Our Many Miracles

There are a few parts of this new Chiari journey, otherwise known as just our everyday life now, that I will simply never forget.
       
         I will never forget watching Camden be put under for the first time.

         I will never forget the neurologist showing us the imaging and him talking like it was completely routine and saying everything looks good and normal "but". I will never ever forget that "but". Or his hands pointing at the "malformation" within my son's brain that was up on his screen.
Instinctively I reached for Garth's hand, but I'll never ever forget the way that moment felt, not even if I tried.

        I will never forget his surgery days I'm positive--though those have not yet happened.

However, I've realized there are other things I simply don't WANT to forget. So I decided I want to write out our little miracles.


       First and foremost, somehow my one year old (at the time) learned how to tell me when something hurt. Not only could he express he was in pain but he could show me exactly where the pain was. I don't have any idea how my child who can't understand the urge to go to the potty can understand how to tell me mom it hurts. I literally cannot find any connection as to how he learned what "Pain" is, but to me it is a miracle. A miracle that he would come and just tell me simply "it hurts" and point to his neck. At first I thought not much of it, because he was one. But it just bugged me and he kept telling me, and now I am so grateful for this miracle.

    Second, our location. Most of you know when we moved to Colorado it was kind of a blind hopeful move. We had to move and be out of our student housing, but Garth didn't know what Grad schools he was accepted to yet. So we took a gamble and moved to the school we were hoping to be in. Garth decided to apply to the program here randomly one day early on in our marriage. I hadn't expected to ever come back. But there have been several experiences that have shown us we are meant to be here. One of which is the fact that we are equal distance from two really great children's hospitals. One of which has one of the best neurological departments in the U.S.
We have been able to meet with two pediatric neurosurgeons that both have immense experience with Chiari without having to go far at all. The fact we even have CHOICES of surgeons here is so unique.
I have met SO many who have to drive a couple hours, or even FLY to a whole other state for their opinions and surgeries. Having a specialist in chiari is so vital, and here we are sitting 30 minutes from two!

    They found Camden's chiari fast, and before he was even two year's old. I cannot tell you how many people I have met on this journey who it took 3-5 years to finally find their chiari. And even then the child is much older and much further progressed than Camden's issues are at that point. Most parents don't even know to start looking until their child is 5 years old and can better express their pain or challenges.
We have been so prompted and guided in which doctors and routes to take for Camden we found his actually really easily. Chiari's symptoms look like so many other things many people pursue the wrong routes for years. We found Camden's young, and the younger he gets help I KNOW the better off he will be. To me and my family this is a miracle. Camden was able to express just the right symptom for his age, and I already knew neurologists here I could take him to. It clicked into place almost too easily. Miracle.


      Miracle number 3 is my pregnancy. It has provided just the right amount of hope and positivity and things to look forward to, without taking me away from the things Camden needs me for. I know it's helped get me through this and remind me that this is just a moment. I also know if I hadn't gotten pregnant before this happened I would've been terrified to even try, and too stressed to add to our current situation: and I KNOW that a spirit was read to be here. So I'm grateful for the timing.


      Miracle number 4: Eternal life. I know that someday, no matter what happens within this life, Camden will be healed. I also know that he will always be mine, and a part of my family. This knowledge gets me through the hardest of days.

      There have been two other highly spiritual experiences and miracles, but they are too tender to share on a blog. So to end this post miracle number 5 is Camden. Somedays I feel like this whole ordeal knocks me off my feet over and over, like I have to reprocess every single day. But then I look at Camden. The one who is actually dealing with the chronic pain and he is SO happy. I've come to realize most children just look up at you when you walk in the room, if that. Most children are content just playing and going about their day. Camden, when someone enters the room looks up and beams. He begins to explain to you all that he is doing, while giggling and smiling. Across the dinner table he gives me random smiles throughout the whole meal. He wakes up each morning with a massive smile on his face. The kid is just giddy about life, and that is what picks me up on the days I feel like I get knocked down. I've learned my real-life hero is just over 2 feet tall, wears a diaper, and sleeps in a bed with guardrails. He keeps me going and reminds me to enjoy this journey, wherever it may lead us.

Chiari Update

SO much has happened, where to even begin?

After our last appointment with our first Neurosurgeon we were told that we would monitor Camden, keep track of his symptoms, and meet again in 3 months.
We were shooting for making it to the age of 3 years old before Camden would have his surgery.
Initially this felt like a good and reasonable plan.

As we began to keep track of symptoms I began to feel worse about the idea of waiting a year for surgery. After keeping track for a couple weeks we established that the longest Camden was going between days of bad symptoms was 3 days. We also began to see new symptoms popping up.

