Bad blogger

I have completely neglected my blog. I normally find time in the day to squeeze in a quick post, but right now any time I have free is spent sleeping. I have got to have the records worst sinus infection. I have been feeling crummy for the pat two weeks and finally bit the bullet to go to rapid care to see a doctor. I don't have insurance, hence why I waited so long. Boy am I glad I went. My sinus infection is so bad I as getting full blown aches, nausea, and an intense amount of sinus pressure. I'm still not even close to feeling normal, but I just started my antibiotics. I'm so grateful for modern medicine.

Not only have I been under the weather, so has Karsen. He seemed like he was just starting to feel better one day and the next day he was really bad again. We are going on over three weeks of being sick. I'm tired of quarantining myself and my boys. I miss my friends. :-( Karsen has an appointment tomorrow so we can make sure he doesn't have a sinus infection. To be honest part of me is hoping it is. That way we can get him on some mess, start feeling better and get back to life. We have missed many pt, Ot and group therapy visits because of the non stop stickies in my house. I'm ready to get back to our norm of crazy.

I'll leave you with this picture of my sweet boy in the tub, his favorite time.

Clinging

Today, I cling tight to God. I didn't expect to feel as emotional about today as I have been. I woke up, feeling like I do ever Valentines day 'Great, another fabulous Valentines Day. I just love this holiday'. If you can't tell, that is major sarcasm. I hate Valentines day, I always have. I'm not really quite sure why I hate it. Growing up, my mom always gave my sister and I a little something every year. In fact, one year in particular I remember getting a cute coffee mug full of candy. How awesome is my mom?! But yet I still hate it. I always wondered if my hatred toward it came from always being single on that specific day (until I met my husband). But truthfully, I think it's because today you are "forced" to show your love for you loved one. I would much more appreciate flowers, chocolate (although right now that would sabotage my diet), a piece of jewelry on any other day of the year. It means so much more than 'Oh shoot! I have to get flowers for my wife because everyone else is, and if I don't she'll be so mad' Really?! Is that really what this holiday should be like? OK. Enough about my disliking of Valentines day. 

This year brings a whole new meaning to Valentines day for us. Today marks one year from Karsen's diagnosis of CP. As I was making breakfast this morning, I got a text that broke down my walls. If you haven't followed me from the beginning, here is where you can read my story about last years Valentines. like I said before, I didn't expect to feel so shaken by today. I expected the day to pass like any other. So, today I cling to God. Today, I am grateful for our journey, to where we have gotten. One year has changes our lives so much from hearing the words stroke, brain damage, cerebral palsy, seizures, infantile spasms. It has made me a stronger person, a stronger mom, a stronger wife, a stronger friend, and a stronger christian. God has blessed me and my family with an overwhelming amount of amazing people. People that have helped me through some really rough times, people that prayed for me when I myself didn't know I needed prayer. So, yes today makes me appreciate my life, appreciate my two beautiful boys and amazing husband. While at the same time, I mourn the inability for Karsen to walk with out a limp, to use his left hand with out effort, the endless appointments he'll always have, the stares from strangers and teasing from other kids. It breaks my heart the struggles I have seen him endure, and it hurts me to know there is much more. I also know he can handle it. He is one tough cookie. I hope and pray that I am a good enough mother. I hope and pray that I can teach him to show people his heart and look on the inside. I hope and pray he can find the joys of life others also find. I hope and pray I am enough.  I hope and pray Karter (Karsen's older brother) grows up with the knowledge of compassion, and humility, while being the example to his peers, heck even adults. I hope and pray to be good enough, to raise these children the way God intends me to. I hope and pray I can continue to follow God's plan and set mine aside, to constantly cling to Him.

I received a text this morning that broke down my walls. I thought I'd share with you. From one of God's beautiful daughters: **1 year. One year of you being the strongest woman I've ever known. 1 year of you inspiring me to be half the incredible mom you are. 12 year of my faith being strengthened by watching Karsen overcome obstacles we didn't know possible. Thank you. I hate today, but reflecting on it; I'm thanking God. 1 year Jaimie. You continues to amaze me and inspire me. Happy anti-valentines day. I love you!!!!** How blessed am I to have her in my life?!

