Surviving

We have survived 2+ weeks of NO SCREEN TIME! 2 weeks people! It's actually been pretty easy now, both our kids seem to realize that it's not going on as part of our daily routine, at some point it will come back in as a once a week treat, family movie night or something, and I'm quite happy with that. They even made the trip to Stanford without any screen time at all! 8 hours in the car and not once did they really complain. We packed lots of color books, reading books and toys. Karter seemed to be the only one, besides me, that kept asking "How many more minutes until we are there?" We've entered the "Are we there yet?" phase. Neuro appointment went well, besides the drowsiness, Karsen is handling the seizure meds quite well, no need to increase or change it up. Our neuro is also referring us to a neuro muscular specialist. We are going to explore possible botox for Karsen's left hand. I'm excited to see what they have to say. It will take a few months for insurance to approve and then a few months to get in, but there is really no rush. Karsen's eye appointment also went really well, we are meeting back in 6 months to see if Karsen's right eye is the same as it is now, if so, then we will discuss surgery which might make it so Karsen will never have to wear glasses again! I was really excited to hear that but also a little sad. He just looks so handsome in his cute little miraflex glasses. ;-)

I've been feeling a bit heart broken lately. Karsen has been known as the hitter by his classmates. I've had it mentioned to me a handful of times by other parents. Now let me be clear, not a single one of them were trying to be mean or protective of their child, it more so came out of playful conversation, small talk. So I was never offended or hurt by the comments of other parents. What hurt was having a little boy in Karsen's class ask me "Is he in a good mood today?" When I responded with "I think so." he then replied "So he wont hit me today then?" Ouch.... that stung. My heart broke for Karsen. He of course, has no clue that these kids know him for hitting, and his teachers do an amazing job of explaining to each kid that Karsen doesn't have words to tell them no, but I just don't want this for him. He doesn't always understand body language by other kids, he seems to think everyone is out to get him, everyone wants the toy that he's playing with. He also has personal boundary issues. I feel lost, I no longer know how to help him. I've tried every behavior technique known to get Karsen to stop hitting, it doesn't matter. Poor Karter gets hit about 10-20 times a day on a good day, I'm so thankful Karter doesn't hit him back. I've had many talks with Karter to make sure he understands that Karsen doesn't know how to act appropriately yet. Yet?! Will there ever be a yet? I'm exhausted. I had visions of my boys growing up close, especially since they are 22 months apart, becoming the best of friends. It's just not there. I spend the majority of my day breaking up fights, explaining to Karsen why we don't hit and especially not with a toy golf club. It doesn't matter how nice or mean I talk to him, it doesn't seem to soak in. I pray this is just a phase, in time it will go away all together. I'm just not sure if I can see that happening with in the next few years. When I think about dealing with his behavior issues for the next couple of years it makes me want to curl up and hide. God is the single one person pulling me through  this, helping me trudge through these waters, guiding me while I slip and fall unsure of what way to go. I will never know where my life will lead, what's next in my life, what challenge I will have to face, we will never know that. But I find comfort in knowing He is there, every step and will never leave my side. His plan is always better than mine, and even though right now I'd like to say "It'd be a lot easier if you could just tell me why, where, when" His plan has purpose, while mine? I think mine would just be to survive. His is to thrive.

 

Lots of changes

Karsen has been doing great! With the med now at it's max full dosage (that we are testing out) as of today, he's handled the med really well. We decided to put him on triepital (not keppra since his aggression is already bad) and really we can't complain. He seems more alert at school and at home, the only side affect we've seen so far is drowsiness, he takes crazy long naps (3-3.5 hours). But it seems temporary until he gets adjusted to the med increase. So far I am still seeing his staring spells but like I said he's still just now at the last increase. We have two appointments tomorrow at Stanford. We'll be spending all day there again, not for an EEG thankfully but just because our appointments are a bit spaced out. We have his eye check up to see how his glasses are doing and see if we need to change his prescription and neuro to follow up on everything that has gone on in the last year. The drive is not fun, but I really can't complain since we have such an amazing neuro. 

We've decided to cut out ALL screen time for Karsen for a while. Crazy right?! I mean it's not that crazy, but for those of you that know Karsen, he is a technology junky. We met with his pediatrician last week and went over all that has happened lately and talked a little about his aggression and what to do, as well as his drooling..... ugh..... yes drooling that's a whole different story,  and went over his blood work on food allergies. It was a pretty long appointment as usual and I left crying in my car..... fun! Just simply because Karsen was DONE, done being in that tiny little room. After talking to his pediatrician about aggression she had mentioned a study being done on kids (any kid) where screen time has been linked to aggression..... She told me this as Karsen and Karter were planted in front of the ipad. Maybe that's why I cried in the car, well, ok, not maybe... yes, that is why I cried in the car. I had failed, I totally used screen time as a crutch to get through the day of making dinner, sending emails, getting a break and I felt like I had completely failed my kids. I'm no where perfect and that's ok, but I knew each time I'd put on the TV, deep down that it wasn't the best thing for them. So, I pulled myself together, talked to Kuper and cut screen time all together for at least two weeks maybe a month. It's been going so well (8 days in) that I totally think we could do more than a month of zero screen time. Later on we'll have movie nights still and do small amounts but we will NOT be doing any screen time during the week permanently. It takes me a bit longer to do certain things, like dinner and shower, I've now learned how to shower by strobe lighting (thank you Karsen) but Karsen's freak outs have gotten much less so I have no issue sticking with it as long as I see positive results. 

We had a great Thanksgiving. Went to my parents with my sister's fam. Karsen LOVED the mashed potatoes and devoured a slice of pumpkin pie (that's my kid). We have so much to be thankful for this year. We are so blessed to have our house, our boys, our health. This year has been an amazing year. I'm looking forward to lots of memories in the coming weeks. 