Chiari is a progressive problem, and there are a lot of things that it can cause that are permanent. Without getting into too many of the complicated details I will give two examples. The longer there is pressure on the tissue of the brain the more damage can occur. Brain damage is not reversible, once it's there--it's there. Surgery won't take it away. Some with chiaris see regression in developmental areas. Chiaris also block the flow of CSF and it can cause a syrinx or a cyst in the spine. Once you have a syrinx, you have a syrinx. Surgery does not guarantee it will go away, and a syrinx carries the risk of permanent spinal damage and paralyzation.

It's hard to navigate because brain surgery is brain surgery and carries significant risk. Not all people with a chiari malformation end up developing symptoms, and some never progress. So it is impossible to know what route Camden's would take. However, I began to feel like there was/is more occurring than Garth and I can see from our perspective. I feel that things are progressing for Camden, and that a year would just not be an appropriate waiting period for Camden's situation.

I began reaching out to those I know who have children with Chiaris and talking about ages of surgeries, recovery, etc. I started to feel in my mind like it was going to come for Camden probably in October.

So we met with our second option of a Neurosurgeon for the second opinion on Thursday. We hadn't really expected to like him, as we did really like our first surgeon. Both come highly recommended and both have performed surgery for chiari's hundreds of times. Both are also pediatric neurosurgeons, which is what we wanted.

We actually really, really liked him. We were warned that some feel he is a little blunt or even a little arrogant, but he just had a dry sense of humor that really reminded me of my dad lol.
He explained to us that the images of chiari's alone do not define the need for surgery or not.

Some people have TERRIBLE herniations and no symptoms, others have symptoms and mild herniations. Statistically speaking, usually those who have symptoms have a restricted or blocked flow of CSF which warrants a need for surgery.
He explained that it is all about the story you tell. So he asked Camden's story.

Camden's story and issues basically begin at three months of age and he listened and wrote down all we said. He agreed that surgery for Camden is reasonable and would likely help.
He did not feel that there was a need to wait until he's three.
When you are three the veins in your dura (brain sack) become more organized and it's easier to avoid a brain bleed when cutting the dura. However, if you do cut a vein it is fixable--simply becomes a longer surgery. So the surgeon explained its not a reason to put off relief for Camden, and it's also not a common thing to happen.

However, this surgeon would like to do a different surgery than the first. Though he's willing to do either one-- it is our choice.

The standard "full blown" surgery for chiari goes like this:

Removal of piece of skull.
removal of portion of spine.
cut into and opening of the dura
add a patch to the dura (usually a skin graft from tissue higher up on the skull)
and sometimes cauterizing or removing the tonsils of the brain.

This was the surgery the first surgeon recommended. It has the highest success rate for removing the symptoms and lowest risk of repeat surgery-- however, it has the highest risk and the highest rate of complications post-op.

The lesser surgery is the one the surgeon suggested he would prefer to do. He also clarified he will never cauterize or remove any part of the brain, which I really liked.

This "lesser" (if you can call brain surgery lesser) surgery involves:
removal of piece of skull
removal of a portion of the spine
and then instead of fully opening the dura he adds slits to the outer most layer of the dura so the dura itself can expand.

He has performed this surgery many times, and only once has he had a repeat surgery after, but for a different reason.
The issue is it is less "thorough" we may not see a full reduction of Camden's symptoms. However, usually the risk that comes with opening the dura is warranted when there is obvious neurological damage occurring. Camden doesn't show any developmental delays or issues with balance or anything like that so he feels he would do best with a minimal risk surgery to alleviate his debilitating pain.
The issue here is Camden is two, we are fully aware we cannot even know the full scope of his symptoms, because he lacks the ability to communicate all he is feeling.

However, one of the possible side effects of opening the dura is chronic head-aches and vomiting-- a symptom we are trying to take away.

So that gave us a lot to think about. The Dr. has agreed to do whatever surgery we feel most comfortable with. He assured us that he would not recommend the surgery if he didn't think it would help Camden because, again, it is a major major surgery.

Luckily for us our pediatrician is awesome. His son is a neurosurgeon in new york and works with a chiari specialist. He has offered to send all of the opinions and images to the specialist for us so he can help us decide which surgery he recommends for Camden personally, as well as from the perspective of someone who knows a lot about chiari.
We are so so grateful for that.


So as of now, surgery is on the books officially. October 12th is the date, just need to pick the type of surgery in the meantime.

