What do you do when you don't know what to do?

You follow your toddlers lead

As Connor's symptoms seem to get worse, I feel like I'm starting to lose my mind.  The idea of him in pain kills me.  It breaks my heart.  There have been days when I don't even want to get out of bed in the morning.  Days that I just want to crawl under a rock and hide from this.  But, we can't.   Connor doesn't.  Every single time something knocks this boy down, he gets right back up swinging.   How can I sit here and feel sorry for myself and cry when this little boy just keeps swimming?   Today may be a bad day, but not every day has to be.   It's not the things that life throws at you that define you, it's how you swing at them.   I'll follow Connor's lead.  

For those in NC- Easter NC Chiari Walk

Parttttty!

Yesterday was Connor's baby sister Everley's first birthday.   I was very nervous about having a party.  Every time we have a large gathering at the house, Connor doesn't do well.  between the noise and commotion he ends up getting headaches.   If he gets upset because of all the goings on he gets even worse breath holding spells than he does normally.  The whole time setting up for the party Friday night I was worried it wouldn't end well, I was considering cancelling.... But you just can't do that.   I will not let Chiari consume his life.  We will work around it.  We will adapt.  

Once everyone started coming over, I was very uneasy...Connor was fine.   All the kids came and played... I was so worried Connor would freak out about sharing.....he was fine.  His drink got spilled during lunch... I was waiting for it, but Connor was fine.   Presents...  Oh no, his sister was getting a present but he wasn't.  Connor was fine.   Cake time.... Oh geez, he's going to hate when we sing Happy Birthday, he joined in.... 

Note to self:  don't assume the worst will happen, and don't doubt Connor.  Ever.

Eating lunch with Grandma

 

 

Helping his sister open gifts

 

And of course, my little meatball trying to sneak some icing off the cake.

 

 

He and his brother and sister, are the icing on the cake.



For every few bad days...there's a good one.

Today Connor had a really good day.  He woke up happy and went to bed happy.   He ate, he played, he laughed.  It was so great.  That boy has such a contagious laugh.   When Connor laughs, everyone does.  

Today, Connor was Spiderman.  He insisted I wore a mask as well.   He wanted me to wear Optimus Prime, so I cooked breakfast, cleaned and walked to the mailbox all wearing an Optimus mask.  Connor thought that was pretty fantastic. 

1,000,000 likes?

I'm sure a lot of you have seen "1,000,000 likes and I get a :insert something here."   I was thinking last night, what if Connor got 1,000,000 likes.   All we want is in return is that someone sees or hears the word Chiari.   That's it.  So, as usual, here we gol.

Normal...

Last night was one of those nights where Connor just can't get comfortable. You can see he is hurting and the only way he can express that is to beat the crap out of me. He can't verbalize what is going on, he just knows he doesn't like it. I take him downstairs on nights like this so no one else gets woken up. It's frustrating...all I want to do is make him feel better. If I can just take on his pain myself. But I can't. All I can do is rock him and tell him it's him and me and it'll be okay. I was thinking about it a lot during this. This kid has no clue what it's like to be normal. All he has known from day one is pain. Headaches, neck pain and horrible pressure in his head. Maybe not all day everyday, but more often than he should. This SUCKS. I am getting more and more anxious for his MRI on February 18th. I want more answers. From there, we find a way to fix it. Until then, all you can do is take the nights like the last one at a time.

You and me kid...

Advice: The good, the bad and the just plain ugly

We all have been subjected to unsolicitaed advice at one time or another in our life.   People never hesitate to tell you what THEY feel is best for you and how you are doing things wrong.   Especially moms.  Good lord.  From the moment people can tell you are pregnant you get comments on your weight, get told how you better kiss sleep goodbye, someone will bring up that you may poop during delivery (Shout out to the person who said that to me my first pregnancy, that was my BIGGEST fear during my pregnancy  and I didn't poop, so suck on that lady!)...  so many things.   One you have your child, you are feeding them wrong, swaddling them wrong, you should do this you should do that.   Then it comes when you face something difficult like we are with Connor.   I've gotten some horrible comments and advice.  It is my fault he has Chiari because I vaccinated him, I am going to kill him because I wanted to wait to do the surgery until we had another MRI, I shouldn't have brought another child into the world because Connor has Chiari (which by the way we had no clue at the time I got pregnant or even after Everley was born that he had it)...   but with the bad there comes the good.  There are always silver linings, right?  Right???  Yes.... 