Couldn't leave you with out a sweet pic of my handsome little man. (sending a package to his runner buddy, April) 

We LOVE our neuro, hate epilepsy

The next day after Karsen's EEG was a busy Friday, like any other Friday. I was told that it could take a week to have the results from his EEG. It has to be read by two people then gets sent off to the neuro who also reads it her self along with the reports. So I really wasn't expecting to hear back anytime soon. I had a  brief 15 minute break in my day at work. My phone rang, I looked down a saw the caller ID read off our neurologist. My stomach dropped. I knew getting a phone call that soon wasn't a good sign. It had been less than 24 hours since we were there. Don't get me wrong, I am SO grateful they are prompt and on it, but in the back of my mind I was hoping.... well ok maybe it was not the back it was probably more like all over.... that I was over reacting, Karsen wasn't having seizures, he was just tired, we was just stuck in a stare like I do. Well, deep down I knew. I knew it was something, just like I knew when he was 7 months old and would have these weird spasm jerk things. I'm so glad I listen to my mommy gut, I'm so glad I ignored our epileptic specialist and went to our neuro. If I wouldn't have been so proactive Karsen's seizures could be getting worse. Our neurologist told me immediately that his EEG showed spiking that was accurate to the type of seizure I was describing. He also is having these spikes for 2-3 seconds, just short enough for us to not even think it was a seizure. The risk of not doing anything is having the seizures take over his whole brain, have them last longer, turn more severe. So, again, I'm grateful for speedy results. We are starting Karsen on Keppra which has been known to cause extreme agitation (perfect, right?! Let's add that on top of his frustration to not be able to communicate.) but our other drug choice option was not one I would choose for him (known to cause speech delay, and cognitive impairment). We'll also be giving him B6 with the meds, since it's been known to help with aggression. Praying this works. Praying for no more seizures. Praying for strength. Praising God for answers.

Couldn't leave you with out a cute pic of my handsome little man. His first school picture. 

Diet change

Karsen has handled the diet change remarkably well. We had our first big melt down when his brother and friends were eating mac n cheese and he was stuck with gluten free raisin bread with peanut butter. I don't blame him, I would want to stuff my face, burry it in cheese. Ha. If it were me required to change my diet, it wouldn't be pretty, not gunna lie. 

We've seen some amazing results. Karsen now sleeps until 5:30-6:30, sometimes even as late as 7:15. He even started pooping daily, TMI I know, something he's never done. We are STILL waiting on his blood work to come back and the additional tests we had done. Karter also had blood work done to see if he is having any food allergies as well, his tonsils need to come out, the kid snores like no other. If it's food related we may be able to avoid surgery for Karter. Not the kid I would think would need surgery but it's such a minor surgery, if needed I really wouldn't be concerned. 

Karsen's mood seems better, he seems to have less tantrums, although they do still happen, I'm not sure if that's a diet change or just growing in maturity. He's starting to try to talk a lot more now as well. Again, don't know if that's diet change or just him growing. Either way, we are thrilled. 

Karsen's 8 hour EEG is Thursday. We aren't 100% sure if he's having seizures or not! since they look so different than the ones he had before it's hard to tell. Praying we get some answers, and they get enough info in the 8 hours we will be there. 

How did we get here

That's a good question, how on earth did we get here? How did we get through those first three years of Karsen's life? How did we not break? How did we come out of it even stronger than before? One word, God. 

I would love to sit here and take credit for all the strides Karsen has made, all the wonderful things our family has done, how together we all are, the reality is, I can't. God has done some amazing things in my life, two of them being my amazing kids. I also would like to say our family is perfectly imperfect. That's right, we are all beautifully flawed. I am no where near the perfect mom. I could have more patience with my kids, keep up on the laundry more, keep dishes out of the sink more, play with my kids more, read to my kids more, we all have lots of room for improvement. I know one thing is certain, God picked ME to be Karter and Karsen's mom. He chose me to raise them, love them and care for them. What a privilege. And wow is it exhausting. It's had some serious downs and some amazing highs, just like any of your life struggles, life stories. We are still in the thick of it, being tested daily, some times hourly. I still struggle with the constant desire of wanting what I don't have, wanting my boy to start talking, wanting him to be "normal". In the midst of these struggles I'm reminded and what beauty Karsen has brought into my life. There was no mistake when God created Karsen. Karsen shows me the light without even knowing it. I love more than I've ever loved before. My heart is wide open with no fear. 

How'd we get here? How'd we survive? How do we continue when it's rough? How do we love with out fear? How. Do. We. Live? 

One day at a time. One hour at a time. One minute at a time. One breath at a time. One prayer at a time.

Enjoy the beauty. Enjoy the ride. Live in that one exact moment. 

Live now.

More food issues

I took Karsen to his pediatrician yesterday to figure out why he's getting sick all the time and taking forever to recover. After an hour and a half appointment and almost two hours at the lab, we've figured some of it out. Karsen's body is working on overdrive to fight off the food in his intestines that he's allergic to, so his immune system is suppressed right now. This is why he's getting sick on stop, his immune system is so weak from fighting non stop it can't even fight off a common cold. Obviously this is a big problem, with all those nasty viruses going around, it could land him in the hospital. We did more blood work to find out what food is causing the issues. We already know he can't have corn or oat, well now we've discovered he no longer can have dairy or gluten. This is not a temporary change until he can handle this food, this is a permanent life change for him. We will ever be able to have corn, oat, gluten, or dairy. Poor guy, right?! We've had to make some major changes in our house. We can't keep any of that stuff around, Karsen will throw a giant fit for cereal, crackers, cheese if he sees it but can't have it. So it's got to go. It will be good for our whole family but it's definetly going to take some getting use to for Kuper and Karter. we went over Karsen's sleep issues, we are going to try to add in a few extra vitamins that he's most likely lacking since his body is having a hard time absorbing the nutrients from most food. Our hope is its a vitamin deficiency and not seizures that's causing the bad sleep. Two day was the first day of making the food switch. Breakfast was easy, eggs and sausage with our green smoothie, lunch was a little interesting but not too far off of what he gets. Dinner is going to be more challenging. Pleasing everyone is going to be a hard task. Pray for me....lol