We are terrified, and hopeful, and grateful all at the same time.
Right now life feels a little hectic and it seems to always feel wonderful and terrible all at once all the time. We hope we can continue to feel guided and comforted as we struggle to make the right choices for our little man, and we are grateful for all the support and prayers that have been going out to us and to him!!

To be real

I've decided to write more in-depth about the process our family has been going through lately. It's possibly because I'm just dying for someone to let me spill my guts to them, or possibly because I'm tired of people telling me that I'm strong, or possibly just to organize all my constant thoughts. Either way here goes:

     Camden was diagnosed with Chiari Malformation type 1 not too long ago. The first two weeks were spent just processing. Trying to figure out how I felt, what was going on, and trying to process all my emotions. There was a lot of crying and a lot of keeping to myself. Mostly I think there was just a lot of surprise. I hadn't been worried about Camden's MRI. Camden had so much going on the MRI was kind of a random test in the midst of several other random tests. When the doctor began to explain the abnormality within Camden's brain I was still shocked.

Anyways, I feel like for the most part I am past all the very surface level emotions now. I have been able to find my stable ground which includes the elements of gratitude needed to navigate everyday life. I've come to terms with the fact that there are much worse things happening to people everyday and I'm not being picked on. I have established that I will take this a day at a time and I will eventually be guided. I have accepted that there is a definite plan, and I'm working on being okay with the fact that I'm just not currently in the know for what that particular plan is.

My knowledge of Chiari has grown immensely since the last time I wrote. Once I processed and stored the emotions I could delve into the facts and figures. That part has been really hard and yet really good. Researching feels simultaneously like self torture as well as taking control again. I've been added to two Chiari groups on facebook, one specifically for pediatric chiari. Initially it completely depressed me to be added and begin reading people's stories. It hit me hard that this a very real issue, and very much a life-long thing. Even with surgery there are life-long repercussions, and monitoring. Without surgery there is possible life long issues and definite life long monitoring. It still isn't easy to read adults describe the symptoms and feelings my 1 year old can't yet put into words. I didn't expect to see that there are Chiari walks and races for awareness, chiari groups all over, chiari centers, etc etc. For about two days I struggled with the idea that this wasn't something I would be able to fix and walk away from. But then I began my research.

I have spent countless days reading medical journals, published research and studies, and different personal accounts and stories. I have read entire blogs and studied more medical statistics than is probably normal for a stay at home mom. I go out and I do normal things, but it is always there in my head--literally always. I know I'm a bit quieter, and truthfully I am not depressed-- I am quite hopeful, but I have so much to constantly think about it just never goes away.

Let me give you a slight sample of the medical rabbit hole I have ventured into:

I have learned that there is a huge division amongst neuro-surgeons on chiari and recommended treatment. A recent survey of 250 neuro surgeons found a huge division in their choices they would make for 3 different mock scenarios.
They disagree on what warrants the need for surgery.
More and more research points to the fact that the size of the herniation (how far the tonsils of the brain come down into the spinal cord) does NOT adequately determine the need for surgery. Symptoms must be taken into consideration. More studies have been done and cine MRI's have become a regular tool in Chiari patient's care. These are special MRI's that are a series of images meant to actually measure the flow of the CSF. (Cerebral spinal fluid). Most patients who have blocked or limited flow are symptomatic. Lack of flow is a serious issue with serious repercussions, many of them doing permanent damage. Camden is symptomatic. We do not yet know if his flow is ever blocked or restricted beyond the one image we have.

At Camden's age he has to be put under for every MRI he has. He is about to have his second one. Garth and I have been pushing for the NS to do both the spinal MRI and Cine MRI at the same time. She doesn't feel there's enough reason to do a cine MRI yet, but we don't want him to be put under for a third time when they could get all the info in one sweep.
Plus we have a second opinion scheduled and from what we've learned most NS want the cine mri with everything else to get the full picture. It is nice to be able to feel educated enough to be an advocate for my son, but frustrating to experience resistance and hard to know when to keep pushing.

Camden's spinal MRI will look for a tethered cord and/or a syrinx (a cyst in the spinal cord). Either one would likely mean surgery. The risks of a syrinx are high, the possibility of becoming paralyzed is just one of them. A syrinx can be developed at any time with out without symptoms in Chiari patients. It is the constant risk of not doing surgery. The longer there is pressure on cerebral tissue the more permanent damage can be done to it. The more permanent symptoms that are irreversible can pop up.

It is hard to not lean into surgery so badly because the fear of the unknown/uncontrolled.

Surgery is not without risk. There are SO many types of surgeries.
Removal of part of the skull and spine are the general standard procedure, opening the dura (sack around brain) is the tricky part.

