Still drooling

It's been over two weeks since the Botox. It can take up to a month to get the full affect but we should be seeing most of it now. And what do we see??? Still drooling. It dropped maybe 10% less but not nearly enough. He's still getting rashes. They are better, not down to his diaper, just remaining on his chin, neck, and a little on his chest. It's an improvement but not enough. For some reason I knew this was going to happen. Maybe I was being pessimistic about, but everything we had tried hadn't worked. So why would this. We have an appointment with his pediatrician in January, so we'll address this whole issue then.

We also had two appointments in Palo Alto last week. One with his neuro and one with his eye doc. He first was with his neuro, who was shocked at how good Karsen's gait was. She expected him to have more of a limp, and swing his leg around more. We talked about Botox later on down the road for his arm, and also constraint therapy. We went over his EEG again, and what to look out for in seizures since they will most likely return. All in all, it was a good appointment even the that ugly work came in.

We then had his ophthalmology appointment, pretty routine. His last appointment his eyes were doing so good she had mentioned not needing glasses soon. I came to the appointment knowing that wouldn't happen since his right eye seemed to be worse again. This puzzled his doctor. She had asked us if there was any. Recent seizure activity. Odd she asked since we still aren't sure. She's worried something might be happening. So now we are back o patching and wearing the glasses 24/7, which we are use to.

I had been talking to his OT, Mary Beth, about all that was going on and had been trying to figure out what we can do for Karsen for his oral motor delay. Something just isn't right, he shouldn't be struggling as much as he is in this department since everything else is moving along. The fear of seizures pops in even more a this point. So, we are in a wait and see process now. I have a lot to discuss with his pediatrician, and also have an email in to his neurologist (I wish that appointment was second so I could have just talked to her in person about all these problems). Karsen, Karter and I have all been fighting a nasty cold since Thursday, just in time to relax for our Christmas break, ha. All we can do is hope and pray. I know God has a plan through all of this.

Sweetest view from my kitchen the other day. My three favorite people in the whole world. I'm am certainly blessed.

Botox, how it went

For the Botox they had to put Karsen under since it was a very exact, precise procedure not to mention painful. Originally Karsen's appointment was set for 10am. He couldn't eat food 8 hours prior and no water or juice two hours prior. Which meant his last meal was dinner the day before. After some emergencies popped in our time got bumped to 12. 

The morning of, Karsen woke up obviously hungry, but I did everything in my power to keep him busy and distracted. We actually had pt at 8:00 so that killed an hour. When we got down to UC Davis we checked in at 11:00' like they told us to, but was delayed another hour because of another emergency. I really was frustrated or upset, these things happen, my child will live, something else is more urgent. Plus, Karsen was doing amazing. As long as I snuggled him and let him play with the iPad he was fine. When we got taken back to our bed, we got seen by the team of people working on him. Five people in all. I felt very protected and safe. The staff there was amazing, very thorough and explained everything to me. Well, with the exception of the Botox specialist, who had poor bed side manners, and was just awkward (I don't know how else to explain it). When they finally took him back his team made sure he was happy the entire way, they all took their job very seriously, one nurse (make that six people on his team), her sole purpose was to make sure Karsen didn't cry. :-) I was really pleased with everything. 

When the anesthesiologist went to put Karsen under he reminded me to stay strong for him. Wow, didn't know how much I needed to hear that. I was able to pull through with no tears up until I got the ok to cry and kiss Karsen goodbye. Tears were flowing. It was so hard seeing Karsen so lifeless, it took me back to his MRI, which was much more scary than this. 

I was showed to the waiting room where I resumed my tears for a good ten minutes. I called Kuper but could only manage to talk for a few minutes.  I was told ahead of time, that it could take up to four hours. So, I posted up. iPad ready, text my friends, my family, and all my prayer warriors. Just when I was getting settled (about 45 mins), the nurse in charge of no tears came to get me and told me he was ready. What?! Yay! They waited to walk him to recovery until I was present. There we walked, all six of his team and Karsen snuggled up. All I could see of him was his little nose and mouth where they had a breathing mask. 

Once we sat down in recovery the anesthesiologist spoke to me about the procedure and warning signs to keep an eye out for. The whole thing went flawless. He did great, didn't need to incubate him. Praise God. The Botox specialist then talked to me about how his end went. He ended up not using a full dose, and only did two out of the four glands, he didn't want to damage any nerves. I was grateful for his least invasive approach but also hope that we didn't go through this whole procedure for nothing. 

After two hours in recovery, he woke up immediately signing cereal, he was hungry. We got cleared to go home at 4:00. I was thrilled. I scooped up my sweet boy and headed out to our car. He then proceeded to eat enough in that next hour to make up for the rest of the day, one hour later, he puked it up :-( but wasn't bugged by it, not sure if he over ate or if it was the anesthesia. Either way, it was a small hiccup. 

We are four days post injections, today as the first day it seemed maybe ten percent better. It can take up to a month for the full affect to come into play. Please continue to pray for my little man. 

I forgot to mention how at peace I was while in the waiting room. I knew and could feel Gods presence. So, thank you for all the prayers.

Here's some pictures the day of. 

All in all, Karsen has done really wel. He has some slight bruising from the injection site but that's all. Fingers crossed this works!

Two days is the day

Finally the day has come! Today we head out to UC Davis where Karsen will be getting Botox injections into all of his salivary glands. I'm on a roller coaster of emotions right now. I'm anxious, nervous, excited all in one. My hope is his will work. I'm nervous about him being put under again. The last time was when he was 7 months old and it was rough. What should have taken forty five minutes took well over four hours. This time, let's hope it's much different. 

Karsen is extra cranky this morning since he hasn't had any food and in about an hour will be cut off of liquids. :-( I hate having to do this to him. All he keeps doing is crying and signing cereal to me. I'm so sorry sweet boy, hopefully this will all be worth it. 

I plan on writing a post with out whole expirience with it after a couple of days, when the Botox takes affect. Please say a little prayer for Karsen and his team of doctors working on him today.

Finally

After many phones, many weeks, too many months we finally have our appointment for the Botox! Friday! So excited we are getting it done before Christmas. The best gift to give to us is a rsh free Christmas. Fingers crossed it works. In some cases it didn't work at all. Let's hope that's not us. 

So, Friday we have to go through the process that anyone else does for surgery, even though it's not surgery. He will have to be put under, which makes me nervous, but they do it every day to kids much younger. No food eight hours before, no fluids two hours before. Good thing our appointment is at 11:00am. I have no clue the actual procedure will take, we'll find out that day. 

It can take up to a week for the Botox to take full affect. I'm hoping for less than that but I guess I can be a little more patient. 

I'm praying so hard this works. I am SO ready to be done with the piles of laundry from one single day, and the constant rashes that irritate Karsen to the point of bleeding. Please say a little prayer on Friday for us. Kuper can't get work off so I will be flying solo. I already expect to be a mess when they put him under, I was over a year ago, I will be on Friday, and that's ok.so if you have the time, please shoot a quick prayer for us.

Hope you had a fabulous thanksgiving! Oh and Karsen's favorite was the stuffing and the pumkpin pie. :-) I love seeing him enjoy food, it was not that long ago eating was a huge challenge for him.

