CP- what I want you to know

An amazing video done by a fellow CP mommy. Had to share it, it's so beautifully written.

Yes, I WIN!!!!

Since Karter and Karsen were both born, Kuper was constantly trying to get the boys to say Dada first and I well... you know what I was doing. Saying "mama" every chance I could get. Karsen, in the last month, has just exploded verbally and been making all sorts of different sounds. I love hearing him babble to himself after a good nap. After a long exhausting session of PT, Karsen was telling me all about his day..... all sorts of sounds. Then, that cute little sound that brought an instant smile to my face "ma ma ma ma" YES!!! Now, I of course, had to tell Kuper first thing because he said a word (riiight! Not to rub it in at all, No! Never! ;-) Karsen wasn't saying  Mama on purpose obviously, but just like any other kid out there this is how it all starts! So excited to hear that little sound come out of his mouth! That's right my little man, ma ma. You say it all you want! I win babe! ;-) Two for two.

So proud!!!

Today Karsen had his usual Friday physical therapy. We've been working on him weight baring on both arms. This quite hard on his left side and some what hard on his right. Today, the first thing Mary Beth did was put him on his shin, legs tucked under so he can try to weight bare just a little. What does he do?! BAM! Fully extended, both arms weight baring!!!! We were both so blown away. I almost started crying, not hard to do these days, who am I kidding... not hard to do in general. For those of you out there with a baby that is (I hate to say this word because no kid is really truly) normal; treasure every moment, every milestone, even the little ones I, myself, took for granted with Karter. I know weight baring for a normal baby is still exciting but I find a serious amount of exhilaration from my little mans accomplishments. I'm so proud of my little man! Karsen, I know you are going to take on every obstetrical head on and overcome every hardship! I love you more than words can express!

I'm one beaming proud mama!

As you can tell, physical therapy is hard work... no smiling picture here but such a huge accomplishment!

Spread Awareness

Got our Hemiplegia Awareness bracelets today! Woo hoo!!! $2 per bracelet if you would like to purchase one. Just comment below and let me know. Thanks for all of your support and prayers!

In perfect timing

As a mother of a child with special needs, I probably over analyze everything. The past week, I've been reading too much on what other kids with hemi cp are doing at the 10 month range. I think as mothers we do this anyways, even when are kids don't have a form of special needs. Having my first son, who is ahead of the game on everything, threw off my radar anyways. So, I've been feeling like I'm not doing enough for Karsen. I'm not working on his physical therapy enough when his therapist isn't here. At the same time, I feel like I'm not doing enough with Karter, to make sure he's getting enough attention. Two kids can really make you feel stretched thin.  Well, once again, Mary Beth the amazing to the rescue! First words that came out of her mouth at our session today "He's doing so good! He's so strong!" Ok, so I am doing enough. He is still moving forward! His core is getting stronger. He's doing all the right things to get him toward sitting up and crawling. It's always nice to have a professional reassure you.  This morning I woke up discouraged, especially since his seizures started to increase again, yesterday 5, today already 6. 1 hour and 40 minutes later (Mary Beth is only suppose to be there for an hour, I LOVE her! ) She left me feeling so much better and so proud of the strides my son has made. For those of you that read my post "Welcome to Holland" I should be reading it more frequent. In fact, I think I might put it in a frame and hang it in my living room. This journey is different. It's special. It's hard, but rewarding. It's not a 100 yard dash, it's a marathon. It's challenging. It's strengthening. It's meant for me.  

It's.... Perfect!

Getting the ball rolling

Thanks to so many great people, Karsen's benefit is starting to come together beautifully. Here's the info if you haven't seen it yet.