Opening the dura involves the largest increased risk, however, it involves the highest rate of success and lowest rate or repeat surgery.

Removing the bone causes a ton of pain, a large incision, and the possibility of the brain slumping in the skull because too much was removed. Some doctors advocate only opening the dura and cauterizing the lower end of the tonsils. This sounds terrible, but has evidence to back it.
Chiari patients have abnormal tonsil tissue (again this is part of the brain) and they don't know if its abnormal due to having been damaged by the chiari or if it is abnormal because they are chiari. Some doctors argue the tonsils don't even function in chiari patients. (The actual purpose of the tonsils is still relatively unkown).

Duraplasty (The surgery where they open the brain sack) involves a patch being added to the dura. This has risk of a leak. Which is obviously a serious risk. Doctors disagree about the type of patch that should be used. Skin graft from patient, cadaver, cow heart (this is rare now) etc.
Anytime the dura is opened the system resets. Patients take a long time to recover, all senses are heightened, and exhaustion lasts for a long time post-op. It is a MAJOR surgery.


Surgery is terrifying and going to be immensely painful for Camden. I don't know how to choose that option.

The option of waiting is hard as well. Chronic pain for Camden's life, symptoms Camden can't even tell me he's experiencing--and may never know to tell me because he has had them since birth and knows no different. Vomiting due to head pain. Dizziness. Numbness. Possible neurological damage. Possible spinal damage. Of course it is also possible to have no progression and just minimal head aches forever. *this option is hard for me to believe being as Camden has been symptomatic his whole life. (swallowing issues, reflux, benign myoclonic movements, head pain, random vomiting, struggle eating solid foods initially, temporary developmental delay -- these are all things Camden has experienced that fall under the scope of Chiari symptoms).

Some doctors advocate surgery as a last resort. Others do not believe Chiari is a life-long disease. They believe it is simply an anatomical abnormality that can be corrected. I tend to agree that it makes logical sense that the sooner it is corrected the better off people may possibly be. The longer there is pressure left on the brain the more damage there is to the tissue. However, surgery is not a cure and has about an 80% success rate, which is a relative statistic because success means different things to different patients. 

I've come to realize I will have to make not only the choice about surgery, but also what kind of surgery, what doctor do I trust to perform it? Needless to say I feel so much pressure. To know things I simply cannot know. To understand things doctors themselves don't even yet understand.
Which should explain to all of you why I am so quiet all the time. So so so much thinking is going on in my brain right now.

I don't even know how to spill this to people and explain the feelings I am feeling all at once 24/7. I don't cry often anymore, because It just simply isn't productive.
I'm determined to be educated enough to feel confident when I feel guided.
I recently had a very special person look me in the eye and tell me she knew I would make the right decision, and that has meant the world to me. More tests and more time will hopefully select for us the seemingly most beneficial path, but I pray when the time comes I feel at least 90% positive of my choice.

Again, I KNOW there is a plan for Camden. There are just some plans I don't know how well I will be able to handle.
We shall see.


Hopefully this explains a little more of what's going on in our busy, hectic brains over here. Be patient with us!

 

Reminders of goodness

     Every night before I go to sleep I check on my little man. Some nights I'm so tired I check him, tuck him back in, and leave to bed. Other nights I stay a while. Sometimes I sit in the rocking chair in the room, sometimes I lay by him. 

Admittedly, lately, some nights I cry when I check him. Sometimes I'm overwhelmed by the desire to help him more than I can, to understand more than I do about everything that has been going on for him. 

Despite those emotions, every single night without fail I feel an overwhelming sense of gratitude as I watch him sleep. 

Camden's sweet little spirit will get to be a part of my life for eternity. He is the goofiest most inquisitive little boy, with a big big heart. He giggles at most everything and makes up new words everyday. He loves to be chased and loves to learn new things. He loves all things water, and loves the snow so much sometimes it's the first thing he asks for in the morning. 

I love the way he trusts me. The way that he relies on me and the ways he pushes me to be better every single day without even knowing it. Sometimes I'm not sure how I got so lucky to get to call him my son! 

He's definitely my little trooper. 

At this point Camden has days where he complains of head pain and he randomly throws up. I can't imagine the type of head ache you have to have to throw up multiple times, but he keeps chugging on like nothing is wrong. Occasionally he stops playing to come to me and tell me his head hurts and sits with me for about .5 seconds then runs off to continue whatever he was doing. 

The surgeon hasn't yet decided the plan for Camden, we need another MRI, this time of his full spine, and then hopefully decisions can be made. 

It is easy to feel a little angry for Camden's sake about all he has/is going through at such a young age, but I was recently reminded that there is always good occurring too. 