Here's some of the good:  

The peppermint and hand massages like I mentioned in the other post,  Coke flavored slushees... I was told they are good for headaches.  Connor woke up with an awful one a few weeks ago and I was desperate.   He wouldn't even let me massage his hands.  What did I do?  Drove over to the gas station and carried both a screaming Connor and Everley into the store.   Fumbled with the slushie machine and got a huge Coke flavored one...  struggled to get out my wallet and pay...and then I handed it right over to Connor.   It was really early in the morning so you can imagine the stank eye I got from the lady behind the counter and the rest of the consumers, but holy shit, it worked!  Plus, he loves slushees and he thought that was pretty awesome. 

My point?  Sometimes you have to listen to the bad to get to the good.   Even if something sounds a little bit strange, don't be afraid to try it. (with in reason, you don't want to hurt yourself or your child)  

I will keep accepting advice and tips.  I may not like everything I have to hear all of the time, but it's worth it for the good stuff.  The diamonds in the ruff. 

Extra sets of eyes

Never be afraid to go out of your comfort zone.  I'm not very forthcoming with personal things and rarely have anything serious or of substance to say, but when it came to this I just couldn't shut up.   Like I said in another post, I was just desperate to find anyone going through the same thing.  In the process, I grew extra sets of eyes.  Last night a friend sent me an article about Dr. Anderson at Columbia. 

“For the rest of my life I will never forget the words that Dr. Anderson first said when I sat in his office reviewing my daughter’s medical records, ‘This is a solvable problem.’” Tracee’s seven year old daughter Paige had been diagnosed with a Chiari Malformation 1 (CM1) and Syringomyelia.

This is a solvable problem

Solvable?  It can go away?  They can be cured in a less invasive manner?  Well eff yes!  Let's explor it.  I have nothing but time on my hands and I plan on find more out about it.   Does anyone out there have any expereince with Dr. Anderson? 

Here is another article about it:  http://www.columbianeurosurgery.org/specialties/pediatric-neurosurgery/


It's a wonderful feeling to know you aren't alone and there are people out there who also want to learn about this and want to help.   Don't be afraid to ask for help.  Ever.

This was made by a great woman named Karen.   I love it.  

First is the worst...

You know you love to be the first, first to introduce people to a new band, first to eat at that fantastic new restaurant, first to bring back pleather leggings... (Actually, you don't want to be first on the pleather leggings.  I thought I did until I wore them in class and every time I moved everyone thought I was farting), but you get my point.  Being a "trendsetter" is awesome.

NOT.

Connor is the first person I ever met with Chiari, so how could I go about getting advice and tips about what he was going through?  Who would hold my hand and tell me everything was okay because they know first hand?  Well, you go to the internet of course.   Through this medium I have "met" many, many people who have Chiari themself or have a loved one with it. And let me tell you, they are amazing.  So open to share and offer help and support. The more you search on the subject, the more people you find welcoming you with open arms.  Maybe this isn't so uncommon?  Ah, but it still is.   And this is where it's going to change.  Through my reaching out on the internet I was connected with The Conquer Chiari Foundation.  I want to set up an awareness walk.  I got my handbook today and I'll tell you, I am excited.   Terrifed, but excited.  I am very lucky to have a pretty good support system of people who adore Connor and are willing to help.  

Here I go! 