He's a 3 year old

Karsen has now been in school for two months and LOVES it. I can actually leave after saying good bye to him, something I didn't think he'd ever be able to do. It helps having his nanny work there and the other teachers loving him just as much. They are all amazing. I get pictures weekly from one of his teachers on all the amazing things he is doing. Two handed things, fine motor, gross motor, he's doing amazing. I was telling Kuper the other day, minus the speech delay I feel like he is just like any other three year old out there, tantrums and all. ha.
It makes my heart so happy when I pick him up from school and he's so happy to see me but clearly has had a good time. He's even made a few friends, which let me tell ya, has been a worry of mine. He can't talk, how can he communicate with other kids? How can he ask a friend to play in the sand with him? Well, apparently speech is not needed. When I walk in to drop him off, I hear other kids say "Hi Karsen!", "Look Karsen, look what I'm playing with." These kids just tug at my heart strings. I don't think they realize the impact they are making on our lives. 
Karsen does seem to be having seizures again. They aren't the infantile spasms like before, thank God, and they aren't as frequent as before either. He's only had three of them in the past few months. I believe he's been having absent seizures, we can't be sure until his EEG. They aren't affecting him a ton, he does seem to sleep much longer during his naps when these happen but other wise he's not doing bad. Hopefully after his 8 hour EEG we'll get more answers. I ended up talking to our Neuro about the spells after his Epileptic specialist told me "Well, if he's having seizures and they aren't affecting his daily life there's no need to do anything" (WHAT?!) This was after I told her that he took a four hour nap and his sleep is all over the place. I'm glad I went with my gut and listened to Kuper when he said to just contact his neruo instead. We love her. She's amazing and has always listened to me, in fact even said "you know your kid better than I do, what do you think  is going on?" Isn't that how all doctors should be? 
We've been seeing Karsen's new speech therapist now for over a month. Karsen's finally warming up to him. He's really working on saying the B, M, and P sounds. He's almost got all down. He's talking people! I mean, really talking! He says ya, more, ma, da, bye bye (it actually sounds like bye bye too!!!!!!) and ipad.... not joking. lol He's really starting to come along. I told my friend, his old speech therapist, I feel like I'm finally seeing the light at the end of the tunnel, its small but it's there. We'll get there. It's going to be a LONG road with lots of speech therapy but I have no doubt  that he will be talking. 
I've also noticed a complete change in Karter and Karsen's relationship. They play together! Like real play! Rough, tough, boy, tackling, rough housing play. I still feel like a referee but I think that comes with being a mom in general. It makes me so happy, so overwhelmed with joy to see the two of them play together, something I wasn't sure if I'd ever see. I've worried about Karter hurting Karsen when they rough house but instead Karter is usually the one that catches the up kick on the chin in the midst of rolling around on my bed. Again, never thought Karsen would be able to hang with Karter as rough as they get. Happy mom of boys over here. 
I'm so proud of Karsen, he's so tough, he's endured so much in such a small span of time. He surprises Kuper and I constantly. I'm excited to see what God's plans for our little man is, where he will take us next. We are beyond blessed with such a full life.

Surgery Results

My goodness I have taken way too long to update everyone. Sorry friends. Life got busy. 

Well, surgery has been a huge success. Not for one second do I regret it. For the most part Karsen barely drools. Some days, when he's congested or concentrating really hard, he seems to drool a bit but no where close to what it use to be. No more bibs! I told myself I was going to have a bib burning party but couldn't get myself to throw them out for fear that he would start drooling the minute they would be gone. Silly, I know. So instead, each time I find one, out it goes into the trash. And each time I throw one away, I feel happy for Karsen. So happy he doesn't have to deal with the constant rashes or irritation from drool or the puffy, bothersome bibs that had to be so thick he'd sweat during the summer. So, GOOD BYE bibs, hello big boy Karsen. 

 

Look! He looks like such a big kid!!! 

The surgery itself was a rough bout. Karsen's time slot wasn't until 11:00AM which meant I had to keep him distracted from how hungry and thirsty he was from 5am (when he wakes up) until they take him back into surgery at 12:00PM. He did a lot better than expected. As long as we had planes playing all was well in the world. Just before they put him under, they gave him "happy juice" as they call it. If you've had a kid put under for any reason, I'm sure you've had the pleasure of watching your kids after they have taken the "happy juice". Karsen was hilarious. He kept laughing over nothing. Poking the animals on his hospital gown, and giggling over me touching his nose. It wasn't only good for him to chill and relax, but it helped calm my nerves seeing him happy.

Once he was back and under, I was off to get some much needed food but I really couldn't eat. I had never had that happen to me before. Normally I'm a stress eater, this was a change for me. So I got on my phone and texted a few people, called Kuper and cried of course (even though he said "hey! Look you made it with out crying" and then I cried), and cracked open my bible. For five hours I couldn't take my eyes off the status alert they had with patient numbers accompanied by the status of their surgery. It was comforting and nerve wracking all at the same time. Since they said it would only be about a 2 hour surgery, and five hours had passed I was not sitting easy. But truth be told, I handled it much better than ever expected. I can only give it to one thing, God. I felt at peace, as if He were sitting right next to me say "I got this, don't you worry." When the board finally changed to "in recovery" almost immediately a nurse came out to walk me back. He was just starting to wake up when I walked up to him. He had two nurses, his surgery, and the anesthesiologist by his side. In that same moment of me knowing God was with him and the team surrounding him, Karsen went blue. First his nose, then his lips, then his face. His whole team jumped into action, with in seconds he was back to normal. It was scary but I never worried once. Weird, right?! We waited in recovery for over an hour, waiting to see if he was ok to move to the regular floor or if he would need to be moved to the PICU. After one more time of Karsen turning blue again they decided it was better safe than sorry to move him into PICU. Now let me explain. Karsen was having a hard time breathing, or getting air in is a better way to put it. They gave him morphine for the pain (which can labor breathing), his airway was weak from being in surgery with a tube down his throat for over five hours. The two made for a not so good combination. As soon as the morphine left his system he would be fine. 