Tuesday we had our ultrasound and we were blessed with a very thorough tech. It was the longest ultrasound I've ever had. She didn't know our situation really, but I needed to be able to have that time of just watching our growing baby move around. I needed to be told she's healthy, and there's no sign of a chiari malformation at this point, but more than that I just needed to be able to see her and remember her. Life has been kind of crazy and focused on this one thing lately it was a moment to slow down and stop. It was one of the first times I have felt true peace lately and it served as a pleasant reminder that so much good continues to happen so long as you're willing to remember it during the bad times. 

Camden continues to smile, he continues to jump around and get into mischief, and he continues to jabber to my belly at random points in the day. 

I continue to tuck him in every night, be way too sentimental, and to always marvel at how adorable that kid is when he sleeps. (: 

We are blessed, and we are grateful. 

When you are too smart for your own head.

   

There are a few things I know for certain.

1. I am so blessed to be a mother and a wife.
2. Heavenly Father always has a plan for me, and for my family. Even if it's not my plan.
3. The love one has for their own child is near impossible to comprehend until felt yourself.
4. Enduring well is the greatest struggle of life.

That's about all I know for certain at this point..

    It has been another couple months of adventures in the Wright household. It started with the flu from Camden. He woke in the middle of the night throwing up, and continued to throw up every so often until morning. This was my first experience as mom with child who has the flu. Someday I think I'll appreciate when the child can actually aim and knows to try to get to the toilet. Making it into the bowl was a hard concept for Camden.

 Exactly a week later Camden woke up in the middle of the night and threw up just once. A couple of weeks later Camden woke up again and threw up ten times over the course of the night. This pattern continued so I called his pediatrician and they asked me to come in. We couldn't see Camden's regular doctor because he wasn't in. I explained that he was vomiting only at night and I couldn't find any food patterns or triggers between episodes of vomiting. The pediatricians that were at the office that day all met together to discuss what route we should take. They called his pediatric GI  and sent us to their office. The GI ordered several tests. Stool samples, blood work, allergy tests, ultrasound etc. Camden was negative for any allergies, negative for any bacterial infections, and showed no abnormalities anatomically speaking. Around this same time Camden was complaining about a particular location on his head hurting. Then one night he woke up in the middle of the night just screaming and completely inconsolable. I assumed he was having stomach pains, but nothing at all would calm him down. Which is highly unlike Camden. It took 4 hours and finally a long car ride to get him back to sleep. The next day he was happy as a clam, same as every other time he woke to throw up--always fine during the day.

So I called the on call doctor at his GI and explained that something had changed and he was in severe pain. They scheduled another appt and we discussed theories with the GI. Between that phone call and the appt Camden had a few of his myoclonic episodes, which we have not seen in a long long time. I attended the appt and I told her about the head pain and episodes and she didn't comment much on it. She told me that she thought he had had a bacterial infection that had either run it's course by the time we tested or not shed when I collected the samples. She ordered more samples and explained that many bacterial infections leave a temporary lactose intolerance so she put him on a dairy free diet.


I left less than satisfied and called his regular pediatrician. I explained the head pain and all the extra symptoms and he made an emergency appt for a pediatric neurologist. (So grateful for a doctor who is willing to call me personally, and then personally called the neurologist to tell him to squeeze me in within a week!).


We met Dr. Ross, the only neurologist I have ever semi liked. He flat disagreed with the GI. He said there was no way his vomiting was digestive as it ONLY occurs at night. He said that head pain and vomiting is a good sign of too much pressure on the brain. When you lay down pressure increases and can cause you to vomit. He explained he wanted to do a spinal tap and an MRI. I was not too keen on the idea of a spinal tap as Camden hadn't thrown up again in a while. he still was complaining about his head pain (he complains multiple times a day every day) so I was on board for an MRI.

The Doctor pushed because toddlers have to be put under to perform an MRI and put under for spinal taps. If we did them at the same time he wouldn't have to be put under twice, but again I couldn't justify a spinal tap for just convenience. He told me there was another lesser test we could do to check for pressure--an eye exam.

I agreed to have one the Monday before the MRI (this past monday) and if it showed pressure then we would do the spinal tap at the same time as the MRI.
I was really nervous for the MRI because I knew it would be hard to see Camden get put under, and really hard to walk away from him and not be there for the testing.

We did the eye exam and while it was basically torture for Camden (he's had a lot of that lately..) there was no sign of pressure. So I said no to the spinal tap and we went forward with the MRI.

