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.