One little signature

That's what we are waiting for now. One stupid small signature at the bottom of a form stating Karsen's drool didn't respond to the robinul. Ahhhhh! I want pt pull out my hair! Pull it together people! We've been waiting how long? In the mean time, Karsen's seems to be more irritated by his rash than usual. I'm trying my best to stay calm about it, but man, seriously?! Not understand why this processes is taking so long. It's not like we are the first ever to need a referral for Botox. Bahhhh! Ok, I'm done throwing my fit now.

In other news, Karsen has been doing great. I'm starting to feel like we have hit our typical plateau. We had a lot of big accomplishments, so I knew this would happen. Life is getting easier and harder all at the same time. Karsen throws fits more than Karter ever has, and I know it's his lack of communication, his inability to speak words and tell us he doesn't want to. The newest? The car seat protest. Anyone else deal with this? I had it with Karter as well, but just like everything else with Karsen, it gets stretch out over a longer period of time. Karsen has now decided he wants to sit at the table like a big boy, so out went the high chair. One less chunky baby device in my house. Woo hoo! We also switched over to a toddler bed. He's done great! Goes to bed super easy, just like he would in his crib. But we are dealing with earlier wake ups, which I'm sure will eventually stop. I can't remember if Karter went through this or not. We are still on seizure watch, as always, but no signs of any (insert happy dance). He's starting to get really good at eating yogurt all by himself, and is letting less water fall back out of his mouth when he's drinking out of his now newly cut short straws. It really has helped. If anyone is reading this is having issues with lip closer for their child and wants tips I'd be happy to share. Just leave me a comment. Oh and I finally got around to ordering a back up pair of glasses for Karsen, since his new favorite thing to do is hide them from me weeks on end, little stinker.

Still have yet to hear any words. Even talked to his speech therapist today about it. Had a deep conversation about communicative devices. We aren't there yet, and won't give up on his speech ( EVER!) but it's something we need to keep in mind. I want my sweet boy to talk. I want so badly to her par him yell mama, any word would do. I'm beyond proud of him, he's come so far, but it's really hard for me to think if he may never speak, never talk. It's a tough road travelled but worth every bump and scrap along the way.

We get a therapy break for thanksgiving. I'm even thinking of taking my boys out of town for a bit, get away from the house, the cleaning, the laundry and just enjoy my boys. Any fun ideas for that week of break?

We should all be on the same side

Parenting is hard. Its challenging, frustrating, exhausting, and rewarding all bundled into one. For me this past two years has been, more than anything, emotionally exhausting. I've learned to grow thicker skin. And no, I didn't learn to grow it for my kids, I learned from other parents, other adults.

I would like to know when, we as parents, were no longer on the same team? When did we stop trying to lift each other up, when did we stop encouraging each other to keep at it? When did we decide to start judging each other so harshly and therefore being so harsh on ourselves?

I had something happen today that was out of no ordinary for me. If you have a special needs child or even just a difficult child or a strong willed child.... well, lets just say if you have a child.... you've had your moments of melt downs in public, the fits where everyone stares and you can almost feel the burn of every set of eyes on you. I was unfortunate enough to have two of these moments in a matter of an hour in two different locations.

Time one: in the doctors office waiting for Karsen's hearing test. They told to me to come in a little before 9:45 since we are a new patient to fill out paper work. Ok, no biggy. We get there 15 mins early. I'm feeling pretty proud of myself right now, that's a first in a while. I fill out the paperwork all while trying to keep Karsen away from that darn water machine and Karter is sitting oh so patiently and acting like an angel (this is odd). I finish the paperwork right at 9;45. Boom! Doctor then in turn runs 25 mins late! are you kidding me?! Since my boys are the only ones in the office I decided to let them tickle each other. They LOVE this game and who doens't love the sound of little boy giggles?! 5 minutes later it ends in a hard fall with Karsen, a goose egg on his head and the lady behind the counter whispering to the other gal "That's why you don't let your kids run around". Ok judgey lady. whatever. I brush it off. I was doing what I had to given my situation. he could have fallen doing anything.

Time two:

Karter was in serious need of shoes, so we went to do some quick shoe shopping. I got the shoes, paid, and then shortly realized the $20 off wasn't applied. Had to in turn go to the service desk to get it fixed. At this point I was impressed that my boys were behaving so well. We finish up, walk out to the car and Karsen drops his snack. Oh the world ended. I picked him up and tried to calm him down. He was tired, cranky, sad, hungry all rolled into one. He began hitting me, hitting himself, bit me, screaming drawing all sorts of attention to me. Ive dealt with this before, it's nothing knew. As I talked to him explaining to him what I was doing I could feel that burn. The eye burn. I shouldn't have even looked but I did. When I turned around, this woman about my age looks straight at me and rolls her eyes. I continued to fix my situation, loaded my boys up and drove off.

After both situations all I could think about is how rude and judgmental people can be, and how sad it was that we don't try to encourage each other. Don't get me wrong, my friends are great, my family is great. I have felt nothing but love and encouragement from them when it comes to dealing with my children and going through the hard stuff. But strangers, it's very rare to have someone encourage you along, to give you that "I know what you're going through" smile.

I know before I had kids I thought the same thing, I did the same things and I remember telling myself that I will never raise my voice at my children and I will never have  a child that bites or hits, that will not be tolerated. Well guess what?! It's not your choice. You're given what God has given you. Boy has it been a humbling experience. We need to stop passing judgment and start encouraging other moms and others dads. Let them know they aren't alone and yes it is hard and if you're child says they hate you (thank you Karter for my first of many) that you're doing something right. So, here's my letter to those eye rollers.

Dear Rude Judgey Lady,

The next time you want to roll your eyes at me put yourself in my shoes. What good has come from your eye roll? Know that I see you.Know that it's hurtful. Know that a simple dirty look can hurt for the rest of the day, or ever a week. Remember that each child is unique, each situation is complex and different. Give an encouraging smile, a sympathetic grin. Go out of your way to tell that mom they are doing a good job staying strong. Heck, treat them to a Starbucks or a candy, or you could even ignore the situation all together. This thing called parenting isn't easy, but it can make it feel a lot breezier if you stop passing your judgment and start encouraging and uplifting others to keep at it.

Sincerely,

A mom that is constantly struggling and praying to become the mother God intended her to be and is a doing a pretty darn good job

EEG results

Our neurologist called yesterday to let us know the results of the EEG. The good news? His infantile spasms has not returned. The bad news? His EEG is very irregular and puts him at very high risk for seizures. So what do we do? The same thing we have been doing, watch him like a hawk. I wish she was able to tell me what movement to look out for but every brain is different as well as every body. So we just watch for any/all. I knew that he would always be high risk for seizures, especially since he had them before. It's nice to be able to check off infantile spasms off of his medical chart....well, ok it will still be there, but it is no longer a current diagnosis. :-)

Karsen has his hearing test this morning. I'm ready to get some answers and see if his hearing is at all a contributing factor to the lack of speech. 