The waiting game

Connor is scheduled for his MRI on Februrary 18th.   This will tell us so much more.   Has his herniation grown?  How does everything look in his spine?  Does he need surgery right now, or can we wait and see how things progress?   So many questions on hold until this is done, but it's the next step.  So what do you do?  You wait.  Keep researching...keep reaching out to others... what else can you do?  If after this MRI his doctor feels Connor needs the surgery we will go ahead with it, guns blazing, balls to the wall, whatever analogy you want to use.   But this time I will not have doubt.  I will have something to compare his first MRI to.

Peppermint, my best frenemy.

I've been looking for things that help Connor with his migraines.  He gets them often.  They come on fast and their is just no consoling him.  They SUCK.  All I want to do is switch places with him.  But since I can't, I do what I can... figure out a way to help.  The best thing I have found so far is the scent of peppermint (lavendar helps too, but peppermint is the shit for Connor).   I read that peppermint was a good natural cure for migraines.   I went to Bath & Bodyworks and told the girl that worked there that I needed something peppermint asap.   She was puzzled, so I explained.  That woman spent 40 minutes pulling out everything with even a hint of peppermint.   We decided on the CO Bigelow Mentha lotion.  It is STRONG.   Sure enough Connor had a headache later that day.  A wicked one.   All he could do was scream and hit himself in the head.   I turned off the lights and got that strong, stanky lotion out and began to massage his hands.   I concentrated on the space between his thumb and pointer finger mostly.  A few minutes later, he wasn't crying anymore...soon after that he was ready for something to drink and then to be back to playing.  Not perfect, but better than the alternative.  The smell is kind of overpowering, it makes your eyes water and if you forget to wash your hands immediately and accidentally put them near your eyes or mouth you will regret it... but it works.   

Accupressure points for headaches

If you can't be like everyone else, be Batman.

So, I'm having a bit of a hard time swallowing the fact that Connor won't be able to play.   Connor was going to be my NY Giant.   He's big, fast, strong and has a wicked temper.  Perfect for football.  Except for the fact that a head injury can be fatal.  So what does this ellliimate?  Most sports.   Connor's neurologist told us that baseball, soccer, hockey, football and gymnastics are all out.   Well, what can he do?   He WANTS to be like his brother, but since he can't we need to find something else.  That something else will be golf.   This makes his grandpa quite happy.  As a matter of fact my dad, who Connor and the rest of the grandkids call Pop, called me to tell me he got his Golf Magazine in the mail and there was a feature about a Pro Golfer named JB Holmes who has Chiari and had the decompression surgery.  Well slap my ass and call me Sally..  Here is a man who suffers from the same thing, went through the surgery, had a bad go of it and is still out there trying.   What a good example. 

Connor is only two, we may find that he doesn't like golf, or any sports for that matter as he gets older.  But the point is, he has an option.  He may not be like every other kid.  He may never be like everyone else, but he doesn't have to be.   That's what I adore about this kid.  He doesn't have to be anyone but Connor.   This kid makes his own path.  

To sum it up...

I appologize in advance, I am crappy with technology..this is my first blog ever so it will probably be sloppy.  I also may curse often,ramble and have a sick sense of humor.  Hell, if we don't start laughing at ourselves every once in awhile, we will never stop crying....right?  A little about me... I am quiet.   Mostly keep to myself and run away from confrontation like a scared little biotch.  I just don't like it.  It's not for me.  I have always been a doormat, that's just who I am.  I let people treat me however they want.  But when it comes to these kids, this little woman is 30 feet tall and has the strength of a beefcake on steroids.   I.don't.play.   

