to me. They both have taught me so much.... especially Karter being at the true for terrible two's which I believe to be more into the three's....he's taught me a lot about patience. Ok, back on track to milestones. Today, at Karsen's therapy session we were talking about what he can do and how much he's been able to do in just the last week. Weight shifting, balance reaction, Proper sitting, stronger core. These are all things, when I just had Karter, I never saw. I never saw them because I simply wasn't looking for them. I think so many people, myself included before, don't realize how much work it really is for a baby to learn to crawl. Heck, to even sit up. It's taken Karsen a while to master the sitting but he's there, I just still have to leave a pillow behind him just in case he decides he's tired of sitting. We are working on him getting in and out of sitting safely, which knowing what I know now is really hard. But today, after our session, I couldn't help but think "Geez! I took so much for granted with Karter!" I never took the time to notice how Karter would weight shift, I'm sure he picked these things up so easily which is why I never notice, but I couldn't help but feel like an awful mother. I took so much of what Karter was able to do and on track, sometimes even ahead,  for granted. I'm a part of a few support groups, online, which has been a huge help, and one of the things that are continuously posted always sticks with me. *We celebrate the small victories*, because they are so big. So celebrate all the small victories, special needs or not. Take the time to soak in every ounce of your child.

Small victory, Karsen sitting on his shins and not falling over. :-)

Out with the old, in with the new

Karsen's new thumb/wrist splint came in the mail today. It has a thermoplastic stay in his thumb to keep him from curling his thumb back into his palm so he wont need surgery on his hand later on down the road. For those of you that don't know, kids with cerebral palsy have the tendency to keep their affected hand in a fist. This can cause a lot of tendon tightness, which could call for surgery later on down the road if not watched carefully. I thought I would show you all the few braces Karsen has got. He's grown out of all of them except for one, and then of course his new one that came in today. When his OT comes tomorrow, we'll set his new brace to his thumb exactly. 

Here's his old thumb splint, that he quickly out grew and figured out his way around it... that little stinker. This is a McKies pediatric thumb splint. He wore this mostly at night but sometimes during the day when his hand was a little more tight than normal. Look at that tiny little thing.

 This is the supinator strap, also by McKies, he would wear with the thumb splint occasionally to help him turn his wrist toward the ceiling. So if you look at your hand, palm facing toward the ground and turn your hand so your palm is facing the ceiling. That's  your supinator muscle. Those also have the tendency to tighten up as well, Karsen's was particularly tight but has improved greatly. 

 This is his bamboo brace, that's the brand if you are curious. There is changeable plastic pieces that vary from really flexible to firm. This brace helps support his arm to bare weight. It wraps around his elbow preventing him to bend his arm. 

 This is his new supinator strap, also by McKies. The older one was getting too short, we weren't able to wrap it around enough.

 This is his new thumb/wrist splint. It's a Benik splint. We'll be trying this puppy out tomorrow. We are suppose to heat it up a little so we can mold the plastic thumb piece to his thumb. I'm waiting for Mary Beth to do that for sure. ;-) I'm not quite confident enough to do that on my own.

Choosing a color for this thumb/wrist splint was actually pretty hard for me. I didn't want it to be obvious, I wanted to avoid all the questions from strangers and little kids (lets me honest, they never have a filter) but I also wanted him to have a color that would draw his attention to that side. So, with that said, I decided out with the nude color in with the blue color. Catchy... lol 

Hope you feel a little more educated on splints today. ;-) I am so thankful for the many people that created these so kids wont need to endure painful surgery. 

Waiting room

We were squeezed into an appointment today with Karsen's regular doctor, since his neuro is such a drive, to check out what's going on with him. From one appointment straight over to the lab to get blood work done. My day of zero appointments quickly got busy with many. But this little man doesn't let anything get him down. While waiting in the waiting room for someone to call us back for the blood draw, Karsen decided to chat me up for a little. 

Enjoy!

*Proud mommy alert*

Not quite himself

Ever since Karsen started the new drugs, he's just not seems like himself. It's becoming more obvious to me. I was hoping it was temporary but it hasn't gone away. He's been on the meds for three weeks now. He doesn't have much drive to play, doesn't seem interested in any of his toys, and doesn't smile or babble nearly as much. So, he's been seizure free but is this the price we pay? It breaks my heart to see him this way. No child should have to live their live in a haze of drugs. We have an appointment on the 3rd. I'm so impatient I am going to send our neuro an email right after I post this. I just have that gut feeling something is not right. On top of this, Karsen has had a few random days of scream crying, where he just seems miserable. I'm wondering if it is a migraine or if it's something with the seizures. I hate having all these unanswered questions. Lets hope we get some answers soon. Please pray for my little man. Off I go to email the neuro.

Where to begin?