Off to the PICU we went, after a quick visit from Kuper and Karter (toys and snacks included). My sister came to visit me, I'm still very grateful for her distraction. She was there to witness yet another one of Karsen's breathing issues. The staff at UC Davis was amazing! They were quick and very nurturing. I would go back there in a heart beat. They got his breathing under control right before Karsen was out for the night. My sister and I talked, laugh, at chocolate and then to bed at went once she left. The next day after all the craziness, we were discharged! The morphine was out of his system, his pain levels seemed fine, his breathing was 100% better and we left, with out a single bib. :-) We haven't looked back since. 

So, yes, the actual surgery was rough but it was SO worth it. And never once did I ever feel like I could lose my little man, God was sitting right next to me, the whole time. Thank you all for all the prayers and support through all of it. 

Tomorrow's the big day

At 1:30PM tomorrow Karsen will be going in for surgery. We feel prepared and ready... well as much as you can be. We have high hopes this will be successful. For those of you that know me well, or know Karsen well, I can't wait to burn his bibs for good but I know better than to expect 100% this will be it. Although I am human and my hopes are up... hard not to be when we have exhausted all other options. 

So if you have a brief moment please say a little prayer. Please pray for the team of surgeons, pray they don't damage any facial nerves (it's super rare to happen but still can), pray for amazing staff that care for my little man as if he were their own, and lastly pray for success. 

I'm nervous, like any other parent, but know that God is watching over Karsen.

Hopefully this is the last picture I post of Karsen with a bib on....

Holy smokes I've been slacking

Since we have some big stuff coming up for Karsen I figured I had the time to update my blog really quick. Yikes! I also notice it's been over two months! What can I say, we've been busy enjoying summer and enjoying a break from chaos.

Karsen is doing amazing. He's starting to run, which makes me super nervous because he ALWAYS falls when he does, but hearing him laugh uncontrollably as Karter and him play tag is the best noise in the world. I've been waiting for this moment, the time where Karter and Karsen can play like "normal" brothers. Even though Karsen can talk, he does a really good job of letting his older brother know if he doesn't like what he's doing. They've also started the true boy rough housing. I welcome it in our house, I grew up rough housing and still love doing it to this day. Some of my best memories are of me running away from my dad squealing down the hallway as I would hear "I'm going to get you!". And here I am, 20+ years later doing the same thing. Making memories, loving every minute. 

Karsen went to a two week summer camp that Karter's preschool puts on. It was chef themed and about the cutest thing you could see was my two boys with aprons and chef hats on. They both had so much fun, Karsen fit right into the routine of school, made me feel more confident in him starting preschool. Karsen's school started August 13th he hasn't gone yet though. I'll get into that later. 

We met with Karsen's new ENT to see if we needed to give Botox another shot or if there were any other options. After much research and discussion we ultimately decided to go forward with surgery and remove two of his salivary glands. I've always seems to take forever to get insurance to approve anything, so went went forward with the paper work and talk and researched. To my surprise insurance approved it three days later. So not even a week to process everything and we had a surgery date, I also expected it would take well over a month to get in. We're going in this coming Tuesday. It all fell into place which made me feel more comfortable with our decision. So because Karsen's surgery is so soon, and he can't be exposed to nasty germs before his procedure, we decided to hold off on preschool until he's recovered. Hopefully he'll get to start preschool with out wearing that darn puffy bib. 

We've introduce some of his constraint therapy here and there just to get him adjusted to his torture device (it really is). He's been doing amazing. He'll turn pages in a book with lefty and is starting to try to pick up toys and release them. I've been blown away by him, once again.

I've been reading this book called The Explosive Child. It's been really helpful on figuring out Karsen and his behavior. I'm only a little bit in but it's already helping. If you have a child with difficult behavior and you have no clue why, this is the book for you. 

Life if pretty good in the Williamson house. We are busy with work, school, soccer (yes, I'm coaching Karter's team), therapy appointments, MOPS (craft coordinator this year) and the usual doctors appointments but we are beyond blessed. 

Couldn't leave you with out a cute Karsen pic, so here's a few.

The torture device

Chef summer school (look at lefty)

Look, they do like each other... Sometimes ;-)

Opinions

Karsen had a packed morning today. We had a session with his OT and then PT directly after. Both of those aren't out of the ordinary for usual Wednesday routine for us but we had an additional appointment after. We met with his ortho. We went over what would be best for Karsen's right food (unaffected foot) since he isn't pronating as much and a went over a plan to make his constraint brace. He got fitted for all together four things. A new AFO, a smaller SMO, a new thumb splint, and a constraint brace for his right arm so we can start doing constraint therapy. (casting his good arm, forcing him to use his affected arm). He did surprisingly well, it was also the first time he actually picked out the color and design on his braces. Out of all things he could pick for his AFO (spiderman, batman, superman, camo, cars and trucks) he ends up picking out skull and cross bones.... didn't see that one coming, and bright lime green for his thumb splint. He definitely has his own opinion now. In the midst of this appointment another mom happened to be there. She asked me questions about Karsen, which I am always happy to share information, and asked how affected he was since his gait is pretty good. I proceeded to tell her his gait is pretty good, but his left hand is pretty affected and his speech is by far our biggest struggle. She then responded to me with something I didn't expect. "I don't really think there is such thing as a speech delay. I think it's parents being lazy and not forcing their child to talk.  You know, like giving them what they want with out having them use words to tell you." (Insert shocked face here). I was so shocked I didn't really respond in a way I would have expected to. I responded with "well,  Karsen has an oral motor delay so it's been a struggle". And that was that, the end of our conversation. Maybe she's on to something here. All those speech and language pathologist wasted all of their time going to school for their career. If someone had told me I just needed to not give Karsen stuff until he spoke with words, well then he'd be talking right now, right?...... OH MY GOSH! Seriously lady! This is a first. I thought I have heard my share of opinions but this one.... wow! After a good 30 minutes later I realized I have grown some pretty thick skin. Two years ago if someone had said something like that to me I would have let it eat me up, take over my day and all my emotions. It didn't affect me that way at all, instead I walked away knowing I'm doing as much as I can to help Karsen. It's that simple. I knew. I didn't doubt myself. I think that's only something that can come in time. 