Let me start by saying, I have always known Connor was different.  From when  he was a few weeks old I felt something was off.   I just wasn't sure what.  As time went on, I saw it more and more.  He was just such an unhappy baby.  He cried so much.  I didn't know how to comfort him.  It seemed to get a little better with time and I let everyone convince me that it was just colic, or gas or whatever.  Then it came to sitting up, he wouldn't...crawling..nothing... standing? No way.  Walking was a hell no.   He was behind on every.single.milestone.  What the hell?  His brother, Luke, reached these milestones so much faster.  But everyone assured me that Connor was fine.   Eventually, he did reach his milestones.  But I still felt something was off.  I talked to his doctors about it, my husband, my family.  Everyone told me to let it go, he is fine and I am being ridiculous. Then at about 15 months he started throwing tantrums.  He would get so upset that he would hold his breath.  Again, everyone said he was normal.  What do I know? I was just a mom of 2 boys with a little girl on the way.  I am no doctor.  We just learned to deal with the tantrums.  In January, Luke and Connor welcomed their little sister Everley into the world. Things were hectic with Luke in preschool and Tball, Connor's tantrums and Everley being an brand new baby.  I was back in school and running a business and my husband just worked crazy hours.  But we managed as a family. Until May.... the worst day my husband, Chris, and my life... 

  I wrote this paper to sum up the worst day of my life for a class, I'll just share:

The Last Day of My Youth
The last day of my youth was the day I thought I lost my son. I will never forget May 3, 2012. It was a pretty hot day and the evening was only slightly cooler. My older son, Luke, was next door playing with his friend and my two-year old son, Connor was playing outside with my husband so I could clean up from dinner. My husband was bringing Connor back into the house and as usual, Connor was throwing a fit. His little round face was flushed from running around and he was clearly tired but he kept fighting to stay outside. My husband carried him into the house and set him down; Connor threw his usual tantrum. I walked over to him and said “Come on Connor, let’s go get your pj’s on.” He just lay there on the ground. That is not unusual for him, so I said again “Come on buddy, let’s go get cleaned up.” He didn’t move. I noticed he was convulsing. His little body was stiff and shaking. He started to turn blue. I screamed for Chris to call 911. I held my blue, rigid baby in my arms. I thought I had lost him. Chris ran outside while calling 911 and got my neighbors to help. I had started CPR but I was in no condition to do it. My neighbor pulled me off and started to administer CPR herself, monents later another took over. All I could do was scream. The ten minutes it took the ambulance to get there felt like two hours. I remember my neighbor, Cassie, holding me back while her husband continued CPR on my lifeless baby. Time felt like it had stopped. As soon as the paramedics came they grabbed him and ran right to the ambulance as I followed quickly, but nervously.
The ambulance was cold and bright on the inside. I was alone and terrified, Chris had stayed back with Luke and Everley so they could get situated at our neighbor’s house. Connor lay on the stretcher lifelessly. They were checking is vitals and hooking him up to machines. It was so comforting to see his heartbeat up on the screen, but he was still not awake. They said they were going to start an IV. I thought to myself, “No way will this child let them do that.” But he still lay there motionless, my heart sank. They couldn’t get a line on the first or second try. On the third, Connor came up swinging. All I could do was thank god. For that one moment I saw his fiery temper came back and I had some hope. But then he just went back to lying very still. The rest of the ride to the hospital was quiet and felt like it was taking forever. When we finally arrived to the Emergency Room, things moved more quickly. They were finally able to get an IV started and did all of his blood work and his CT scan. Chris was waiting for us when we came out with Connor’s favorite stuffed giraffe. All of Connor’s tests came back normal and we were told it was a fluke and would probably never happen again. When we got home that night I didn’t sleep, I watched him to make sure he was breathing. Not even 24 hours after the first seizure, he had another.
Every day I live in fear that he will have another. I watch him like he is ready to combust at any given moment. We still do not have any answers for what caused his two seizures but are still fighting to get them. We go back and forth to Greenville for different doctors’ appointments and tests. Though I would like to have an answer, I also think maybe it would be better to not have one. If they don’t find anything, maybe there is nothing wrong and it will never happen again. The only thing we can do now is wait.