As I sit here thinking about yesterday, I can't help but cry (the good cry) because of how much people have done for us. From family, to new friends, old friends, to people we don't even know! It was such a beautiful, perfect day. I was overwhelmed with the amount of support we received from so many people. We had a huge turn out! I think it was more than any of us expected. The food was AMAZING!!!! In fact, it was so good, some people paid twice to get a second round! Huge thanks to Jake, my awesome brother in law. We served over 250 people! The silent auction was a hit, and a huge success! The bands were just perfect for the gorgeous view. I couldn't have asked for anything better. I'm not quite sure what I am going to do to thank my parents for putting this one (especially my dad) but I need to think of something good. I can't wait until we are in a situation to be able to pay it forward to someone else in need some day. Here's some pictures, Enjoy.

 One of the two amazing bands

 Shake your groove thing

All snuggled up with nana after a long day. He did SO good!

There are so many amazing people to thank for so many different things. Thank you everyone for the support and prayers. We are so blessed to have you all in our lives. 

He's pretty much amazing

Our usual Friday OT session was AMAZING! Karsen has been blowing me away this month. It really just shows me how much his seizures we were stopping him from what he could accomplish. He's been seizure free for 10 days, unfortunately he had one day in the middle of those 10 days where had one baby seizure but hasn't had one since. He's some photos of the hard work my little man has been doing.

Look at him on all fours!!!!

Working on some side sitting

I'm so proud of him, he's been working so hard. 

We also are trying to get him to stop sucking his thumb while he eats. He's cheating and not learning how to use his tongue to get the food back... that smart little stinker. He's been a hard one to even take pureed foods, even bottles. He's not a huge fan of it but we are making small baby steps.

potatoes, potatoes, and more potatoes

Prep work has began. Huge thanks to my amazing brother in law, and my awesome sis who has taken on the food. We have started the cleaning, cutting, spicing, tossing, cooking, more cutting, more cleaning.... well you get the idea. Getting ready for the big today tomorrow for Karsen's Concert and Benefit lunch. Kuper and I have been left out of most of the planning for the benefit for good reason, stress. I think we both have enough on our plate. Since so many people are going above and beyond for us, we thought we needed to get our hands a littl dirty as well. So, started my morning with some insanity, and then after Karsen's first nap, we headed over to the lovely Birch home, and began the prep for all of the food. I hope you are all hungry for tomorrow! There is no shortage of food that's for sure.

I'm so looking forward to seeing so many people tomorrow. I know the food will be fabulous as well as the music. I'm ready for some wine, are you?



the awkward grab

It's been a weird thing to start blogging, and because of the wonderful world of Facebook, it has given me the ability with keeping everyone update with out repeating myself over and over again. When I first started blogging, I had so many people tell me "I had no idea! I'm so sorry!" I wouldn't have expected everyone to know since this blog was the first time I was putting it out there for everyone to know. It's not really something you bring up when you run into someone randomly "How are the boys? How's Karsen?" "Oh, he has hemiplegic cerebral palsy, and suffers from a form of epilepsy. We're doing great. You?" I don't think this approach would have gone over very well. That amount of support and prayers we have gotten from people from this has been amazing!

 But I have to let a little steam out, I'm sure you will all understand. Seeing people in town, in the grocery store, pretty much anywhere since we live in such a small town is a common daily occurrence. I have received, many times, the awkward shoulder hold and the "How are you doing?" with the sad concerned look on their face. First off, the shoulder hold is just a sign that we aren't that close for you to give me a hug. Second, you clearly have been reading my blog so therefore you know how I am doing. I can't help but laugh every time I head back out to my car. It's so awkward for me and I'm sure the other person as well. Don't get me wrong, having so many care about my family blows me away, I think more than anything it's the personal boundaries. We all have them, some are less than others, the older I get the more space I need, not really sure why. I constantly get the pity looks from people, or Karsen does, which is equally as painful. I am absolutely in no way saying I don't want to talk about Karsen, I love talking about the progress he makes, I just hate putting myself back in the beginning stages of being sad and over come with emotions. So please, no shoulder hugs, awkward stares, or hand grabbing. (When ever I think of that I think of the movie 50/50, where the therapist grabs his leg in an attempt to be supportive but it just comes of semi creepy. So funny!) Rather, ask me how his therapy is going, how his eating is doing, how his meds are working, how he's sleeping. We don't focus on the sad side of things, it doesn't accomplish anything. I still have my days of "losing it" and breaking down. In fact, I had one not too long ago where I "lost it" because I couldn't find my keys. One of my friends simply put it "I think we all knew it wasn't about the keys" Yes, I do still have my days but the good ones greatly out weight the bad. 