Besides the packed morning we've had a pretty low key summer so far. We still are going to speech therapy twice a week and seeing some great results but today was the first OT and PT session we had been too since 3 weeks ago. We've been spending lots of time in the pool and lots of time enjoying being home and being a family. Karsen's birthday is just a little over a month away, eeeek! First off, when did my baby decide to turn 3?!  Where did the last year go? I've been trying to think of what would be the best day for Karsen but I still can't figure it out. If we were to have a party there would only be a select few invited since Karsen doesn't do crowds well. I want  this birthday to be one that is amazing for him. He was so drugged for his first birthday, and his second birthday he had such issues with sensory it was a nightmare, this birthday is going to be great I just know it.

Summer with a brief break

Summer is in full swing in the Williamson house. We have the kiddie pool up and filled and have a relatively clear schedule. Karsen went to his final group therapy session last week. It was so bitter sweet, you could tell he had out grown the class, he was ready for the next step. The hard part was saying good bye. Some of those therapists have seen Karsen since he was 7 months old, seen us through some really hard times and have seen Karsen overcome so much. I really thought I was going to have a harder time saying good bye but I knew it was the right timing. My little man isn't so little anymore. He's ready. We have his IEP soon, in two weeks, I'm ready as I'll ever be. I'm pretty sure they'll deny our request for an aide but I am not going down with out a fight. In the mean time, the boys and I have been thoroughly enjoying the break from our crazy typical schedule. It makes me realize why I wanted to be a stay at home mom in the first place, being able to have fun with my boys and watch them grown. 

We've had a brief break from PT and OT but we are still going to speech therapy twice a week. He's been doing really amazing with his speech therapist. It's VERY small steps but they are steps in the right direction. Karsen now say's mama, more, ball, boo, and yeah. He's working really hard on saying Dada and go. He's really close. Now when I say that he's saying these words it doesn't mean you will be able to hear it or understand it. It's still very broken. Mama sounds like mmmmmaaaaaa and more sounds shortened like ma, ball sounds like ba and boo sounds like baaaaaa. Yeah is one that is very clear. Every now and then you'll hear him say "uh ya" it's pretty cute. So as you can tell it's a very slow process for Karsen but it's definitely progress. I'm so proud of his hard work.

My work schedule has picked up a bit with school being out and our nanny being more available. I'm able to start working earlier which is nice but man do I miss my kids. I'm trying to figure out a way to work just one day a week if possible but that wont happen until next year. 

We've started reintroducing oat back into Karsen's diet and he's handling it well. Makes his food choice a lot bigger. We've kind of hit a wall with his feeding therapy. He's really resistant to using a spoon or a fork and is very stuck to a straw sippy. I'm going to have to start branching out soon. I'm going to give him a good month off of no pressure eating then get back to it. 

Next week we meet with his Ortho to get him fit for a new thumb splint (his thumb seems to be stuck in more and tighter than usual) and a new AFO since this kid just keeps growing. They are also going to fit him for a constraint brace. Eeeeek! I'm really nervous about this one. It's a brace for his right arm (his good arm) to keep him from using it to force him to use his lefty. I can already see the frustration and fights that are going to come with this. He's starting to be less resistant to using his lefty so now is a better time to start it than later. 

We are still battling behavior issues, some days are better than others, while others Kuper and I just want to go to bed and start all over again. I'm sure most of this is coming from his lack of being able to communicate properly but I'm starting to think it may be more. I'm going to talk to his neuro the next time we see her. 

Karsen is really doing great in the pool and loves swimming. Only needs water wings! If we can eliminate all the tantrums this summer is going to be great. 

We recently got the boys bunch beds and Karsen has blown us away. He does amazing in it! Doesn't get up to stay out of bed when it's time to go to sleep. I think letting him pick out the lightening mcqueen sheets helped. (he actually loves Matter). Here's a pic of their beds and Karsen showing off his left skills.

 

much needed update

Wowza! I can't believe this much time has passed since I blogged! Life has just been busy. Karsen got bumped up on speech therapy so we get to see the lovely Amy twice a week.  That extra day that been added we just do before hydrotherapy. It seemed not too long ago that Karsen seemed stuck, he seemed to be at his usual plateau. Just as always, with some extra time and lots of hard work things lately have been really falling into place for him. He's starting to try to say m words. They all sound about the same but he's actually trying. The best part? He said Mama on mothers day. Best mothers day gift ever. He now says "uh" for up, every now and then we'll hear him say go, he'll say more and is really trying to say car which sounds more like "ar". Amazing right?
Hydrotherapy has also just taken off. Karsen is now swiming with a puddle jumper on. I was completely caught off gaurd and did not expect him to be able to do that. He's really doing amazing. He's starting to grow so fast now. I'm realizing more and more that my baby is no longer a baby and it's so great to see.
We have Karsen's first IEP (individual education plan) coming up. We have been really busy touring a bunch of different preschools to see which one would be the best fit. That has been really hard. My gut really wants to put him at the same school Karter goes to but I made a promise to myself that I would always look at all options first before I decide. By law they have to offer us a school, and since Karter's school is a private school they can't offer us that one (we'd have to go about it solo, which is totally find if needed). So they are offering us our top pick school (if we had to pick one besides Karter's school) and requesting an aide. I still have no clue if we'll end up going with that school since it's a 45 min drive there but at least we'll have the ball rolling if we need to fight for an aide, which sounds like we'll have to fight. I just want what's best for Karsen and it's so hard to find a school for a typical kid let alone a special needs kid.
Friday we are meeting with an epilepsy specialist to talk about Karsen's previous EEG and see if we need to do a longer one. I'm anxious to hear what the doctor will say and hoping they are good listeners like our neuro has been.
Summer is almost here and I am so excited to get lots of pool time in with the boys. Finally a summer that is going to be a blast for Karsen and not a struggle. Both Karter and Karsen are going to a  two week summer camp at Karter's preschool. I'm so excited to have them both there and to see what they both will learn.
We've been certainly blessed to have so many supportive amazing people in our lives. It's been a crazy road but we're doing alright, actually we are doing way more than alright. Life is good.

