You all got time to hear this shit because I have good news! Sebastian does not have a brain tumor! And more good news, he hasn't had a bad headache in a whole week!

via GIPHY

First, in case you didn't hear, Sebastian made it through the MRI without wiggling at all. The tech said he didn't have to re-do a single image and he did better than many adults! They were also very impressed that Brian had him practice ahead of time. I think the practice helped a lot, and that we impressed upon him how expensive important it was for him to be still for it.

We saw Sebastian's neurologist yesterday and she reviewed the radiologist's report of the MRI with us. There were a couple of spots, what they call Unidentified Bright Objects (UBOs), because they show up as just a bright spot on the image. They have no mass and so are not pushing on anything. They are very common on MRIs of kids with NF1 and do not cause any problems that they know of. I stumbled my way through a few abstracts of studies done on these spots, and they are studying the correlation of UBOs with learning disorders. But it didn't sound like anything definitive had come from these yet. Still very interesting as they all mentioned that a majority of NF1 patients had these spots on their MRIs, but only while they're young. Apparently the spots can lessen or go away entirely as they grow up. Fascinating, and definitely worth further study, but thankfully nothing to be concerned about.

The neurologist thinks Sebastian likely experienced his first migraine (and hopefully last in my mind), probably triggered from illness, since he'd been so sick right before. There's quite a long family history of migraines on my side, so it's not surprising between that and NF1, that he may suffer from headaches. The good news about that is there are plenty of us in the family with experience in figuring out headache triggers. So I'm confident we will be able to figure out his and help him avoid the pain as much as possible. 

With this in mind, we also took him to see my naturopath yesterday, as I knew from my own experience that natural medicine tends to be much more helpful in finding the source of things like headaches. And giving you gentler treatment options as well. Here we talked about things like diet, probiotics, supplements, and essential oils. I'm not against treating him with Ibuprofen, but I want to save that for when it's really bad. I like having other options for whenever it's not so bad, and ideas on working towards preventing it.

In my own experience, headaches are more often than not caused from something basic. Not getting enough sleep, not drinking enough water, eating unhealthy, and not getting enough exercise are at the top of the list. For me the list extended into things like inhaling any fragrances or chemicals, which can trigger an instance migraine complete with light sensitivity and nausea (seriously people, lay off the perfume and cologne, you're killing me). So yes, migraines suck, but I feel much more confident and prepared on how to handle this than any other diagnosis they may have thrown at us.

Next steps will all depend on if they come back at all, and if so when, how bad, any obvious cause, etc. So we'll see what happens. But in the meantime, I'm going to keep celebrating every win we get on this NF journey. And doing my happy dance, which I'm not gonna lie, probably looks a little something like this:

via GIPHY

Well Happy New Year! I sure hope your year has started off better than ours. It's been, well, challenging to say the least. And not just since the new year, but for almost a month now. As if the holidays aren't stressful enough, we had to add a hefty dose of illness to ours.

It all started on December 17th. Sebastian began throwing up rather suddenly. It seemed to be some sort of stomach virus as Oscar developed the symptoms later that day as well. They both recovered quickly from the stomach part but also seemed to develop colds right afterwards. Nothing too surprising as it is Oscar's first winter in preschool and Sebastian had made it most of the school year so far without getting too sick. Thankfully, Brian and I managed to avoid the stomach part of it but I did catch their cold which hung around for weeks. Typical winter for me.

The odd part happened a few days after the boys seemed to be through the worst of this bug. In the middle of the night on Oscar's birthday, the 22nd, Sebastian woke up screaming in pain with a headache. His exact words were "my head is exploding." Not exactly the words you want to hear your child use...ever. We did what we could to calm him and gave him some children's tylenol. He suffered on and off for several days. By Sunday we were very concerned and called the advice nurse and his pediatrician's office to get the on-call doctor. Both said the same thing. We should probably go to the ER if we think it's that serious.

We hesitated at that. Not only because the ER is obscenely expensive, not covered by our insurance unless the deductible has been met, and a ridiculously long wait for mediocre healthcare. But because we weren't sure if the doctor really believed Sebastian needed emergency care, or if it was because he has NF1. Headaches are very common among people with NF. Sometimes it's from a tumor, but not always. The fact that he had been sick a few days before and was still fighting a cold made us question if this was really an NF issue versus just a really bad sinus headache. Sebastian has always had a low tolerance for pain and been on the sensitive side, which makes it very difficult to tell when something is serious. 