We are so very lucky and blessed Karsen is still alive, a stroke survivor and a fighter. So, if you know someone with a child with special needs, help them focus on the good. Don't be sad for them, be happy for them that their child is alive and that God has chosen each one of us for each of our children. God knows I am strong enough to handle this situation and able to give enough love to these two amazing boys. He will never give us what we can't handle. I thank God every day for giving us both Karter and Karsen. My life would be very dull and boring with out these two. 

One week

We have hit one week, today, of zero seizures! We have a few more weeks of being on this drug and then we have to tapper him off. The real questions is will they stay away when we tapper him off? We hope and pray that is what will happen. Karsen is moving forward and blowing us away. He's so strong. He's baring weight for longer periods of time each day. We just need to work on getting out of sitting the safe way and then I wont feel like I need to set up a pillow fort behind him. We got bumped up on his physical therapy. He has a physical therapists, an occupational therapist, and an early childhood education specialist. Maria, his physical therapists, bumped him up to weekly. We are in the process of getting his OT to come weekly as well, and his early childhood education specialist will stay every other (hoping we can bump that up soon too). I'm so grateful they come to our house. That would be a lot of driving.

Karsen's benefit is this Sunday. I can't believe it's almost here. My parents, and so many others have been working their butts off putting this together. We are so blessed to have so many selfless people in our lives. 

Three days and counting

That's right, three consecutive days of no seizures and counting! Karsen is doing so good too. We had our usual therapy session today with a whopping three people this time. He did awesome. Mary Beth was blown away from what she saw last week. He's sitting up so strong, reacting to weight shift and strengthening his legs and arms. I'm so proud. We have, however, noticed he's really curling in his thumb into his hand more than we would like. So, we ordered a wrist/thumb splint to give him more support and prevent needing surgery later on in life. The only thing I dread about this is the questions that will come out in public. When I asked Kuper what we should say in response, he simply said "just tell them he has cerebral palsy". Well, you make it seem so easy! ha! 

We took both boys to the fair yesterday, it was pretty hot but didn't stop either one from having too much fun. Karter was in heaven, wanting to go on every roller coaster possible. It was so need hearing him crack up on one of them. It brought tears to my eye to see the joy in his face. Karsen was completely content just hanging out in the stroller taking in all of the bright lights and crazy sounds. It was so fun. Kind of a bummer they only stay in town for four days. I can't wait until the boys can go on the rides together.

A couple of weeks ago, Mary Beth left us an amazing therapy swing for Karsen (and Karter too of course) to play in. It's huge! It can fit me and both boys in it. Both Karter and Karsen love it! 

Here's a few pics of getting some swing time in.

Moving forward

It's been over a week since Karsen started his new medication. As from my previous post, they really affected him the first four or so days. Now, he seems to be more like himself and tolerating them more. As warned by the doctor about the side effects of one medication being appetite increase, HOLY COW! That has hit big time. I've had to start giving him formula because my little body just can't keep up with him (especially with training for a marathon), he's taking 1.5 extra bottles a day a long with one extra serving of baby food. That may not seem much to you but I've gotten his eat routine down, so this is very much out of the norm for Karsen. So far, Karsen has had 4 out of 5 seizure free days. (not consecutively). He hasn't been seizure free for over three months straight. We aren't totally getting our hopes up, but it's an improvement non the less. Because Karsen isn't having the down time of the seizures he's been able to more forward on his motor skills. He's completely transformed from how he was a week ago. This morning he was rolling all over the place, and staying on his tummy for much longer periods of time, along with looking way far up. The biggest thing I notice this morning, as doing our morning workouts (I call them our work outs because I'm usually pretty uncomfortable and Karsen really is working out/building muscle) I sat him side sitting, one foot pointed back and the other toward that knee. He always fights me when I do this, it forces him to try to weight bare, he's only done this twice, both during OT. Well, this morning both hands came down and held himself up fully extended for about 10 minutes. I was shocked and so proud. I'm so glad the seizures have stopped (at least for now) so he can learn and explore. Such a little thing has brought me out of my funk of feeling at a stand still. It's the little things that make a huge difference. I continue to pray that the seizures stay gone. Thank you for all your kind words and prayers for our family, keep them coming ;-). Lets keep moving forward, little man. One day at a time. 

Here's a picture of my little man hard at work.

They've taken over

Today was Karsen's occupational therapy, the time it is every week. It's always hard on him, it's hard work, but today was particularly more hard than usual. Since starting Karsen on the new medicine, he's been completely taken over. It breaks my heart, I hate to see what the side affects of the medicine are doing. He's been completely cranky, and has no drive to do anything. Therapy was pretty hard. Imagine a full hour trying to get a baby to want to do something he doesn't want to do and in the process dealing with the screaming, and fighting. It's 100% apparent the drugs have completely taken him over. I would like my happy baby, that smiles at everything, back please. I can't wait to get him off of these drugs. We still haven't seen a change in his seizures yet, but there is still time for the meds to work.