A new specialist to add to the list

Kuper and I have always been concern about Karsen and the risk of seizure activity, I don't know if that feeling will ever go away. A couple of weeks ago Karsen and I were snuggling and his left arm (affected arm) did a quick jerk. It was enough for me to be worried and enough for me to call the neurologist. After emails back and forth, Karsen neurologist thought it was best that we see a epilepsy specialist. It's a lot of things bundled into one that lead us to this decision. With the type of seizures he had before, pushing to get an answer sooner is manditory. It's scary just to think that we may be going down this path again. Thankfully the paperwork got pushed through fast, it only took two days to get a phone call to make the appointment. We'll be heading down May 16th. After we meet with them we'll figure out if (most likely when) we'll get an EEG done and how long. It will most likely end up being an in patient 48 hour EEG. I'm not thrilled we have to wait a little over a month to meet with the specialist but it's better than two months. 

Karsen is LOVING this beautiful California weather we are having. The kid LOVES water. He's already asking to turn on the sprinkler. I'm really looking forward to the summer this year. Finally there is so much he can do and enjoy. 

We are checking out two preschools on Friday for Karsen. I'm kind of hoping a kid will have a melt down so I can see how they handle it. So pray for some kid to lose it. lol. I'm nervous and excited for Karsen to go to school. He's growing so fast!

Not much going on

Wow, I've taken quite a break from blogging. Life has been busy. 

Karsen has been plugging along with his usual therapy appointments. He's currently going to physical therapy once a week, occupational therapy once a week, speech therapy once a week, group therapy once a week, hydrotherapy every other week. Phew! Crazy looking at that all written down, it may seem like a lot but it's quite routine for us now. We are gearing up for his transition out of early intervention to the school district. That will officially happen when Karsen turns 3 in July, which is quite perfect since school starts in August. We are touring two schools in El Dorado Hills that are both schools that have combines classes, typical kids and special needs kids. We'll know more next week which school he will go to, we have three different options. It's a lot to take in, a pretty big decision for me.  

No real changes happening. Speech has been a slow slow progress but we are seeing some progress. Karsen is actually able to huff out air to move a bubble, something he was barly able to do with assistance. He's starting to make more variations of sound too. No real changes in his vision, we will see his eye doc in July. Still seizure free! His drool seems a bit better. He's still getting rashes but they are more contained to his chin than his chest or stomach, so that's good. His oral motor skills are getting better which is helping him to control the drool a bit. I'm not sure if we'd do Botox again since we didn't ever see any true results that were worth the pain and time.

Hopefully life will calm down a bit for us at the start of summer. We'll have a break from Karter's preschool, and I'll be done traing. I'm hoping to be able to do lots of fun family trips this summer.

Today I saw a little glimmer of light

It's been a very long road for Karsen's speech. We see his speech therapist once a week and have been doing a ton of work at home here and there with oral motor (feeding, drinking, stimulating his mouth). It's been a lot of work with very little progress. There IS progress though. It's the little things, like his lip closure on spoons, his ability to drink out of a straw with out biting it.  He's getting stronger and is getting there. As far as speech goes we've only really gotten him to make the "ah" sound, which he consistently uses on a daily basis for just about everything his pitch and tone just change with different things.  He's also been able to make the "eye" sound here and there, not a ton, but he has. Every now and then we'll hear an "ee" sound. As you can tell, we've had to take things very slow with Karsen. Ive had my moments of doubt and have voiced them many times to his speech therapist about him never talking. She's squashes those feelings right then and there and has always reassured me he will, it is just going to take a long time. He's having to fight through a lot of brain damage to make this happen. He's amazing, it's not surprise. Well, today my sister called and Karsen wanted to say hi. I told my sister Karsen wanted to say hello. I heald the phone to his ear (he's done this before but all that usually comes out is "aaahhh") and told Karsen to say hello. Next I heard a sweet noise I have never heard before, an "Oh" noise!!!! and it was even dragged out and changed in pitch. He was trying to say HELLO!!!! I pretty much hung up on my sister after I squealed with excitement and immediately called Karsen's speech therapist (whom happens to be a good friend). Tried to get him to say hello to here, he kept shaking his head no. lol I then asked him if he was going to be a turd. "ya" his response. Smarty pants. It's just a glimpse but I can see that we will get there. Still working on quite a few different noises but this is a huge step for him after months of work. So proud of my little man. 

Be thankful for today, be thankful how easy it is for you to form words to make speech. Something I never realized could be so hard for one tiny person (or not so tiny person). He's so strong and has come so far. 

Reading too much may be bad

I recently started reading a book written by a fellow CP mommy. The books goes over their entire journey, from the minute they were expecting and finding out a diagnosis, to all of the middle stuff then to date. Her daughter is now 18 years old. I really enjoyed the book, most of the time, finding comfort in knowing someone else knew what I was going through. At the same time, it was really hard to read about the struggles through school, IEP's and ultimately making the decision to home school. It all was very overwhelming. Stuff I didn't even think to look into. Obviously we have a while before we have to worry about that stuff (actually we will have our first IEP with in the next 6 months so I guess it's not that far off) Our little bubble of denial that got thinner and thinner each month, now seems to be nonexistent.

In the beginning of our journey, I remember the week Karsen was diagnosed, my husband and I talked about how he just needed physical therapy to catch back up. That's it. Just PT. Oh, how naive I was. No one can tell you your child's future, no one can tell you what the road ahead looks like. No one can tell you your child will never talk, as well as telling you they will absolutely talk. I wish there was a crystal ball, tell me what is in front of me, what I can leave behind me and what to look forward too. But that will never happen, and that's ok.