Finally some good news

Today Karsen had an appointment with the eye doctor. I had no clue what a eye doctor was even going to do or be able to see with a little man as young as Karsen, but he was able to tell enough. I left the appointment wanting to jump up and down, screaming "WOO HOO!!!" For those of you wondering "what do they do for a baby at the eye doctor?" Well, they look at tracking, and light reflection. They make sure the eyes work together and not separate. He passed with FLYING COLORS!!!! He told me that most kids with hemi cp would have a loss of peripheral vision on the affected side. Karsen showed no signs at all of any vision loss. Finally, my little man gets good news!!!! We have to go back in for one more test, since one piece of his equipment was out for repairs, but he said its just to be on the safe side. Here is to a wonderful day (I hope all you readers out there had a wonderful day as well. If not, try to find the good in it... it's in there, just not always obvious)

Somethings got to give

My poor baby just can't catch a break

I took Karsen to his 9 month check up today. Going to these appointments are a piece of cake compared to his neuro appointments. I went in thinking "This will be a breeze", an hour later I left feeling broken, once again. Called my husband first thing, told him what happened. Going through the regular questions of what your baby is doing clearly doesn't apply with Karsen. His doctor asked what medication he was on, his update on everything and began to check him over. He was in the 80th percentile for height (my tall boys) and 42nd for weight. His head was starting to shift to a normal head shape and not so misshapen. When he took off his diaper and started to examine everything, he took a serious amount of time and wasn't saying anything at first. He then asked me if Karsen's testicles are always up. I told him I didn't pay much attention to it, right then I felt like an awful mother. How could I miss something like this?! But now, looking back, I realize they always have been that way. I just assumed he was always cold, but today he was definitely not cold considering how hot it is outside. Thank God for doctors knowing to look at the small stuff that we skip over thinking nothing of. I have no clue what those things are suppose to do. Apparently Karsen has undescended testicles. (sorry Karsen if you're reading this at 16 years old saying "Moooom!") He told us considering everything going on he wanted to send us to a pediatric urologist right away. Ugh! I couldn't help but remember the ugly process it was to get Karsen in with the neurologist. All the non stop phone calls, dealing with insurance, calling the referral specialist, basically being a true form squeaky wheel. Well, I guess here we go again! Now, here I am, googling once again on what this all means. In about an hour I will be hitting the phones and hounding the insurance. Us moms will move mountains for our kids, right? Wish me luck and say a pray for my little fighter please. 

Go Karsen, Go!

Yesterday, Karsen took a huge leap in his devolopment and rolled over on his own! He did it three times! For those of you out there with a child with cp, you can understand how excited I was. For those of you with a child that is "normal", remember how you felt when you first saw your child roll over? Multiply that by 10. ha ha No, really. I'm so proud of him, he's getting so strong. His physical therapist always tells me he's so smart. I LOVE her! (not because she tells me he's so smart. ha) I can see what a true passion she has for her career. She also has a long back round of working with kids with cp. Every time she leaves I always feel so driven to help Karsen. Thank you thank you Mary. Your hard work, and dedication to your job has clearly shown itself.

Another good thing about yesterday, Karsen was seizure free all day! I'm hoping we have found the right medication and amount. I would like to avoid the steroid shots. I know if it came down to it I could do it, but I really don't want to give my child a shot every day. So, lets pray for another seizure free day.

Pediatric Stroke Awareness Month

May is Pediatric Stroke Awareness Month

Before Karsen, I had no clue an infant, let alone unborn baby, could have a stroke. Here are some of the causes of a stroke in a child: birth defects, meningitis, encephalitis, trauma, or a blood disorder. In Karsen's case, he had a blood clot that traveled to his brain. We are so lucky he is alive. Childhood stroke survivors can suffer from cerebral palsy, mental retardation, and/or epilepsy. Babies who have strokes in-utero or within the first month of life, are at a higher risk for cerebral palsy. A baby in-utero needs oxygen rich blood so that its brain can develop and grow. When a stroke occurs, the blood and oxygen stop flowing to all parts of the brain. This causes the brain damage, which can cause cerebral palsy. Even though a stroke to a child is devastating, they have a better ability to heal because of their better plasticity or flexibility of their nervous system and brain. 

If you would like to add any information please feel free to post a comment. 

Our little Karsen

"Welcome to Holland"

"Welcome to Holland"

I the other day and thought I would share it. Its so perfect for so many different situations. I hope it touched you as much as it touched me.

"Welcome to Holland"

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.

It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says,

"Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.

It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say 

"Yes, that's where I was supposed to go.