So, as my dear friend and sister in God said " Happy Anti-Valentines day!"

Taken one year ago today.

New pediatrician

On Thursday, we got to our appointment early. I wanted to make sure I was there early to fill out all the paper work. 

It didn't start out so great. Sat in the waiting room filling out the "does your child do this" form, boy was that heart wrenching. Pretty much checked no to all of the questions, maybe two or three were yes. :-( Got seated in our room and proceeded to wait 10 minutes. OK, no big deal, you always wait in the doctors office. In comes the pediatrician apologizing for the wait. She was spending the last 30 minutes reading Karsen's chart and decided it would be better if she just came in and talked to us. Wow, I was already starting to like her. She has me a long list of questions of ALL of Karsen's history. When we got to the topic of medications and vaccines, I warned her that I was a little bit of a hippy. I mean common, my child is in cloth diapers for crying out loud, if that doesn't scream granola I don't know what does. She then responded "Oh, we'll get along great, I'm a total hippy". I was in love. ha I know funny. But you likely know what it's like to have a good relationship with your child's doctor and well.... I was in love. :-) We went over everything. I mean EVERYTHING. She called his neuro, while we were there, to go over his head measurements and a few other things. She checked out the nasty drool rash Karsen had and had a list of suggestions for after it clears up to keep it away (all natural ways of course). We also talked about how Karsen is sick ALL the time, at least once a month. There may be a connection to his constipation issues. Which he has always had. When people are always constipated it can back all the way up to their colon, which can make it near impossible to absorb nutrients. So, we are trying to tackle his constipation issue first, starting him on the biggest baddest probiotic out there.... (It was no joke expensive, thanks again for the fundraiser) and let's hope he clears up and stays healthy. We had a list of blood work to be done to test for a bunch of different possibilities for the constipation also. Lastly, we figured out a vaccine schedule that she and I were both happy with. She was amazing! She spent well over and hour and a half with us, I thought she was leaving another patient waiting, turns out she went into her lunch with us. AMAZING!

 

It was a very good appointment. Couldn't have asked for a better day.... well except for the part where it took three attempts to draw blood, which resulted in us leaving to come back today to make a fourth attempt. Poor little guy.

Wish it would go away

Karsen has had major problems with drooling. It's not your normal teething amount of drool, it's way more than that. It has been so bad he had a huge rash on his chin and his chest. After a trip to his new pediatrician, I think we now have it under control. I ordered a set of bandana style drool catchers that are suppose to hold up to 1/2 cup of liquid. I'm hoping it will get away from the bib look since he isn't a baby anymore. We'll see. I'm really getting tired of washing bibs on a daily basis. On top of laundry for a family of four, and cloth diapers throw in an average of 12 bibs a day. Cross your fingers and wish us luck.

That's two days worth of laundry bibs.

Not resisting

We've made huge strides in the last week. Not only has Karsen cruised but he has been using his left hand when prompted. Ok, let me back up to the first part. That's right, Karsen took four steps completely on his own while holding on to our ottoman. He's done it a handful of times, so I know it's only a matter of time before he is fully cruising. Now onto the second part, using his left hand. He's normally very resistant to using his affected arm and will usually pull away from you if you try to involve it in any activity. Well yesterday at group he was actually ok with using his hand while eating. Then today he used it independently! I put food his his hand and he ate it! These two things may seem so little to you but they are so big in hemi ville. We should be getting a sling to start doing some constrain therapy soon. If you had asked me two days ago if Karsen was ready for CIMT I would tell you no way, but after his huge improvements in the past two days I think we are getting very close. I'm so excited and so proud. He is quite proud of himself too.

Here's a quick shot of Karsen with his new glasses. I have to admit, I really didn't want him to have on glasses but they are pretty stinkin' cute. Sorry for the glare and the messy bib... living real life here. Surprised I actually got a picture of him not screaming since he wanted the camera.

Here's a short video of the lefty action. 