Tonight the boys are going trick or treating (a small neighbor hood) and then going to a trunk or treat. Karsen is going as a monkey (fingers crossed that the costume fits him), if that doesn't work out we are going to do Clark Kent. Put a super man shirt under a white button up. I figured it was a perfect fit with his glasses. Karter (Karsen's older brother) is going to be a power ranger. I always envy those moms that come up with these super cute matching, or family costumes but that's just not me. I will be going as a mom and I will admire all the cute costumes out there. ;-)

I hope you are all having a fabulous Halloween. If you are handing out candy keep in mind of the many issues some kids may have, some may be non verbal, some may have a sensory disorder, there is so much more. I know tonight might be hard on Karsen and I can only hope and pray people are understanding. Be safe, check your child's candy (steal a few for yourself), and never take your eye off your kid for one second in crowded areas. Ok enough mom talk. Happy Halloween!!!!!

Hearing test

We heard back from the audiologist already! Woo hoo! Referral work went through fast (unlike the Botox! Grrrrr) and we got in for an appointment fast, this Thursday. I'm anxious to get the results but not nervous at all. Whatever the results it won't change a thing for me, just might give me more answers. I talked to our gal in charge of Karsens medical chart and found out our ENT (the guy sending the referral paper work for the Botox) forgot an extra form that has Togo with it. Seriously?! Yet another thing to put it off another week. 

We still haven't heard back from our neuro for the EEG results so I'm going to pick up the phone right after I finish this little up date. Fingers crossed and praying they didn't find anything. I HATE seizure meds and all their side affects. 

Today we went to a friends house for a play date and decorated pumpkins. Karsen wasn't in the best mood and was crying about nearly everything. He did however have fun painting his pumpkin for the brief five minutes (if that) that I got him to sit down and paint. It was nice taking a break from our crazy life to just go to a play date. Thinking we should plans these more often so my kids can have some fun with their friends as well as me! 

Here's some sweet pics from today.

Karsen's pumpkin was the biggest one (fresh from our garden.) Karter's is the one with the green eyes on the right of Karsen's

Are you ready for Halloween??? It will sure be fun watching Karsen be able to walk to go trick or treating. I remember not being sure if he would by now. Boy did he shock us all. He's a rock star. So proud of how far he has come!

more, more, more and more busy

Wow! I can't believe how long it has been since I've done an up date. Karsen has been doing so good, and we've kept real busy that I haven't had the time to sit down in front of the computer and put something down. 

First comes first, we are STILL waiting on the referral paper work to go through for the botox. :-/ Fortunately I was squeaky enough they assigned someone to Karsen's file to call every morning to see if it went through, and in return call me to let me know the up date. It pays to be annoying. ;-)

We put in a request to get Karsen's hearing checked. Just another thing we need to double check to see if that's the reason for no speech. When he had his newborn screening done, it took them a while to get a read off of his left ear (at the time we had no clue what had happened to Karsen in utero, so we didn't think anything of it.) Waiting for the referral to go through on that as well.

Kuper and I have been a little worried about night seizure activity after some weird twitching that happened one night a little bit ago. Our neurologist agreed we should get an EEG to be safe. You can never be too safe when it comes to seizures. So, Friday Karsen had a sleep deprived EEG and was a total rock star. I had to keep him up until midnight the night before and wake him up at 5:30am to get in the car and drive three hours to his appointment. He did great. Didn't complain once. He blew me away when they put his leads on, not a single tear or argument. Quite the polar opposite of his last EEG. He fell asleep easily and sat through the strobe light smiling (silly kid), and also let us "play" peek a boo while they held his eyes closed for ten seconds twice. Seriously, I was blown away. We didn't get the results that day and still haven't gotten them but I'm awkwardly at peace with the situation. God has a plan, he's gotten us through it before, and he'll do it again.

Karsen has been doing amazing, starting to act like a typical two year old. In fact, he went to a 2 year olds birthday party yesterday with lots of other kids (in the past parties have been a nightmare and things I started to dread) and he did great, had so much fun playing and walking all over the place. For a brief moment I forgot about his CP ( and I mean brief).

Speech therapy was a little difficult today, he didn't want to do much. His sleep schedule has been completely thrown off after Friday. He was asking to go to bed for a nap at 10am. I think it might take us a few days to get back into routine.  We also discovered that tongue movement is very hard for him so that's another thing we need to check of our list to make sure that connection under his tongue isn't too tight.

We have an appointment with his ophthalmologist next week. They'll dilate him and see how his progress has been. The last time we were there we talked about the possibility of not needing the glasses. We lost the glasses for about a month (thank you my sweet boy for hiding them under the crib) and during that period of time I couldn't help but see how his eyes were still crossing, especially his right eye. So, I don't think we'll get to ditch the glasses any time soon.

So, we are once again in the phase of waiting for paperwork and dates to pop up. We have the audiologist, and the botox we are waiting on (the good news is once they approve the botox we go straight in for the procedure, no clinic appointment necessary. I'm so ready to not see that rash on his chin!) We have a regular check up appointment for both boys with their fab pediatrician soon, and then the eye appointment. Busy, busy.  Things are going so smoothly for us though so I really can't complain. (I never thought I would say that, lol)

Here's some pics of the EEG on Friday.

Seven phone calls later

We have been waiting for the paper work to go through and phone calls to be made to see what's going to happen next with Karsen and the botox. In the mean time, his rash has been holding strong and not getting any better, which irritates me even more that we've been put on hold. Well, I've been doing my best at being a squeaky wheel. Three weeks ago I got a phone call that our insurance approved the consult with the botox specialist. Woo hoo! When I got that phone call they left me a number to call if I didn't hear back from them in a week to schedule the appointment..... well, I dropped the ball. I lost the number. Which is not like me at all! I have two GIANT binders with Karsen's medical stuff in it and the number is no where to be found. So a week past, I picked up the phone and called our original doctor that put in for the consult. Got the run around, got transferred to three different people to be told that they just received the referral and would call me with in the week. Who the heck did I talk to then??? I was confused but decided to let it rest, it's drool/rash. I can hang for another week, we've been at it for over 18 months what's a one more. A week passes, I pick up the phone. I talked to seven, SEVEN, different people all not knowing what was going on until the final one got to the botttom of things. The referral was done wrong. PERFECT! I finally got the right number to call back, stored it in my phone!, and was told to call back if we didn't hear back from them by Friday. I'm really glad I know how to squeak, who knows how long it would have been before someone figured that out if ever. We wait, again..... 

We had an OT session this morning with the fabulous MB. We just love her! I sometimes wish my boys had a sitter so she and I can just hang out and have coffee (or wine ;-)) and chat. We started working on his feeding a bit more today, and it went surprisingly well. Spoon feeding, working on him sucking his upper lip in. Boy was he concentrated and trying very hard, left hand tight and close in, toes curled. It's going to be a long road but I know Karsen will get there. It will be nice to stop having to change his whole outfit after he drinks anything. The laundry is a bit much (hence why I have stopped cloth diapering).