That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Karsen's EEG

About a month ago, Karsen started having these spasms where his body would flinch and his arms and legs would lunge forward. We watch Karsen like a hawk, so I didn't think they were just nothing. One day we were able to catch them on video. We found out, after emailing the video to our neurologist (my how technology has changed our lives) that his spasms he was having were in fact seizures. We had an appointment the next day so they squeezed us into the schedule to get him in for an EEG. They told me it would be good if we could get him to sleep during the EEG, yeah right! This kid loves to sleep in his own bed and rarely sleeps anywhere else. Plus we had a three hour drive down there. To my surprise Karsen stayed awake for most of the drive. When we got there the tech asked us how Karsen was with people touching his head. This is one thing I thought "ok this isn't going to bug him too bad, just reading his brain waves" ha! right! Apparently Karsen hates having people touch his head. He was screaming, working himself up, and trying to rip the wires off his head. Poor guy looked like he had brain surgery once they were done putting everything on. The plus side? Well, he was so worked up he fell asleep during. I got a huge relief when that happened, but then I found out they had to wake him up after 15 minutes. What?! Ok fine, I'll roll with it. Karsen was so tired when I sat him up he was falling back asleep sitting up right. The tech started making a ton of noise to get him to wake up... he DID NOT like that. They then proceeded to use the strobe light on him, and then at the very end had to hold his eye lids closed for 20 seconds three times. Pure torture for a 9 month old. Huge sigh of relief when that was over. Results were fast! We got them 20 minutes later. The doctor told us they wanted to nip the seizures in the bud asap. They can be very dangerous for Karsen, and his development. So we started a drug that is fairly mellow in hopes we won't have to do steroid shots. I pray that this works for my poor baby. To all those moms out there that have gone through numerous tests and seizure medication, my heart goes out to you. You are strong women!

MRI Results

Our doctor called us the very next day to go over the MRI results. It was no shock, for once, when she told me it was confirmed Karsen had left hemiplegic cerebral palsy. He had suffered a stroke in-utero. I had no clue infants, let alone an unborn baby, could have a stroke. My poor baby. The cause of his stroke was a blood clot. The next step is to do blood work to find out if he had the blood clot or if it was the placenta. I hate that they have to draw blood. I'm dreading that appointment. I pray that Karsen doesn't need to be put on blood thinners. The good to come out of this? Now I can get him into more physical therapy since he has an official diagnosis. So, time to be  a squeaky wheel and get things done for my little man.

Karsen's MRI

The day of Karsen's MRI went how everything else in this process has gone, rough! Three days before his appointment I get a phone call confirming and also telling me the guidelines to follow for the procedure. Since Karsen had to be put under for the MRI he couldn't have any solid foods after he goes to bed the night before (ok no big deal), and no breast milk 3 hours before the appointment (What?!). Keep in mind the appointment time that we were suppose to be there wasn't the time of his MRI, it was the time to get the ball rolling. Thankfully this time, Kuper was able to go with me. My sister watched Karter since he wasn't allowed to be present, so my mind was at ease knowing he was in good hands. One less thing to worry about. So, off we went again on our three hour drive. Karsen slept most of the way, and was doing ok until we were waiting to be taken back into our room. He was melting down! He was so hungry! Kuper had to hold him because he was getting more and more mad that I was holding him (when he knew I had what he needed) and I wouldn't feed him. It was rough not being able to comfort my baby. Finally, they took us back and got Karsen his little hospital gown to wear. The poor guy had to wear pink... although, I'm not going to lie, he would make a cute baby girl too. I even told Kuper "so this is what our baby would look like if we were to ever have a girl" They let Kuper and I both be in the room when they put him under. They warned us that his body would jerk once he was under but nothing prepared me for the way I felt in those minutes. I held his hand and patted him tummy as he fought falling asleep. I completely broke down once they said he was good. Seeing your baby so lifeless and hooked up to everything is just scary. I cried in Kuper's arms and I told him I should be the one this is happening to not him. He then reminded me if this had happened to me I wouldn't be able to take care of our boys. So true. My husband, my rock, my best friend, always knows what to say to me and when to say it. I don't know what I would do with out him.
As we waited outside in the beautiful outdoor seating the hospital had, I attempted to distract myself by reading the hunger games. It didn't work. I cried some more. Time passed and we started to worry even more. He should have been out in an hour, it had been over two. A million things were running through my mind; did they find something bad, did Karsen have to be intubated, what happened? We talked to a nurse that went to check and see where he was at. She came back with in minutes saying he would be out soon, and warned us that babies at his age can get really disoriented and may not seem themselves for a while. I was so glad she gave us that warning, but it still didn't prepare me enough. When we were finally able to go see Karsen in recovery, I wanted to sprint in. Of course I didn't. When I got there I saw my little man bundled up with cords coming out everywhere. He was cranky and very out of it. When I tried to feed him he was so disoriented he didn't even know how to latch on. I, once again, started crying..... surprise surprise... I was a mess. The staff at the hospital was great. We had two nurses by his side pretty much the whole time. He was the youngest child in the recovery room. Finally, after a few hours and some tylenol (they had to suction his throat when he was under) he was able to eat and get a little bit back to normal. We were free to go home! So thankful that day is over and we wont have to do that again. Got home at midnight, tucked my two little men into bed and crawled into bed myself and was able to actually sleep. Thanked God for keeping my baby safe and thank God for my boys.