Bonded

We are steadily approaching the year anniversary of the hardest day of my life, hands down. Valentines day, bluck! If you need to catch up, this post will explain why I hate Valentines day even more this year than I did two years ago. But while reflecting on this rough year, I can't help but feel incredibly blessed to have so many supportive people in my life, people I wouldn't have met had I not gone through all we went through. Friendship is one thing out there that helped me through some of the toughest days. Some of my friend may not know the impact they have made. So today, I want to take a moment and recognize some amazing people. 

Let me start of with sister. My sister and I have a friendship unlike any other. We couldn't be more different and more alike. I can remember one time where I knew she just "got me", she knew exactly what I needed. It was over 8 months ago, Karsen was still having 8-10 seizures a day, and wasn't even coming close to sleeping through the night. We were in Tahoe, trying to enjoy the leisure of the lake but it was really cold and windy, Karsen was tired and refusing to fall asleep, starting to melt down. I started getting all my stuff packed up to get the boys loaded up in the car. I couldn't find my keys. Everyone was searching everywhere, my brother in law snagged Karsen and snuggled him to sleep while I began to throw my tantrum and scream and kick because I couldn't find my keys. I'm talking full blown three year old tantrum, kicking the sand, yeah, that was me. Right then, my sister held me tight and said the one thing I needed to hear, "I know you just need to cry". And that's what I did. bawled my eyes out, sobbed for a good 5 minutes and it felt so good. I don't think anyone else there really knew what was going on in my head except for her. We get each other, she knows how I work, we are bonded.

Then there's Brittany. We've known each other for almost 4 years now. I really don't consider her a friend, she's more like a sister. We are so much a like, it's scary. Our husbands are really similar in personality and in looks too. I can't tell you how many late night text conversations we've had to help either of us pull through a tough week. That's right, text conversations. I know what you're thinking, pick up the phone, just call her. Thing I love most about her? No matter how much time passes between us (although it doesn't ever seem we let much pass if we can help it) we pick up like no time has passed. Our friendship is effortless and yes we have resorted to texting instead of calling. Why? Because we both are insanely busy, time is rare, and I can tell you right now if we picked up the phone to talk to each other we would be one the phone way longer than we should be. She understands it's hard for me to find time to pick up the phone, she understands why sometimes I just need to have a pitty party, she understands how sometimes I just don't want to talk at all. I know, ten years down the road, we will still be friends, we will still be sisters. We are bonded, we always will be. 

Then there's my hemi moms, Marlisa in particular. Karsen and Olivia are only two weeks apart and both have hemi cp. They are hitting their milestones with in a few weeks of each other. She is someone I KNOW understands how hard it can be to be around typical babies, she understands that we probably wont be able to see each other for a few months because of therapy schedules. She always remind me Karsen proves me wrong every time I am down. I know she gets just as excited as I do when Karsen does something new. We are bonded.

Then there's Lisa, Bree, Coral, all my friends that pulled together and have helped me out with Karter time and time again. These three amazing women have kept me sane. Something that may have seemed to simple to them took a huge weight off for me. They have helped make my life feel a little more 'normal'. They've prayed for me in the toughest times, and let me block myself off for a few and pulled me back to reality when I needed it. They've never judged me, they've never made me feel like a bad friend. They have just been there for me. We are bonded.

Then there's Mary Beth. Where do I begin? Someone I never thought would be a part of my life and quickly become one of the most important to my life. She understands Karsen as well as I do, she has a connection to Karsen no one else has ever made. I love seeing the excitement she gets when Karsen starts to push forward. It's the same excitement I get, she understands the hard work he and I (and her) have put in. She's seen me at my worst, and has seen me close to my best (ha). Karsen's sessions always run over because she and I can never stop talking. She has helped me pick myself up, help Karsen in different ways and helped me learn how to roll with the punches. She is no longer just Karsen's OT, she is my friend, she is our family. We are bonded. 

All these friendships (and so many more) are invaluable, I could only skim the surface of how amazing you all are. I'm so grateful you all are a part of my life, a part of my kids lives, a part of my family. You will never understand how much your friendship has helped me. I love you all to bits. Don't go any where, because I wont let you. ;-) Stuck with me for life, friends, stuck with me for life. 

Happy Friday!