This past week has been an especially hard week. Karsen has started hitting and throwing giant fits, it's beyond typical two year old behavior. Over the last weekend, Kuper and I decided to take the boys bowling. It was fairly close, the bowling alley was most likely not packed and we had no plans. Seemed like a good idea. Well, it wasn't. It was the WORST, and I'm not exaggerating, trip out of the house. Karsen did not want to sit still, he didn't want to wait, he tried to hit me (which he succeeded 80% of the time with perfect palm to face contact) back arching, throwing his body backwards over and over again, hitting himself screaming. This happened over and over again. Kuper and I did our best to keep our composure, we switched holding Karsen, trying to distract him, letting him help us on our turns when all I really wanted to do was curl up in the fetal position and cry. It was exhausting. I wanted to finished our game, I wanted to have fun, I wanted Karter to have fun, I wanted to feel like a normal family. It felt the exact opposite. When we had finally had finished our game and worn out our welcome, Karter and I headed to the car slowly behind my husband and Karsen. I started feeling like I was going to burst into tears, but in that same moment of me having some serious self pity going on, Karter looks up at me and says "That was SO much fun mom, thanks for taking me." OK, we did something right. Our attempts of trying to still enjoy the moment with our oldest worked. I was proud in that moment. Those happy feelings went instantly away when we got home and Karsen immediately started his fit, running away from me. This time, it was 100% because of the lack of communication. Have you ever watched a tv show where all of the people in that instant take were yelling, maybe one was crying, one maybe screaming... you know, the ones where it makes you feel like your head is going to explode if you watch it anymore? It makes me think of a few episodes on Parenthood. Well, that was my life, in that moment. I looked at my husband and said "I'll be back" and just left. I didn't know where I was going or what I was going to do, but it didn't matter. I just needed to leave.I needed to get out of the situation, remove myself all together. My poor husband, as I just up and left him with our two monster children that were rebelling at that very moment. Sorry... Where did I go? The dollar store. Silly, right?! I know! But I just wondered. Looking at the cheap plastic toys, the cheesy craft supplies, and the oh so nasty not good for you in any way food. After 25 minutes of mindless wondering I eventually ended up at a local Mexican restaurant with my girl friend where we had margaritas while she listened while I vented and cried. I'm so grateful for this friendship. She too has a special needs son, our stories are not the same but she gets it. She knew that I just needed to let it out. Those ugly nasty feelings that we shove deep down that have their way of coming up at the worst of times. They have to come out at some point. So there they were, feelings out ugly and all. By the time we left and went our separate ways I began to feel a bit more normal.

I still have my moments of shock, my moments of feeling like this isn't where my life should be, life shouldn't be this hard. I'm only human. I have my ups and downs. I have my moments of feeling weak and my moments of feeling strong. I'm am me, and I know that's enough.

I really have no useful words of wisdom today. I'm no longer in that place I was that day, my friend and a few margaritas helped ease the pain of that day. I'm STILL trying to learn to take things one day at a time. To stop trying to find that crystal ball to tell me the next year or the next month. We are still in the process of trying to figure out how to stop the hitting, how to discipline a special needs kid that can't talk but understands close to everything we say. I guess if I had any useful words it would be to be patient, and even though there may be times where you just want to curl up and cry try to take a step back and and reboot, hold your child, hug your husband, hug yourself. Tomorrow is a new day. 

Has it been that long already

Every time someone starts talking about Valentines day I can't help but cringe. Not only do I not like the holiday one bit, but it also marks the two year anniversary that we were brought very tough news about our child. If you haven't followed my blog since the start you can read about that day here. 

A roller coaster of emotions has been going on through my head the past few days. It's interesting, because before I even realized it was almost upon us (just like last year) I started feeling a little off, a little blue. Don't get me wrong, I am beyond blessed, so grateful for how far Karsen has come and where he has brought our family. But in the same breath, it still hurts to think of that day, when we still wanted to believe there wasn't anything wrong and we were over reacting. Oh how I wish that day would have had better news. But it didn't. And that's ok. We are living one day at a time here, sometimes one hour. We have our great days and our bad days just as any other family out there. 

I still have feelings of regret. Wishing I had cherished every moment of Karsen's infancy, every hour of his baby cuteness. It was so hard, so challenging I rarely enjoyed much of it. It was hard to see the light, hard to see when it would get easier. I remember when Karsen was 14 months old and how I was begging for him to just sleep through the night. I was so sick of getting up for 14 months straight, to nurse him every 2 hours. I'm not joking here people, it was literally that way. Imagine having an inconsolable newborn for 14 months. I was DONE, I didn't understand this "connection" that breastfeeding women talked about, I just felt like a dairy cow. But here I am well over a year later, sad. I miss it. I wish I could have embraced it more, but that sad truth is, I didn't. It is what it is. 

Having those feelings of regret aren't necessarily a bad thing for me. Every time I feel that way, it makes me realize how I don't want to feel that way about this stage. Yes, I want Karsen to talk, yes I want things to not be so hard. But now I can see the light. Things are getting easier, or maybe we have just learned to adapt better, whatever the case it comes easier for us. So, while regret may not be a good thing to feel it does remind me to enjoy the moment. 

Yes, it's been two years, and I can't believe it. That means my baby is going to be three this summer, what?! So much has happened. We've lived through the diagnosis, the set up of therapists, the battle of seizures, firing therapist, finding new therapists, referrals, botox injections, AFO fittings, hand splint fittings, this list could just go on and on. We're doing great, we really are. 

However, with Valentines day still comes the feeling of mourning. The sadness that my child will never have full function of his hand, the constant fear that seizures may come back, the pain I feel when things are so much harder for him, the clumsiness that comes with his poor motor skills, his never ending battle with his rash from drool. It is so hard to see your child in pain, and so hard to see them struggle. It hurts deep down. I wish I could make things different for him but I just can't. I've accepted it, we've moved on, and I do my damn best to make sure he is happy and loved. So while we've had some huge accomplishments in these past two years, Valentines day will forever come with a sting of pain for me. Tread lightly around me friends, it's not an easy day.