So we waited it out, got him in to see his doctor on the 26th. She was uncertain about the cause of his headaches and remained on the fence about if we should go to the ER still. The issue being that scheduling imaging and getting the results takes a long time. We were very frustrated by this. Why is our system setup in a way that we can't get urgent healthcare? It's only super slow or emergency for things like this, no in between. And yes, I called EVERY urgent care in our area, and not a single one of them have a CT scan or MRI machine. The doctor recommended going to the ER if any new symptoms developed or the headaches continued after the cold symptoms were gone.

The cold went away and the headaches continued, but just in the afternoon and at night. He woke in agony again late on the 27th, and so, sick of the uncertainty, Brian took him into the ER. They did a CT scan and said it was clear. The doctor labeled them "tension headaches" and said to keep treating with Ibuprofen and Tylenol.

Tension headaches seems like a very broad diagnosis, especially since he's had no history of headaches. It sounded more like one of the many labels that actually means "we don't know." Sometimes, instead of a vague diagnosis, I'd prefer the doctors were honest and just admitted to not knowing. Some people think the label helps. But going on 5 years now knowing about Sebastian's NF, I'd have to disagree with that. We have the label. It doesn't really help, but instead trades the stress of not knowing with too much knowledge. We know all the things that might go wrong. It makes every tiny thing that happens to him into something much bigger. Maybe he does have a tiny tumor in his head somewhere causing these headaches. Or maybe he just has a lingering sinus infection, crappy posture which is hurting his neck, clenching his teeth, an unknown food or environmental allergy, not drinking enough water, not sleeping enough, etc. etc. forever and ever. The list of things that can cause a headache is ridiculous.

But as everything with NF, we simply do not know. And the only way we have to even attempt to know, is to run more tests. The headaches continued at night for over a week. Some nights it wasn't so bad and others we slept very little. It got to the point where we started giving him Ibuprofen in the evening before dinner just to avoid the onslaught of pain. And it gave us all some much needed sleep. Then Oscar caught yet another stomach virus, and two days later it hit the rest of us at the same time. It's been a rough couple of days. But oddly enough, Sebastian has not complained of a headache since then. Maybe he's just been distracted by the stomach pain? Guess we'll see tonight as we're all on the mend now.

But last week when it was still bad, we told the doctor we were still concerned even though it didn't seem to be an emergency. They tried to schedule an MRI but of course their soonest available was several weeks out. They put in an urgent request to a different hospital, this time at OHSU (which has been better anyways in our experience), and he is going in tomorrow afternoon.

If you've been following my blog for awhile, you know we've avoided the MRI for years because for a child, it requires full anesthesia. In the past we were told the youngest a kid had made it through without being sedated was 9. Not sure when this changed, but now they offered a different option. They can let him watch a movie instead of sedating him. This was amazing, and hilarious, news. Amazing that there's a chance he can do this without the drugs. And hilarious because what does that say about TV? Yep, we're still laughing.

So Brian, being the resourceful man he is, decided it would be a good idea to have Sebastian "practice" for the MRI. He had him lay on cushions on the floor and watch the TV upside down, but this didn't seem quite enough, or good on his neck. Even in that awkward position, he made it about 30 minutes without moving. But Brian worked on a better design, and came up with this:

That's an iPhone above the glass

He's made it the 45 minutes, but I did see him wiggle a couple times. Hopefully that will be acceptable as tomorrow is almost here. If you have any positive vibes, healing energy, prayers, magic crystals, or whatever happy thoughts you have to send our way, we could use it and are, as always, grateful for your support.

 

Holy crap it's August already! And I haven't posted anything in over a month! Isn't it amazing how once your first kid is in school, summer's are suddenly insanely short?! I don't remember feeling so crunched for time a few years ago, not like the last couple summers. The school year really encroaches on the summer and the free weekends to get in all the fun stuff. I do my best to make the most of it by cutting back hours at work and taking as many Fridays off as possible. But still it is flying by. So today is a short recap of some of what we've managed to jam into the short summer so far.

A few short days after school got out, Sebastian flew to Nevada to spend a week with his grandparents. They took him and his cousins to San Diego, to the beach, safari park, and all that fun stuff. While he was gone, Brian, Oscar, and I went to the beach.

This is how we keep them in line...bury them!

Then we drove down to Nevada after they returned. We spent the week of July 4th visiting family, and as many friends as we could squeeze in (sorry to those of you we missed!). I was again rudely reminded how much I HATE Nevada summers and that intense, high elevation, dry as dust, desert heat! It shouldn't be 90 degrees at 9am. Ever. We'll be trying to schedule our visits in spring or fall from now on. Jokes on me now that it's over 100 degrees even here in Oregon this week! Breaking all sorts of records that are as old as me. Fucking climate change.