Karsen has really been a big boy. I feel like we are moving out of young toddler. He's got so much personality and really knows what he wants to do. The other day I asked him to pick out a book and bring it to me. He walked over, picked a book, and sat down with me. After finishing the book I asked him if he wanted to pick out another, up he went to go pick another. When I started reading the second book, he closed the book, looked at the cover, shook his head no and got up to pick up a different book. I guess it wasn't the book he wanted. :-) He's really starting to grow up. That gap of time lost he had to make up for is really starting to close. We just gotta get the speech going. He signs more and more every day. Today when I asked him to say Mama he signed it with out hesitation. My sweet boy, melts my heart.

Thanks to a dear friend, we will be trying out hydrotherapy with Karsen. She has a heated indoor pool. MB will be taking a shot at our first session. Fingers crossed it goes good. 

Look at that hand clinched so tight. That's some serious concentration. 

 He's such a big boy now, sitting at the table with his brother for snack. Good bye high chair, hello bench.

An easy day

Fridays are my day alone with Karsen until Kartergets home from preschool. It's weird being out with just one child, it feels a lot like missing a limb. This morning I decided to join a couple of my friends in a boot camp class right after school drop off. It worked out perfectly, I really had no excuse to not go. I was already down the hill, had no therapy, nothing looming over my head. I of course forgot the stroller so Karsen went in the ergo. Lunges, planks, weights all with him on my back and he was quite content. It was the first time in a long time Karsen seemed happy 99% of the time, for a split second he thought I was leaving him, once he realized I wasn't, all was ok. When we hoped in the car he was all smiles, super happy, making funny faces at me in the mirror, chatting, it was a really nice morning. It was the first time in a long time I didn't feel over whelmed by his pain, his frustration, the first time ever I forgot for a split second he was special needs. It's just a glimpse that more of these days will come, I know they will.It makes my heart happy to see my little man be lit up with a smile on his face all day.

On another topic, we are waiting for a phone call from another doctor to schedule the Botox. From one referral to the next. We got referred out to a guy who specializes in Botox injections in salivary glands. I will gladly wait for the paper work to go through. We already heard from our insurance that they approved it (insert happy dance here). So now we are just waiting for their schedule to clear up. 

Karsen is really doing great. Starting to walk more and more confidently every day. He's been able to master going up stairs with a hand rail by himself. We are seeing more and more signs every day. Still not any defined words, but I have faith he will.

Karsen trying to stick his tongue out, silly boy.

A plea to moms with typical kids

Today I took my boys to all star gymnastics for their "free play" time. I thought it would be good for both kids and I very rarely get to take them to stuff like that because of crazy schedules, but today happened to be free. Two of my girl friends and their little ones, also special needs, joined us. After being there for just a few minutes I could tell I was going to have a problem with two little ones that were running around. One of which was wild, in your face, very aggressive while her sister (yes, that's right, they were related) was younger (if i had to guess i would say just over a year old) and was curious like any other one year old, and was testing her boundaries, which apparently were pretty far. She pushed Karsen and Karter out of her way to get on the slide before them. Ok, no big deal, typical toddler behavior. But what was bad, which was clearly the root of the problem, was her mom sitting right next to the slide NOT SAYING A WORD to her daughter about what was wrong and how to do it the right way. Her mom was so much in her own world and not paying attention, the littlest one started to fall from the top of the slide, would have fallen pretty far, but was saved by a coach there. Mom didn't see any of it, not even the part where the coach helped her back up the slide. This was one of very many things her children were doing. I really don't need to get into what else what happened while we were there, what I feel like I need to touch on being more attentive and proactive. Whether you chose to have children or had a "oopsie" we all have to step up to the plate. Being a parent is the hardest, most exhausting, most physically and emotionally demanding job. You only get breaks if you pay and schedule them and you are ALWAYS on the spot. One of the best things I've heard was to show your kids you make mistakes too. It happens, we aren't perfect, and when I have raised my voice at Karter and let myself get too mad I waited until I cooled down and told Karter that I was sorry and I shouldn't have done that. It really hit somewhere for him and for me as well. Ok, I'm getting a little off track here. What I wanted to talk about is the parents that go to the park with their kids, or a free play at a gym and take it as time to relax and ignore your kids and let them run around like wild beast. Wrong! It's never a break, you're kids are waiting for you to not look, they are waiting for you to not pay attention so they can act like beast while knocking kids over, pushing kids out of the way and using equipment improperly. Do you see where I am going with this? Your job is never done when you are present. What made me more mad about today's situation more than anything is me telling these kids what to do all while not hearing a peep out of their mom and having my boys be hurt by them. Yes, I am the definition of mama bear, and I will attack. So, after I left today I really wanted to blog about this mom (well. I guess I already did) but then realized I really needed to blog about how to help yourself and your kids understand and play with special needs kids.

First off, no two special needs kids are the same. So not all of this will apply to certain special needs kids. Some kids may be blind, some maybe deaf, some may be mute, some may have a physical delay or a cognitive delay. Here's a few suggestions of what you can do when you go to a park or a play date and you see a special needs kid.

1. Always, always remind your kids to be gentle.

2. Talk to them, say hi, encourage your child to say hi.

3. If there is a chance to do something sitting with a child that isn't mobile, sit down and play sitting beside each other.

4. Talk to them like you would any other kid, chances are they understand you they just don't know how to communicate back.

5. Ask mom what their child likes to do and encourage your child to help in that kind of play. 

6. Try to keep playfully mean comments out, if your child makes one, correct them. (Example: Karsen has been called drool monster. May seem fun to the kids but it hurts me in a place not many will understand)

I guess as I start to read these to myself I can sum it up into a few things. Always try to include each child in your play. No one likes to be left out. Tell your child why that child can't play certain ways, encourage your child to talk to them, treat special needs kids just like you would a normal kid, show them compassion and friendship. Shouldn't we all be treating each other that way?

The next opportunity I get, when around a mom like I was today, I just may say something to her in a loving way to encourage her to be a part of it, to be a part of her kids and be a part of the community. What will you do differently? I know I will be leaving my phone in the car while at a park, I will be wearing yoga pants and a ponytail so I too can play on the swings and slides. Nothing in that moment is as important as your kids. Soak up every ounce you can, they aren't going to be little forever.

We have a full time walker

It's official, Karsen has taken off. Today, Karter had a preschool field trip at a water park. Perfectly enough, Karsen's pt got cancelled because of a staff meeting so we were all able to go. Karsen was everywhere! He was walking on the cement (which still makes me nervous) and then continued on uneven surfaces like the wood chip area of the playground. I was impressed. He didn't butt scoot once. In fact he would get mad when he would need to sit down for a second. It was exhausting for me but also really near to see Karsen keep up with kids just a bit younger than him. Next, we just need to tackle going upstairs and getting up on his own to stand without holding on to things, then it will be really fun at the park. I feel like we are finally moving out of baby zone and into toddler territory. Well, we've been here and he understands more than kids just entering toddler territory, so I guess it just feels more comfortable to be here now. Happy to be here, proud to be here, and oh so ready.