In the mean time, I've been submerged in surgery research, trying to find other cases like ours. The type of seizures he has in correlation to the EEG are rare, it's even more rare to find a baby that has hemiplegia on top of it, and then adding the surgery on top of that. I've found two people who's stories were somewhat  similar, but it's still like comparing apples to oranges, both a fruit but so very different. I feel at a stand still. Like any situation, waiting is the hardest part. I want answers, I want no seizures, I want my happy baby back, I want a break, I want to know the worst is over. I'm ready to move forward, and on with our lives. I fear this is only the beginning.

Karsen's favorite place to be

some went good... others, not so much

I'm so glad yesterday is over. Cramming three appointments in one day is exhausting and we only had one child that day! I'm so thankful Karter didn't have to go, he would have been miserable. The first appointment went better than we expected. The urologist said only one testicle hasn't dropped (much better than both) and there's still a chance it can happen on its own. He wants to wait out another month and take it from there. Kuper and I were shocked, for once we got fairly good news! Next stop; neurologist. I was in such a good mood from the first appointment I wasn't prepared for the neuro at all. When we got there we talked about our plan of action with Karsen's medications. She stepped out for a little bit to talk to an epilepsy specialist. During that time Karsen had the longest seizures he's ever had, and of course the whole time she was gone. It went on for almost 20 minutes. Kuper and my feelings of good were quickly washed away. His neuro then told us our options, we have decided to are start him on prednisone, with his current seizure drug (and zantac for his tummy). If this doesn't work, then we'll try one more drug. She didn't feel very confident the prednisone would work. If those two both fail, then we will need to seriously discuss surgery. What?! On my babies brain?! I was completely caught off guard. I didn't think we would ever need to come to this. My stomach dropped and I instantly felt like I was going to throw up. I'm so very happy with Karsen's neuro, she's very informative, takes her time with us, and always shoots us straight. I just didn't prepare myself this time. A month from now we have another appointment with the urologist and the neurologist to follow up on both. We'll move forward from there. Third stop; lab work. Feeling absolutely sick to my stomach from the neuro appointment, I started getting more nervous for just a simple blood draw. Blood draw is nothing compared to the MRI but still someone was going to be hurting my baby. Hadn't he been put through enough today? Heck, hadn't Kuper and I been through enough today? After all the appointments were done, we headed out to the car and began our drive back home. We decided to stop and get dinner before we got back home and that's when I lost it. Started crying in the middle of the restaurant. With a shoulder to cry on a a happy, chatty baby, I quickly pulled myself together. This is just another bump in the road, we will pull through this. Things will get better.

Thought'd I'd wrap this up with a video of our little man at dinner yesterday, cheering me up. Enjoy! (notice who's sitting in a high chair finally!)

Long day ahead of us

Tomorrow morning, Kuper and I head out bright and early for our long day of appointments for Karsen. I'm so thankful my hubby is so willing to take the time off work to go to all of our specialist appointments since they are such a far drive. Thanks to my sister and my mom figuring out the day of swapping, between the two of them, they will be watching Karter so we wont have to drag him to a bunch of appointments that he'll just hate. Even though the road to get here was quite a fight and really ugly, I am so happy with the many gifted doctors  working with us. I've been emailing Karsen's neurologist back and forth about his seizure medicine and what to do next since it isn't working. After many emails, she told me since we were coming down for Karsen's appointment with the urologist she was going to squeeze us in for the same day, just a few hours after. For those of you out there who have a pediatric neurologist for your child, you know how difficult it is to get into them. For those of you that don't know, the average pediatric neurologist had a 7-9 month wait when we were first trying to get in, and that was even when Karsen's case was marked urgent. Our neurologist is amazing!!! I'm so happy we ended up at Stanford. The drive is very worth it. 

First thing tomorrow, we drop Karter off at my sisters. Karter is so excited he gets to spend the day with Auntie and best of all make cupcakes... those so better not enter my house... lol ;-) Then off we go for our three hour plus drive down to Stanford Children's hospital. First stop: the see the pediatric urologist. We've been told to expect an hour and a half for the appointment. I feel so lucky we've found doctors that don't rush us out the door. Next stop; pediatric neurologist, in hopes to figure out a plan of action to stop Karsen's seizures. We are now at our max dosage and they are still around 6-8 times a day. And then the final stop; down to the lab to get blood work done. When Karsen suffered the stroke, it was either caused by a blood clot from the placenta or from his own body. So, the blood work show us if we need to put him on blood thinners or not, to prevent any more strokes. Then head home! Is it the weekend yet?..... 

Please continue to keep Karsen in your prayers. He's been so strong and continues to surprise us all by still pushing forward in his development even though he's still having seizures (his type of seizures have been known to regress development) He's my little fighter! 

So, say a little prayer for safe travels tomorrow and no traffic (ha that'll be the day)