I didn't mention in that particular post, but I had to FIGHT with Connor's doctor to get him to see a neurologist. They just didn't think it was necessary.  I did.  I am so glad I did.  I put in complaints on everyone I came in contact with, and their mother, and eventually I was able to make some progress and Connor was seen by a wonderful pediatric neurologst in Greenville who sent him for an MRI.   In September, we finally got a diagnosis.  Chiari I.  What in the fuck is that? I said when I got off the phone with Connor's doctor and I just started to cry.  I never heard of this.  What is this monster that sounded like someone made it up?  I wasn't even pronouncing it right for the first two weeks.   I didn't know what to think.  Will this thing kill my son? What can I do? How can I fight it?  That day I started researching Chiari and have not stopped. Connor is being seen at Duke now, which is the best place for him.  Even though his first doctor was not the best fit, this is a post explaining why:

Dec 19

Some people aren’t really into gut feelings. I am. Just as I knew from when Connor was just a few weeks old that he was different, despite people telling me I was nuts, I know what I am about to say right now is the right thing. When the doctor gave us the surgery date, I got a sick feeling in my gut that if we did it then, he would not come out of it. Connor was only diagnosed in September.... He has had only ONE MRI showing a 9mm herniation. With no comparison MRI, how do we know that Connor isn’t one of the lucky ones who have a herniation that shrinks or does not grow at all? Why was Connor not given pain medication to control his headaches like the other kids instead of just doing surgery? Why would we rush to remove a piece of his skull and his C1 vertebrae without at the very least one more MRI? Between that and seeing some of the other kids Connor’s age who recently had the surgery struggling to recover, one even losing her life due to complications, I feel even more that I am right. My child will not be anyone’s guinea pig, not now, now ever. I’m not saying no to the surgery forever. I’m just saying no right now. There are times that I do not sleep for days because Connor is restless and beats the bejesus out of me all night…or the days that he has a headache so bad that all he can do is cry and hit and punch me because he has no way to explain to me that he is hurting… This isn’t an easy choice. There probably is no right answer. I know a lot of people in my life do not agree with my choice, but I really do not care what they think. This is MY son. I am the one who has been there from day one. I brought that boy into this world and I will not stand by and let someone push me into a surgery that he may not recover from. I know I am not smarter than a doctor, that is for damn sure, but I am an expert on these kids. In my 6 years of being mom I haven’t been wrong on anything major. Nothing that my gut told me to do has been the wrong choice. The day of Connor’s first seizure was the last day of my youth. When you hold your lifeless child in your arms and think he is dead, you are changed forever. I was lucky. I didn’t lose him that day. But I wake up every day fearing it. I can’t go through with this surgery at this point in time. I had to fight to get him seen by these doctors in the first place and I will continue to fight for more testing until I know for sure what the right thing to do is. He is only 2 years old…. It’s my job to fight for him, he can’t fight for himself.

 

Luckily, we met with another doctor on Jan 14th who is willing to do another MRI and we will go from there.  The waiting game is bittersweet. 

  I am no where near knowing what I need to know.  All I know is, I can't just sit here and do nothing.  It is not enough for me to learn about it, I want everyone to know what it is.  I never want another mother to know there is something wrong with her child and be made to feel like she is insane.  I won't stop.   Connor is my son for a reason, all three of my children are.  Each of them has a different and special personality.  We just fit. 

This is all I can really muster up right now.

This is my Connor.  He may have a bad temper and be a bit of a crab sometimes, but when you hear that boy laugh, god you can't help but crack up.  He may be a bit hard to handle, but the love I feel for him is just indescribable.  This boy and his brother and sister are my life.  I will do anything I can for them.  You may wonder, what the hell is her point?  My point is to raise awareness.   This does exist.  There is no known cause and there is no cure.  We don't know how to prevent it, we don't know how to stop it.  But god damn it you will know about it.  I don't care if it is the last thing I do.  And I am not alone.  Connor is not the only one with Chiari.  There are many childrens and adults who have it.   Some are the only one in their family with a known case, like Connor, others have multiple family members that have it.  The point is, this is out there.   And it will not be ignored any longer. 

Connor, who we lovingly refer to as meatball.  He aspires to be Batman.

 

Luke, Connor and Everley tearing the house up:

 

 

 

 

You and me kid....

My Montage 4/6/11 at OneTrueMedia.com

Connor Patrick

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