Waiting to hear back

We had our first appointment today with Karsen's newest member on his team, his pediatric ENT. It went surprisingly smooth.  Both boys were angels and Karsen even put up with the doctor looking down his throats and ears. I was impressed. The only hiccup we had was finding Karsen's new fear of elevators. He would not let go of me, holding on as tight as he could while screaming his head off. I don't blame him, I'm not a huge fan either. I came to the appointment guns a loaded. Had loads of pictures of Karsen's rash along with our attempts to stop his drool/ash in any other way. What do you know, I didn't need a single one! The doctor actually listened to me! So we have a plan, we are deciding to go the Botox route. I know, Botox for my two year old?! Pretty cool. The doctor wants to talk to a fellow pediatric ENT to find the best route to take, then he's calling me back to schedule the appointment. Karsen will have to be put under for this but it isn't surgery. We're hoping this will be the trick to stopping it for awhile, and when it slowly wears off he'll be able to learn to control it more. 

So all in all, it was a good trip. Mission accomplished and I didn't even have to squeak once ;-)

Can't keep up

I'm proud to say I almost can't keep up with the amount of signs that Karsen picks up daily. It seems like he picks up a new one a day to every other day. The communication frustration has really gotten a lot better. Now I just think we are dealing with normal toddler behavior and outbursts. There's still that extra frustration level for him that I think is more than normal toddler behavior and yes I still get stared at but it's not as bad as it use to be. Here's what Karsen currently signs: 

Water

Milk (only a handful of times)

More

All done

Bye

Yes

No

Cereal

Thank you

Please

Bubbles

Chicken (I think he thinks all birds are chickens)

Dog

Hot

Go

Up

Down

Were still working on:

Mommy

Daddy

Want

Cracker

I'm looking for suggestions of some signs to work on too. If you can think of any I'd love to hear from you.

On another good note, Karsen is starting to get really brave and is walking across the living room to other furniture. He's doing so good. We had a bit of a set back over the weekend. He and I both got sick and it always seems he looses a bit of motor function when he get sick. But hey, don't we all just want to lay around and be slugs when we are sick?

Things are really starting to move along here in the Williamson house. We are started to get use to our new normal of preschool and therapy sessions. The best part? I have two hours during the week where I can read a book or go for a run, do whatever I please in those two one hour time slots. It was quite nice today to start reading a book again, for fun! Haven't read a book for fun in a while. 

One of Karsen's favorite places to be, our garden. He loves playing the rocks while I pick my veggies and pull the weeds. I love my country boy.

Six flags walkin' fun

We had the opportunity to join my friend and her four kids to six flags on Monday. It was a day for Karsen, a day to celebrate him walking and let him enjoy six flags to its fullest. He had a blast! I was a little bummed after the first four rides not a single person asked to see him walk three steps. Poo! But then the very last ride we went on they asked for Karsen to take a few steps before getting on the ride, I was thrilled. My over joyed response was a dead five away that he had just started walking. 

Here's a few pics from our fabulous day!

He was so excited about the dolphin show, he kept signing water and even said "wawa" twice! 

I'm beyond blessed to have my friend Amy in my life. Her daughter is in Karsen group class. There was no mistake putting us in each others lives.... Well no mistake in God putting her in mine at least. ;-)

He's walking

After a few bad days, things are starting to look up. Yesterday we had an appointment with Karsen's eye doc. While waiting in the exam room Karsen decided to free stand for a minute and a half (yes, I counted). The doctor came in, was shocked at how well Karsen was doing considering his medical chart and also said there's a good possibility his eyes may have strengthened enough to no longer need the glasses. Twelve more weeks and we'll check it out to see. Woo hoo! First good visit in a while. 

Bright and arly this morning we headed to pt. Karsen did great. Didn't fuss one bit. Off the run a few errands then to group. Well, after I was telling a dear friend that Karsen free stood for a minute and a half yesterday, he just started walking. I'm not joking, he took 8 steps, then 15 steps then was walking all the way across the room. I got chills, I started getting chocked up. We both needed some good news. He was doing his best by showing off for his speech therapist by signing up a storm. Today was a good day. I have a feeling the rest of this week will follow. 

My dear friend, Amy, has season passes to six flags and guest passes as well.  Apparently they want kids to be able to take three steps before you can get on their rides. Well, looks like we're heading out Monday. Quite the treat for my little man, and boy does he deserve it.

One of those days

This morning we all woke up bright and early and for some odd reason I thought today was a good day to keep technology away from the kids, no tv, no cell phone, no iPad. Someone remind me again why I did this?.... No, really I'm glad I did, I needed to start somewhere. So, we started our day with Karsen screaming and pointing at the tv while Kuper and I made every attempt to distract him with toys, food, books, you name it. That was only the beginning. 

Off we went to Shriners. Not all of us, just me and the boys (Kuper works Monday-Friday and frequent Saturdays). I have never had a problem going places solo, well, solo with the boys that is. When I go places really solo, no kids, no baby, no child stuck to my hip, tugging on my pants, it's weird and awkward and I don't know what to do with myself. That's a whole different topic I won't get into today. We drove to sac, me and the boys, and I forgot my coffee.... This day was not going to be good. When we first showed up we were immediately moved over to radiology to get an X-ray  of Karsen's hips. We skipped it last visit so they wanted it this time. The hips and legs are good! The we waited for our doctor. We were fist seen by two other doctors, one was there for training. We went over Karsen's full history. I didn't mind, I'm all for educating doctors more especially when it comes to infantile spasms. After those two left, in came our regular doctor. At this point Karsen has had enough. He's been held down to a able for an X-ray, checked range of motion on all limbs, stretch, weighed, blood pressure checked and not another doctor wanted to look at his rash, which was on his leg today as well (because of drool soaking his pants, it's that bad). I had the hardest time hearing the doctor talk to me because all I could hear was Karsen screaming and crying, all while he continued to hit me and pull my hair and Karter is laying on the floor playing with his toy, yes the nasty, germ ridden dirty floor... I started to feel it creep up on me... You know, that feeling you get when it's all too much.... It was the chaos that was causing is, it was what the doctor was saying. In the midst of screams, car noises and hair pulling I could hear the doctor telling us to try this cream and let him know if it doesn't work. ARE YOU KIDDING ME?! It started to creep up even more, my adrenaline started to pump. Out walked the doctor to get this cream, and all I could do was sit still. What the heck do I do?! In comes the doctor, he hands me the cream and asks me if I have any questions. This isn't a first for me, and I'm sure it's not the last but I just started crying. I opened up the flood gates. In that moment I think the doctor knew he wasn't going to be able to us the cream and call it good. After 15 more minutes of discussing our options (while both kids are not behaving how I would wish, but I honestly didn't care at that point). We had decided to start the process for a referral for an ENT doc. Thanks goodness! We are making some movement here. We left on a good note, I wiped my eyes,  picked up my truant rum throwing, back arching, face hitting, shirt ripping toddler, and my sweet germ covered child and headed for our car.  We got loaded up and started to make our way toward home with the plans of running a few errands. 