One of the worst days

It was valentines day, and for those of you that know me, I hate that holiday and this day didn't make it any better. Karsen had his first appointment with a pediatric neurologist and it was a 3 hour drive. I could barely sleep the night before and to make matters worse Kuper was up all night with the flu. There was no way he was going to be able to make the drive down with us. So, I called my mom and she was able to get off work early to head down with me. Before I left I drove to the little market just a few miles from our house to get Kuper some ginger ale. Since it was a short drive, I took our old, hunk of junk, blazer. Manual locks, windows, 5 speed, old turd. I pulled into the parking lot, set the E brake, locked the door and started to walk to the store when the car started rolling into the street! The E brake had failed and now it was slowly rolling back. I frantically tried to get the door open but it was locked, right then the car rolled over my foot. That's right, rolled solidly over my foot. Who manages to get their foot run over by their own car with no one driving it? This girl right here. The store worker came running out to help me stop the car, thank God! we were able to stop the car. I went in the store bought some ginger ale and and drove home crying the whole way. A million things were running through my head; I didn't have insurance, I didn't have time to deal with the ER today (we had been waiting for this appointment what seemed like forever), and I was suppose to run a half marathon in 6 weeks. I just cried and prayed the whole way home. 

I rushed into our bedroom, told Kuper what happened while hysterically crying. Realizing I was able to walk back to our room and roll my foot around, it was safe to say my foot wasn't broken. in fact it wasn't even bruised! So, I pulled myself together, packed the boys up, and left to pick up my mom.

Thank God (literally) for my mom! a 6 hour drive with a toddler and a 6 month old by myself would have been a little stressful. We got to the appointment just in time. My mom stayed out with Karter while I braved the appointment alone, but with Karsen of course. The doctor asked me what seemed like a million questions, most asking about Karsen's birth and if there was any complications.  She spent over an hour with me. I was really grateful, I had a lot of questions. It seemed as if she was dancing around what I already knew, so I asked her flat out "is this hemiplegic cerebral palsy?" The period of time from googling to this appointment I thought I had prepared myself mentally and emotionally. But when I heard her say yes, I still felt like I was going to loose it. She ordered an MRI to confirm, and talked to me about what to watch out for seizures and a few other things. I walked out to my car with Karsen in my arms and my mom and Karter trailing behind me. My mom knew to not ask anything. Instead, she did what all great mothers know to do, she held me while I cried. I guess I was holding on to the hope that the doctor would tell me I was just being a nervous mom and he was fine. I think every mom, who finds out something is wrong with their baby, clings onto the hope that they are overreacting. It was hard to hear that my baby had cerebral palsy. 

Off we drove home, dealing with rush hour traffic, took us longer to get home then expected. I was able to try to rest a little bit and try to shut off my mind. I got home, tucked the boys into bed, went to lay down and then it hit me... my sweet sweet husband shared his germs. I was up all night throwing up. As if the stress weren't enough. Through all of this, this whole day, I found so many things to be grateful for. My foot wasn't broken, I have an amazing mother, Karsen was alive and happy, and I didn't get sick until all of the day was over. I mean how bad would it have been if I got sick on the way there, or at the appointment, or on the way home! There is always good in every bad day, it's just hard to look at it sometimes. That day it was especially hard to look at the good but it was there.

                            My amazing mom and my oldest Karter