Thursday morning we arrived at the hospital at 7:15am. Camden was in new pjs and lighting mcqueen slippers and ridiculously excited about having "ma-keen" on his feet.
He had to be fasting and woke early so he wasn't too happy about much else.
They checked us in and explained how it would work.
The MRI would take 2 hours and he would first be put under by gas, then an IV would be put in to keep him asleep.

I carried Camden in to the MRI room and I helped pin him down on the bed as he had the mask on. Camden hates doctors for one, and for two no toddler would just lay there with a mask on their face so he tried his best to fight it. I told him I loved him and I was sorry and his screams got more and more faint until he went limp. His breathing looked really weird and labored to me so I asked if he was breathing okay and they assured me it was normal and told me to kiss him and say goodbye.

I most definitely bawled. It was not a fun thing to watch, and I did not like leaving my baby with strangers. Not to mention I was terrified for the test results too. The nurse explained to us where the cafeteria was and different things but I didn't listen. I just asked how will you get ahold of me if you need me? So she gave me a pager like they do at restaurants when you're waiting to be seated.
I didn't allow that thing to go in any pockets or bags I carried it all day. And I bought Camden a tiger at the gift shop because I felt bad lol.

He took about 1.5 hours and then they told me he was in recovery and they would get me when he began to stir. It took about 30 minutes of torture and then I got to go see him. He had a really hard time coming out of the anesthesia and it was sad but funny at the same time. He sounded like a cow and could NOT get his eyes open.
His first clear request was for "cars". So after I rocked him for a while daddy took him and he ate crackers while watching the movie Cars. We were then discharged and ready to go.

We walked across the street to the neurologist for our immediate results. He saw us right away and pulled up Camden's imaging.
He explained all that was normal then began to point what was not and my heart literally sunk lower than I have ever felt it. I hadn't really fully expected for there to be an abnormality.

Long story short, Camden has a chiari malformation. It's a malfromation of the cerebellum and means that his lower brain basically extends too far down into his neck. It puts pressure on the spinal cord and can cause chronic pain and head aches. It also blocks the proper flow of cerebral spinal fluid as everything is too cramped down there. The doctor showed us where we should see a thick line of fluid and showed us how Camden had a really really thin line meaning the fluid was having a hard time getting through. The pressure causes vomiting and is worse when laying down. The place where it is malformed is the exact point Camden tells me hurts everyday. It is also the exact same point where he loses control during an episode, and the neurologist told me it is definitely possible it is all related.
It requires surgery to fix, which even as I type just makes me cry. Camden's is not considered severe and it is not an emergency must be done right away type of surgery. We have time to consider our options.

This is a very over simplified representation, but simple for you. 

It is hard because with a toddler it is impossible to know the extent of their symptoms. This malformation can cause numbness, weakness of muscles, vision problems, etc etc. We do know he has daily pain, as he constantly tells me it hurts and points to the spot on his neck/head.
If left there are risks as well.
If the flow of CBS is blocked proper signaling cannot occur within the brain. The CBS could find another path (the path of least resistance if you will) and he can acquire cysts along his spine that are basically sacks of the fluid but they can damage his spine.
He is also currently high risk for serious head and spine injury if he falls the wrong way.

We still don't yet know if his malformation along with his symptoms are enough to warrant the need for surgery right away. We meet with the surgeon Friday and will be able to ask all of our questions and make more educated decisions.

All we know for certain at the moment is that we don't like the idea of Camden being in chronic pain, and we are scared of the risks of leaving it.
However, we also know some details of the surgery and it is a big big deal. Patients who have the surgery are usually in the ICU for 1-3 days post surgery and then in recovery at the hospital for 3-5 days after that. We know that it is considered a very painful surgery and I don't like the idea of my son's head being opened at all.
We hope that the surgeon will help us make a concrete decision we feel best about.

At the moment we are still kind of just coming off the initial shock wave. Definitely not something I saw anywhere in my future, nor in Camden's. Camden continues to be his goofy, unique self. His stranger danger continues to get worse the more testing he has, but he likely has a lot more imaging coming up after we meet with the surgeon. I also really cannot blame him. The kid is nearly two and he's had way more exams than I have ever hard.

However he is still a really happy boy and that helps a lot. He now knows how to say "BIG BRAIN!" and it makes me smile. We joke that he's just too smart for his own good so his brain doesn't fit in his little skull. He still carries around his tiger that I've taught him to call Chiari. I assume she will be there with us for all upcoming tests and procedures.
We know we will be able to come to a decision we feel at peace with, and we know Camden will be okay, it's just the getting there that will be hard.

The MRI was hard enough for me, surgery on my not-even-two-year-old's brain? I told Garth if I don't go into preterm labor it will only be by some miracle. 