Met my girl friend for lunch, both boys got a quick power nap and seemed so much better. Got seated(but apparently they sat us in the wrong spot) and decided to move us. I really feel bad for the girl but I WAS NOT HAPPY! Well, the move must have not been ok wi Karsen either. The melt down began, in the middle of the restaurant. Thankfully Karter was coloring and writing K's, happy as can be. But it took a solid 10 minutes of screaming, and I mean screaming, and me trying everything under the sun..... Except for one thing. Out comes the phone and on goes Mickey. I caved. I had to. If I didn't want to completely loose it Mickey had to be out on. In the midst of the 10 minutes of screaming, I started crying AGAIN! Ugh... Public place, plenty of people staring at me because of Karsen, and my poor friend that has no kids, dealing with what a circus my day had been. Mickey cured all.... For about 30 mins. It was 30 mins of peace and I was able to gain some composure. 

We left and started our few errands. Babies r us, Rodgers jewelry, gas station, then I decided to take the boys to the park. But before all of that Kuper called me to see how the appointment went. I lost it, AGAIN, cried like a baby. What on earth is wrong with me?! Nothing about this has been easy. No moment in raising Karsen did I say "wow, that was a breeze." In fact, I think in some ways it's gotten harder. I wasn't crying for me (ok, maybe some of it was)but crying because I can see how badly Karsen wants to talk, walk, not drool, all stuff other two year olds get that comes easy. I hate that he has so many appointments that he clearly hates. After I got off the phone with Kuper, Karter asked me why I was crying. I proceeded to tell him "I get sad every now and then for you and Karsen. I worry that I won't be a good enough mommy. I want you and your brother to be the best of friends and protect each other and be there for each other." He hopped in my lap, held me tight, told me "its ok to cry, it's ok to be sad. Karsen and I are already best friends, he's the bestest ever. I love you mommy." I'm crying now just haring that again in my mind, in my heart. I've been busting my butt with this kids when I fail to remember they are already bonded, they are Gods perfect gift. And yes it is more than ok to cry and be sad.

We finished our errands, hit the park and burned off some energy. It was exactly what I needed. I needed to see the joy and happiness in both my boys. Pushing each of them in the swings side by side, tickling them nd making them laugh was the best dose of medicine I could of had. No drug can give you the high that I got today from that brief moment. They are beautiful, they are driven, they are wise, they are compassionate, they are selfless, and they are only kids. Maybe I should start taking cues from my kids because, wow, they are pretty amazing.

Camping with a special needs toddler

Yikes! That about sums up how I felt camping last week. We have a tent trailer which makes things easier with kids but doesn't change any of the issues outside of cooking and sleeping. (Not to mention our pump went out so showers didn't happen either). All in all we had a fun time. We had a lot of extended family there who were all a huge help. It made it a little mini vacation for me. I got to go kayaking with my mom and cousin, then for a morning trail run and kayaking again with my hubby. Those moments were just what I needed. 

Since Karsen is still not walking we had to really embrace the dirty part of camping. There was never a moment he wasn't covered in dirt. We had constant outbursts, tantrums, and boo boos to deal with. It was hard, no other way to put it. In fact, Kuper and I both agree we will not be camping solo until Karsen is walking. He definitely got his dose of sensory play while we were there, and I think the big crowd of family was sometimes too much for him, but Karter was having the time of his life and I think he was thoroughly enjoying the attention he was getting from all of our family. 

It was a little hard on me to let people see (yes, even family) what Karsen is like outside of short visits and this blog. Too see the real tantrums, the real frustration that stems from the lack of communication, frustration he and I both expirience. Raising a special needs child is no picnic, its not all the smiles and giggles, it can getbe down right dirty and ugly but it sure is rewarding when they hit milestones you've been working on for months, sometimes years. 

Last week was also Karsen's birthday. Two years old, when did this happen?! We had a small party for him at a friends house. It apparently wasn't small enough. I caught him several times trying to escape the crowd and go play solo. He just doesn't handle large groups of people well. It was a hard day for me. It took him throwing a fit and melting down for me to realize I wasn't throwing this party for him, I was throwing it for myself. I wanted things to be "normal" for him and in the process I made it miserable for him. Karsen has his own normal, it's taken me along time to come to terms with that, in fact I think I am still trying to come around. At what point did throwing a birthday party become such a necessity? When did we are start feeling like we need to be the Pinterest mom and throw these huge parties when really a toddler could care less if there is enough puff balls, streamers, or cupcakes frosted the perfect way. Lets be honest, they just want to play with toys, open presents, and eat copious amounts of sugar. So, I learned my lesson, I am taking cues from my boys. Doing what they really want to do for their birthday, it's only fair. I'm no longer forcing them to form to what they "should" want to what they really want. Embracing who my kids are. It was a big mommy fail on my part, but I'm willing to admit it and make it right from here on out.

Today Karsen signed music. His signing is really starting to take off. He also got a new thumb splint today, bright green to match his newest pair of AFO and SMO's. (the kid has gone through three pairs now).  We also have an appointment tomorrow at Shriners to see what our other options are for the drool. I'm going in guns loaded with all the pictures of how bad Karsen's rash can get, let's hope they listen. Say a little prayer for us, we really need a solution to this problem.

Here's a picture of his new thumb splint, along with a sweet shots of my sweet boys, they truly know how to melt my heart and make my bad days good.

What now

What do we do now? 

That's the question I asked his doctor today (his temporary fill in doctor since his regular is on leave).

Karsn has been on robinul for his drooling for a week now, we had a brief thirty minutes of no drool the first day and that was it. Drooling like normal, which means back to the horrendous rash. So, I called the doc. After a good 15 minutes on the phone with him, there is nothing more they an do. What do we do now? Well,I contact his doctor at Shriners to talk about Botox. Yep, that's right Botox. I know very little about it, but that's the next step. Time to research.

My poor little man. I wish he could catch a break, I was really hoping he could be bib less for his birthday. Sorry little man. I'm working on it. We'll figure this out.

*sigh* feeling frustrated and very heart broken. I want him to stop itching! I want him to stop bleeding! I just want the drool to be gone.

GO, GO, GO!

We had a good day yesterday filled with OT and speech therapy and the usual Monday run arounds. I love my Mondays. Karsen seems to respond really well to his sessions of OT with Tom when I'm not around. It's funny because I never thought I would leave him during a session until I realized I was doing more damage than good. Tom has been able to get Karsen to sit in a chair for a straight 45 minutes working on fine motor skills and involving his left hand. So Monday morning are my new favorite since I get one on one time with my oldest. Yesterday we practiced riding his bike. He loves that I get to give him 100% of my attention, and I love seeing him light up. After OT we headed home to meet up with Miss Colleen to have our third speech session. Let me just say what a huge difference a few weeks can make. Karsen has a clear yes and no and after yesterdays session he now signs Go! He did it three times at group therapy today. I wanted to jump up and down.

After I had spent countless hours of deciding what to do next with Karsen's drool we had decided to start him on a medication. It will help lessen the drooling. I never thought I would be excited about it, but after the worst rash last night I was ready. He was literally bleeding from his chin. Enough is enough. When we went to go get the prescription filled I was told they couldn't get the generic form (which means we'd have to pay out of pocket since our insurance wont cover it) and the name brand was on back order. Ugh! Seriously?! So, I decided to call around. Well, wouldn't you know another pharmacy carries the generic and can get it tomorrow, the name brand is available now. Interesting. Not really sure why I was told otherwise, but I am glad that I searched around. We will pick up the meds tomorrow and start them first thing. Yay!!!! (Insert happy dance here) Maybe I wont have to wash so many bibs!

