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!!