Camden after his MRI. He would dance to the piano, and then rest for a bit. 

I think we are still at a very sensitive point. I don't like answering a lot of questions, and I really don't like people telling me all the bright sides I should see. Obviously there is a lot I'm grateful for, but there is also a lot it will take time to find any amount of gratitude for. I also feel that it is okay for me to be stressed, it's okay for me to be sad, and it's okay for me to be worried. It's my son, and it's only been two days.
So mostly I write this post not because I want to go on to talk about it with the world daily, not because I want attention, but because the more good vibes and prayers that are sent my son's way the better I feel about us going forward. So I figured getting it out there would be a good way for me to move forward and find my peace for now as well as acquire as much help for Camden as possible.

If you made it this far in reading... good job I'm impressed [:

First trimester

Gosh my Facebook was crazy last night. Thanks for all the loving and support ! We are very excited.

As a little update, we are almost 13 weeks! And yes we are due Christmas Day. 

Let me back track in time a bit and then we can answer all the typical questions. 

I was considering going into great detail about our journey to this pregnancy but I'll just share a brief overview. I felt it was time for another child long before we had planned to have another. Garth was initially not on board haha! So we waited and we discussed and we contemplated. My biggest thing was I didn't want a December baby. (I was so silly lol) 

Anyways, I had an experience that hit me hard and I knew beyond a doubt we needed to try now. So we did. 

I had already been off the pill for a while due to another miscarriage. A very early one considered just a non viablepregnancy. This was on Camden's first birthday. Anyways, we didn't get pregnant right away and I was experiencing some pain and issues so I went in. So fast forward, I ended up getting a laparoscopic surgery to remove and confirm I have endometriosis. The doctor felt it would be best to confirm I have endometriosis and then hopefully by removing it I would be able to get pregnant easier. After the surgery I was told they were unable to remove all of it and I would either need to go on lupron, a pretty intense injection, or try for a time to get pregnant. (Pregnancy kills endometrial tissue). 

So we chose option two but knew we had a certain "limit" there as scar tissue grows with each ovulation. So then we got pregnant fast and I calculated our due date the moment I saw the positive test and I just laughed. December 25th. Haha the very thing I had wanted to avoid ! I said oops ! And moved on. 

It turns out however, that during my surgery they lifted me up by one leg to flip my intestines. A ligament in my hip tore during that, but by the time that was all established I was pregnant. So no surgery options for me! So I've been sad to be in some pain and unable to run. But baby and I have been walking up a storm and continuing our HIIT workouts as much as we are able! It was kind of a trial for me as I was in the end of training for my first race with my sister and was then told I couldn't run in it. But there are more important things in life right?

So the grand question: are you as sick as you were with Camden?

I got sick much earlier this pregnancy than I did with Camden. I was trying with all I could to avoid medicine this pregnancy. I became unable to function by 7 weeks. So they started me on diclegis which is like a vitamin b supplement medicine my mom took with all of us. It's considered the safest medicine there is for pregnancy. It didn't work for me with Camden so I was skeptical but they convinced me if I got it in my system early enough I could probably avoid what I was on with him. They told me that if I waited until I got to the point I was at with Camden I would be past the time period in which I could try different things to help me, because once you are dehydrated you can only do so much.

With Camden I was on the heaviest duty they had because without it I was hospitalized for dehydration. So there are still two safer options between diclegis and zofran, what I was on with him. Zofran since having Camden has actually moved down the safety scale as well. 

So. Basically for a while I was all over. I would have days I threw up 10+ times. Days I threw up once. I have finally kind of leveled off and I throw up 1-3 times every morning. It's like clock work really. And let me tell you. 

I LOVE IT.

yes I throw up every day, but I feel good for the most part. Something I DID NOT have with Camden. There were no good days with him. Just days of terrible sickness. So I'm basically on cloud 9 this pregnancy, and I am not on zofran! So YAY FOR AMY!

Other questions: we have our hunches about gender, but I'm honestly tired of hearing people tell me they hope it's a girl. Which probably sounds mean of me but people keep telling me girls are so awesome, everyone has to have a daughter, etc etc. well guess what? I have a son and I would be the happiest woman in the world if I had 4 more of him. He's wonderful. So we are happy with whatever (: 

We really are in no rush to get to the gender check. This pregnancy has been so low key and nice. No anxiety or stress just ready for it all when it comes (;  

Okay last question: Christmas. 