I cringe just looking at this picture. Here is how truly bad his rash gets. Not sure if people really believe me when I say it's the worst drool rash I have EVER seen.

 

Hard at work at speech therapy.

I take that back

Earlier I was talking about Karsen walking and shooting for October, just in time for Halloween. Well, I take that back. After spending some time at a friends house combined with this morning, I changed my mind. I'm thinking it is going to be a lot sooner. 

Yesterday, he took four independent steps, lost his balance so I helped him gain it back, four steps again, then again, and again! What?! So this morning I put him at the end of the hallway and he decided to do this....

He's pretty amazing, I'm one proud mama over here.

Free standing

Karsen has, once again, blown me away. I think a small break from therapy was just what he needed. He started pulling himself up to stand just before we left for Vegas. He only had mastered this task with out his AFO and SMO on, these prevent him from moving his feet more freely. Once we were back from Vegas, he had it mastered with them on, he's pulling up on nearly everything. Now he has started to cruise along the furniture and even take a step between things that he has to get. I even had him free standing for a good minute, watching him start to loose his balance but gain it back. I'm beyond thrilled. Feeling like I can see the light, he'll be walking soon!!!he wants to walk everywhere now, he does it no problem, holding on to our hands but is still not balanced and lacks the confidence. He'll get there. I'm thinking by October he'll be fully walking,,just in time to go trick or treating.

 

We've been battling the glasses a little, as you can tell in both pictures, he isn't wearing them. He's all the sudden decided he doesn't want to wear them, they are starting to get pretty scratched up and I'm wondering if that's part of the problem, or he's just being a toddler which brings me a certain amount of joy I can't explain. We have an appointment next month with his eye doctor, so we'll descuss the problem then.

His birthday is next month and this mom has been slacking in the party planning department. I need to get on it! We'll be keeping it low key since Karsen doesn't handle large crowds well, after all it is about him. I can't believe he's going to be two! His communication has been so much better, which therefore has brought frustration levels a lot lower. He now signs more, which is double special since he uses BOTH hands, all done, yes, no, and I've seen eat a handful of times. Starting to feel like I can tackle this, ha. Things seem to be going pretty well in the Williamson house. So of course I felt bored, I interviewed for a job with early intervention company (they are in charge of all meetings and iconic and play ayes for special needs families), and I got the job! I'm more than excited. I feel like this is where I am suppose to be. And since a new job isn't enough, m looking for another full marathon to train for. I might do the same one I did last year, not sure yet, but I need something for me. 

Well, there ya have it, free standing, almost walking, eye glass issues, using sign language, a new job, and looking to train for another marathon, that about sums up our most recent. 

Tough talk

Today I had to do something I'm sure no likes to do, I had to fire Karsen's PT. Do you guys remember when I talked about Karsen's last PT visit that we had to cut short. Well, the decision is something that didn't come easy for me. How would you fire a PT when you feel like it's just not the right fit? Well, we talked today after Karsen's OT session this morning (which by the way went amazing). Tom, his OT, talked to me and said he had heard through the grapevine things weren't going well with Vickie. Well, in walks Vickie toward the end of our session, and before I have anytime to get sick to my stomach or nervous about it, Tom pushes me to talk to her right then and there. I'm very grateful he did that. It made it go very smooth and was over before you know it. So, after Kuper and I get back from Vegas (that's right, Kuper and I will be going to Vegas SOLO!) We will have our first session with our new PT, Pat. 

We had group today, but it was at a park which was a nice change of pace. It was combined with all the other groups that our early intervention program puts on. I got to catch up with a few other people I never get to see and see their kids run all over the park which was so exciting. Well, Karsen decided to fall asleep in the car on the way home and woke up right when we pulled into our driveway.... :-/ I tried to put him back down for a nap.... with no luck. I heard him playing, so in I went to pull him out. I opened the door to see those two beautiful blue eyes staring at me from above the crib rail. Did you hear that?! Above the crib rail! He pulled himself to standing! Of course he does it when I'm not looking, little stinker. I'm pretty amazed at what he has figured out to do "his" way. 

He's one tough cookie. Each day we both seem to be getting less frustrated and the communication is starting to click. Not only is he using more signs (even in the last day) but I'm picking up on them fast. Makes for a much easier day for all. 

I'll leave you with a sweet picture of my boys bikin and walkin. 

In three days

In three glorious days, Karsen will be seizure free for ONE YEAR, one year people! How amazing is that?! As always, I'm on watch, just waiting for them to return but it's been amazing being able to have one full year of him not being put on hold. 

I haven't been on here much because we've just been busy. We've been busy with sickness in our house which seemed to last for a good solid month and the whole time I was super stressed just waiting for Karsen to have a seizure since he had a high fever. Thankfully not a single one. We've also been taking a bit of a break from PT. You know, the one where we had to leave 35 mins early because it was so horrible. Yeah, that one. We wont be seeing her again until two, almost three, weeks from now. We've been enjoying summer. We went to Tahoe and broke in our trailer for the first time, the boys loved it, they also did really well. We also made a day trip to Tahoe to just hang out on the "beach" aka the lake shore. It's been surprisingly relaxing. 

The one thing that hasn't been so relaxing was the stress I was putting on myself of the pressure for Karsen to start talking. There was mention by someone (and I can't remember who) that maybe a communicative device was needed. That just broke my heart. So what did I do? Stress. A lot of good that does. And then Karsen just decided a few days ago he was going to say UP. That's right, he said up and even put both arms in the air while saying it. That was the light I needed. I also just got baby signing time to get his communication up a bit. I will try anything. Tonight was our first night watching it and he actually was trying to imitate the babies on the video! He's said up a handful of times now, even said it for my mom. :-) It was the glimpse of light that I needed to pull it together and get out of my funk.

His drooling is still REALLY bad. I was told by a fellow hemi, their OT suggested kinesio taping around the jaw to keep their mouth more closed so they have any easier time swallowing. I need to look into it more but it's worth a shot. After reading that it turned on a light bulb for me, Karsen is always mouth breathing. I wonder if he has a hard time breathing through his nose? Maybe there is some connection there. So, the next time we see his pediatrician I'm going to bring that up and see if we can get some progress there. 

We still aren't walking yet. He'll walk holding your hand and is still not 100% stable but we're making progress. He still isn't pulling himself up to standing but I have the feeling once that happens, that's when he's going to start walking and taking off. I'm really not in any rush for myself, it just breaks my heart that he can't play the same way other kids his age are and also wants to be able to.  He's a tough cookie and puts up with a lot. I just wish I could take on some of that struggle for him, who am I kidding, I wish I could take all of it for him. 

Other than that we've been dealing with regular toddler behavior and some not so regular behavior but it seems to be getting better now that he's starting to communicate better.

We are still taking it one day at a time here but it's starting to get much easier on everyone.

Happy Summer!

Cut it short

Today was hands down the hardest PT session we have ever had. In between the screaming, crying, and melt downs Karsen was hitting himself and hitting his PT. After 25 minutes of attempting to get something out of the session, I decided it was time to take him home. Enduring another 35 minutes of that wasn't going to happen. It wasn't good for Karsen or Karter and it definitely wasn't good for me. 