Life change

We've had a huge change happen in our house, I'm going back to work. As much as I love being home with my boys, financially it isn't an option anymore, especially if we want to be able to send our kids to a private school. I'm excited to start working again, doing one of the things I love most. (I've been doing hair for 10 years) I'm really excited to get some adult time! I've tried throwing around the idea of going back to work before but I had serious anxiety about working again. I would constantly be worrying about Karsen having a seizure while I'm gone, worrying if he isn't being engaged enough, choking on his food, or drink... there's a lot to be worried about. So, I backed out. Decided if I didn't feel right about it then God would provide, and he did. 

Recently we revisited the whole subject. I decided to start looking for a nanny. Someone I would trust with my boys, someone willing to drive them to appointments, someone with experience with special needs kids, and someone willing to work with my schedule.... when I put that list together I did not trust in God, I did not think we would find someone. Well, God put me in my place, why do I not give him all my problems??? We have found a nanny! Here's why she is so perfect for the job: I've had the opportunity to get to know her over the past year and love her. She's one of Karter's preschool teachers, which means when Karsen goes to preschool she will be there (HUGE bonus). She doesn't mind driving my kids everywhere, and also doesn't mind if they are sick. As if that all weren't good enough... she has a 15 month old little brother who has down syndrome, she has lots of experience with special needs kids. I'm so excited to have her watch my boys. (let's just hope they don't like her more than me lol)

To top all of this off, I found a salon closer to home that's adorable, small, and has three amazing women working there, one of which has been a long time friend who's oldest son has the same speech therapist as Karsen. :-) I really couldn't feel any better about the whole situation. 

So enough work talk, Karsen is still struggling with speech. He's doing really well with his new speech therapist. We also had a breakthrough at hydrotherapy. He was actually trying to pull his legs under him to keep him self floating with his special float suit (it's designed to help but not make him float) His OT and I couldn't almost completely let go of him. 

We are dealing with major behavioral stuff. He's constantly screaming and throwing a fit, he's even resorted to hitting himself. Half the time I know why, the other half I have no clue. It breaks my heart he can't just tell me what's going on.

We are waiting for his referral to go through for a swallow study. We are pretty sure he's been aspirating his water and pretty much any juice. His oral motor delay is hands down or biggest struggle. His rash has been getting worse, which makes me the small amount of botox that was working in our favor is already wearing off. :-/ We are back in the squeaky wheel saddle of annoying doctors until we get our appointment. 

We've moved the TV out of the livingroom. Karsen was constantly asking for it, he would watch it all day every day if we let him. Now he just throws a fit when we don't let him in our room.... not sure if that was a good decision. At least when we are playing it's not in his direct view. any suggestions to stop the tantrums because we wont let him watch tv?

What's next

Over a month has gone by since Karsen has received the botox for his drooling. Results? it minimized it maybe 10-15%. It was not enough. I'm actually quite irritated, we went through the whole process, had Karsen put under, and at the end the specialist (whom visited him all of 20 minutes total before the procedure) decided he would just do two out of the four glands. Why would you put a child through this to have minimal results, also needing to do it again. I didn't want to have to do this again but knew in the bank of my mind, when he told me he decided to only do two, that it wasn't going to be enough. Karsen's rash is definitely better, its not cracked or bleeding like it has been before, but that's just the thing, it's just better, it's not gone. He still has a rash on his chin 100% of the time no matter what we put on it. So, what's next? Well, first off we wait. Why? Well, botox is toxic, you can only inject so much in a 6 month window. He didn't inject the full amount in Karsen but we would be putting him under all over again just to do the same thing he already did, knowing now, he wouldn't see much result. We had an appointment at Shriners just to follow up on all of Karsen. We talked a little about the botox and what was next.... well that's just it, we just don't know what's next. Karsen is very young to be having all of these procedures done for the drooling but in his case we aren't trying to stop the drool, we are trying to stop the rash.  So, now we wait and research. When Karsen is a little older there is another medication we can try. Until then, we just switch bibs out every hour (which reminds me that I need to make him more since his old ones are BAD), putting cream on his rash when needed and coconut oil (yes, I'm crunchy) on at night (when I remember). 

We have increased Karsen's speech therapy. He now goes once a week, which is what he needed. We also switched therapists since we couldn't increase with our current one because of her busy schedule. It was really a win-win though. Karsen's new therapist Karsen already knows. It's my dear friend Amy. He knows her place, he knows her and trusts her. His first session with her went much better than I expected. She was also much more hands on with him, which is what I want, I am by no means a speech therapist and all that hands on stuff is more than I do. Kuper and I are 100% sure that he says "yeah". It's very clear. He always says it when you ask him a question and he responds with his yes head shake and "yeah". He even knows what a lion says.... (not a fox, ;-) that might be a bit much for him) "rar!" I was really doubtful that he would talk, I've even talked to a few of my friends about the big possibility of him never talking. I was really down. It's hard to think you may never hear your childs voice. But I now know I will, just in his perfect timing. 

Karsen recently got a set of stairs with a slide made for him by a sweet family that we know. What a blessing! He LOVES it. He's becoming a pro with stairs. He'll even do really small drops (maybe an inch or two) with out hand rails. He's really doing well. I now can enjoy watching BOTH of my boys play at the park.

We've been having a bit of a struggle with sleep at night. He doesn't need us at all but I can hear him getting restless at night numerous times. It makes me nervous. I always jump the seizure gun on weird activity that's out of the norm for him. Because of the bad sleep at night, his naps are well over two hours. Yesterday he slept for 3 hours and 45 minutes. Today was 2 hours and 30 minutes. Let's hope he's just having some sort of growth spurt. I pray that his seizures aren't back.