Of course I hope my baby isn't born Christmas Day, and I also don't think that will happen. Will I ask to be induced? No probably not. I like natural birth a lot and want to do that again! However, I'm not sad my baby will be the dreaded December baby like I thought. I was due Christmas Day. Those who know me know having a Christmas baby is so fitting for me. I also think it's going to be a very spiritual tender experience for Garth and I, that we will be blessed to have. A birth so close to Christ's birth, what could be a better reminder of the reason for the season ? I'm ecstatic and very happy about it all. 

So there's your update. We are happy and blessed and just enjoying our little journey as we go along. 

Here is how I announced to Garth:

Camden grabbed a book off the shelf for Garth to read about being a big brother. 

Here is how we announced to family:
We sent a text from Garth saying "I think Amy's obsession with Christmas has gotten out of hand this year. She already knows what she is getting Camden and has taught him to say it." And then sent this video. 

Winter meets Spring

As Spring approaches I have been reflecting on this past season.
Oh this winter has been such a fabulous one! We have filled it with so many memories. A lot of Christmasy adventures for the holidays, and now a lot of outdoor time. We have built snowmen and had snowball fights, and we have attended the zoo in short sleeves and sunshine. We love Colorado's weather it is so great. A little mix of everything.

We are the usual Wright family level of busy. Garth is working and attending grad school. He always takes on so much I am always so inspired by how happily he does it. He is currently working about 35 hours a week plus full time school. Tuesday Thursday are happy days because we get to have breakfast all together as a family before he leaves for the entire day of classes.

I have been really enjoying the area we live in. Our ward is just so awesome. We have made some great friends and they make my week so much better. We have a little work out group and it is much needed social time for the moms as well as a really good workout. I love it. We got really lucky with our ward having so many great and fun families!!
I feel really at peace where we currently live. Great friends, near family, good area-- I try not to think about the inevitable fact we will most likely have to leave it!

I enjoy being a stay at home mom. It is such a blessing. I've come to understand that it really is so hard, but I wouldn't change it. It is also wonderful and fulfilling. It just depends on the moment of the day sometimes [;

Camden is our busy bee. Gosh he is just so energetic. My sister told me not long ago that just watching him run around exhausts her. He is the typical into-everything-destructive boy. I love it. He's so fun. Currently he really enjoys being a "big helper". He helps unload the dishwasher, load the dryer and start it, dust, sweep, and pretends to vacuum with his shovel while I vacuum for real lol. Most of the time letting him help makes things go much slower, but he gets so excited I just can't say no. He loves all things that include some sort of ball.
He can play basketball forever, catch, soccer, baseball and golf.. he loves them all. Grandpa has been enjoying teaching Camden how to putt, and Garth has been enjoying teaching him how to bat. It's a good thing Camden likes sports so far, he has a lot of family counting on that.
He made it through nursery alone for the first time today (this is his third week). The first week he didn't make it very long, the second week I stayed with him most the time and then this week he did it! We are happy. I love nursery, it made all the little ones seem so old watching them color and have their lessons.


Tantrums seem to have really settled as Camden has learned to communicate better and grown up a bit. Of course he is still a toddler boy! But he knows what it means to go sit in time out (we do our timeouts on the stairs). So occasionally he will go over there and sit down in time out when asked to. Usually while in time out he has to sit still and I give him some sort of talking to, I'm not sure he understands but he always whispers "OKAY" back when I'm finished. Then we usually do our best to go correct his "wrong". He's really good at saying sorry or saying "CLEAN UP!" as he throws away his food he dumped. Sometimes I wonder if he enjoys the correcting the wrong too much and so he doesn't mind getting in trouble.

Camden can talk with the best of them. I'm really actually amazed at all he can say on a daily basis, I couldn't even count all his words. Which is probably only amazing to me because he is my first child!
But just to name a few of the typical words 18 month old Camden says:
"Hi" to everyone
"see ya!" when we are leaving anybody
"please" and "thank you"
"I want it" when he wants something
 "I see it" or "I see you"
"baseball"
"football"
He can say almost all his cousins and aunts and uncles names
"jesus" "church"
"I fell" when he falls down
"Hurt" when he's hurt
"help" if he wants help with something.
"happy" and "be happy"
"love you"
"sippy"
"snow"
"toothpaste" etc etc. He really just imitates us all day long so he learns new words often. I love it!

But probably my favorite thing is that every single night after prayers Camden gives each of us a hug while saying "awwwh", then a kiss, then says "push it" (asking if he can turn off the light).

He turns off the light and I put him in his crib and he says "bear?" I hand him his bear.
"Eli?" I hand him his elephant. Then he says "night night" and I say it back, then he says "LOVE YOU!"

It is the sweetest little routine ever. I hope it sticks around for a long long time!