As I loaded up Karsen who was still back arching and hitting and proceeded to load up Karter, who of course is more trying than ever, I got in my seat and cried. It felt good to cry. it felt good to just let it out. I hate having to put Karsen through this every day, I hate having to out Karter through this every day. One of Karter's statements during pt was "Karsen always hits" yes, yes he does. I feel horrible my oldest child has to deal with that. I feel horrible my youngest child hits because he can't communicate any other way. The frustration from all parties is becoming more and more obvious as time passes. We've come a long way but we also have a very long way to go. I fear, after today, behavior might be an issue for Karsen we are going to battle for a while.  Praying hard today and continuing to cling to God.

Ready for summer

Wowza! It's been a while since my last post. I have not been the best blogger. To my defense, life has just been flat out busy. After Karsen and Karter swapping for a week straight of who was going to throw up for the night and getting back into the swing of things I've been a little behind. In fact, cloth diapers have been put on hold for over a week.... :-/ Sometimes you just a need a break. On that note, I am very much so looking forward to summer. We have decided to take a few week breaks here and there from therapy. I think it's important for Karsen to still enjoy being a toddler and also feel those breaks have helped him sky rocket when he starts back up again. 

Yesterday, I was talking to my husband about how I really just need to step back and look at how far he has come. I mean common, he's eating normal food!!!! That's a huge accomplishment. I'm not as worried and stressed about him chocking anymore and he handles drinking out of straws like a champ. I'm still avoiding the super hard stuff (carrots, apples, that sort of thing), I'm just not really ready to step back into hover and swipe the food out mom. Karsen has started to acknowledge he has a left arm now. If you ask him to blow a kiss with lefty he'll do it. I was shocked. He also will raise both hands up in the air if you prompt him too. We have seen more and more signing and more understanding in this kid in the last month than I thought we'd see. Here are his current signs: all done, more, yes, hi, eat and please. A month ago it was pretty much just yes. His understand is so clear. I was putting his rash cream on his chest and chin the other night and said "Look up." and he immediately did. He still throws the biggest fits but I'm starting to see that some of it is just being a toddler and me telling him no is not acceptable to him. ha

We are still not independently walking, but he's doing so good. He'll walk if I hold his hand, and he surprisingly loves his walker. It's absolutely a confidence thing now. The minute I let go of his hand, he sits down to butt scoot. Little stinker. He's one smart cookie.

Two more days of preschool for Karter and it will be official summer for us over here. I'm really excited to take the boys to the water parks once they open. Let the summer fun begin!

Please...

In the last two weeks a light bulb has been turned on for Karsen. He started signing please, and doggy, and staying strong with yes and all done. Yesterday, on a drive home I asked Karsen to say mama and he said ma!!!! It's a tiny but huge step in the right direction.

He's really starting to figure out his walker and is doing quite well in it. I'll post pictures when I have time to actually take pictures. We are getting close to walking but it's 100% confidence that he is lacking. He'll walk around holding my hand for a while but the minute I let go he sits down. He's also very close to pulling himself up to standing.

The biggest improvement we've seen in the last three days is his awareness of his left arm. He's starting to move it when given the command and is starting to play with his hand, I even noticed him use it as a helper!!!

Karsen has given just a glimpse of how amazing and awesome he is and how many things he is breaking through. I'm so proud of him!

Oh and I forgot to mention, back on goes the eye patch for an hour and a half a day. Glasses will probably be on until he's at least ten if not forever. Good thing he looks so stinkin cute with glasses on.

Set in a routine

Things are starting to become a lot easier in the Williamson house. I have no adapted to Karsen's PT, OT, ST, group thereapy and Home visits schedule, combined with Karter's preschool and Karate schedule. Things must be to easy for me now, I thought now was a good time to start training for another marathon. Yesterdays run made me regret my decision, it wasn't even past the 80's and I was HOT! Karsen has been such a trooper on my runs, I think he is usually too tired to complain. We shoot straight over to the trail after OT, and group therapy before we pick Karter up. I think it's a nice break for him and for me. I'm just going to have to adjust to this "heat". ;-) 

Today, we are picking up Karsen's walker. I'm excited to have something to give him that last bit of push so we can eventually be doing it with out the walker. I think we are getting it in perfect time. Karsen has still taken a few steps here and there when I push him to do it but he is no where stable enough to be walking full time, and to be honest I don't want him to be walking yet then. I know if he were to fall to his left or forward he wouldn't be able to catch his fall. I want him to really have it down before he starts truly walking. So, for now, I will be dealing with a few more months of butt scooting. 

We had our second speech therapy appointment on Monday. It went really well, especially since he woke up early that morning (thank you Karter....) and had a really good (in other words hard working) PT session right before. He only was able to make it 45 minutes in his ST session and was pretty much begging me to put him down for a nap. Right now we are working on him mimicking our actions so we can then get him to mimic our mouths to make different noises. I was a tough first 10 minutes, Colleen was trying to get him to tap a box before she would give him a ball to put it in. So each time he tapped the box he would get a ball. We'd show him, Karter was a HUGE help for this part since Karsen loves doing was brother is doing, and then wait for him to do the same. For the first 10 minutes he was mad, he just wanted all the balls (which he loves playing with balls, especially ones he can grab with one hand. these were ping pong balls, just his size.). But after repetition, and persistent on colleen's part and mine, he started getting! I honestly didn't think he was going to start mimicking anytime soon, I was thrilled.

Tomorrow, Karsen and I head down to Palo Alto for another appointment. This time it is with his ophthalmologist to check on his glasses and to see if they are doing their job. To be honest, I don't think they are. It doesn't help that Karsen is tilting his head down so he can look past the top of his glasses. I'm curious what she is going to say to this. One of my dear friends is taking Karter home after preschool so I wont have to take him with me (and have him miss a day of preschool). It will be a long lonely drive by myself for a day, and I never do good sitting still so we'll see how this goes.

Karsen has remained seizure free for 10 months. 10 MONTHS, PEOPLE!!!! I can't believe we are coming up on a year! He's still off all medication too. Doesn't mean that I don't watch him like a hawk, in fact at church yesterday  I was a paranoid mess and half way through the study I wanted to run back and make sure that all three people with him knew what to look for as far as seizures go. *sigh* Don't know if that will ever go away.

We've had to cut dairy out of his diet.... :-( Poor guy, can't have cup cakes at a birthday party.  We are hoping that we only have to switch his milk to almond milk and that will be enough. He LOVES mac n cheese. If we have to cut cheese out I might loose my mind. We've been told when switching to almond milk the transition can be really hard, thankfully Karsen will drink just about anything. Sucked the stuff down on the first try. We have still been juicing a lot, he has yet to refuse any of my sweet juices in the morning (this mornings: carrots, celery, kale, honey dew, apples, and oranges.).

That's about it for the update. Karsen has really been doing fabulous. The last two weeks, his motor skills have taken off! I'm so proud of my little man. Looking forward to updating you on more fabulous things later.

My Spaghetti eating boy.