Adorable Arlie, our great niece
Did I tell you guys I'm a great aunt?! 

4th of Julying in Carson

Fireworks at a distance, the best way with littles

On the drive home we stopped at Salt Creek Falls in the Willamette National Forest. Just what I needed after all that desert. Trees make me happy in a way the desert never has.

And then of course our anniversary happened right after we got home. 14 years married, 16 together...we've officially been together over half my life. How weird is that to say?! Very.

The secret is to always be very serious

The weekend after we got home from Nevada, we rented a house in Seaside with some friends. It was a very lovely weekend. And quite a nice change in weather after all that desert heat.

The following weekend was the annual NF Walk. It seemed there weren't as many people there this year which was a bummer. Guess I'll have to get my butt in gear next year and help spread the word more. We still had a good time though of course. It's always great to see what awesome and supportive people we have in the NF community here in the Portland area. Thanks again to everyone who walked or donated!

Sebastian made it the whole way again!

NF Hero Ceremony

Damn my kids are cute!

The bear was thirsty

Buckle up for safety!

Just this last weekend we did some hippy camping in the Tillamook State Forest. Similar to last year's, but this time we went to the west fork of the Wilson River. And some friends joined us the first night. It was so peaceful and relaxing. I was reminded how much more I prefer this type of camping to campground camping. At a busy campground, it's all noise, chaos, and pavement. It doesn't really feel like you're spending time with nature. I find camping with kids to be a lot of work and not much sleep, which makes me not enjoy it nearly as much as I used to. At least this way was more relaxing and felt much more worth the work. I'm still tired though.

  

Brian will be attending pickathon this weekend while I spend some quality time with the boys. I'm hoping to take them to the beach one day and maybe the movies another. But they both just came down with a stomach bug! No fun! Here's hoping they get over it quick.

Oscar was tired after camping too

The rest of August is looking busy as well, with friends to visit and probably another hippy camping trip. I'm hoping to keep a couple weekend days free to just relax. I just hate feeling over-scheduled and constantly busy. I remember thinking summers were relaxing and somewhat boring when I was a kid. How different it feels from the parents point of view! Really I want it to feel like this...

Ahaha gotta love the 90s. You're welcome.

How's your summer going?

This popped up on my Facebook memories on Dec 17th:

Wow I don't believe it's been over 4 years since we first heard Sebastian might have NF1 (neurofibromatosis type 1). My memory of the day we first heard that word is still very clear. Brian called me at work not long after Sebastian's check-up. I stepped outside to take the call. I answered, expecting to hear all was well. But instead, I heard concern and frustration in Brian's voice as he told me what the doctor said. My heart immediately sank, before I knew anything about it. Not because I was convinced there was anything wrong. But because I had so been hoping for a good check-up for him, finally. But it just wasn't to be.

Re-reading that post now brings up so many emotions. It's funny to realize how much I just HATED all his doctors, even though they all turned out to be good. Like his pediatrician at the time. I had never even met her at that point but I was pissed she didn't give Brian more information (which I still think she totally should've). In retrospect, I think she just didn't want to scare him if she was wrong. And also general practitioners seem to be well trained, or maybe almost forced, to recommend a specialist for anything that ails us past the basics. I didn't realize at the time how incredibly lucky we were to even have a pediatrician who knew what NF was and recognized the signs. If anything serious had been wrong with Sebastian, catching it early could've made all the difference in helping him.

When reading this, I also feel immense sadness and compassion for the 2012 version of our family, and how perfect our lives had been going until that moment. The year leading up to this news was one of the most stress-free years of my life. We were enjoying living in Oregon and having Sebastian stay home with Brian and being well and healthy more often. I was loving my job and being debt-free after our short-sale had finally went through. I was finally feeling healthy myself, and running, cycling, and doing yoga more than ever before. We had even started trying for baby #2. Life was good.

Obviously the diagnosis changed our lives forever. I used to feel guilty for my depression from this, but as I progressed through my grief, I realized there was nothing for me to be ashamed of. It's hard to go from feeling like life is perfect in one moment to total shit the next. And it's okay to hurt for your child. It's okay to be depressed when you're left helpless. It's okay that I was in denial about it for a long time. It was a rough couple of months after this post as we worked through the process of getting the diagnosis confirmed, seeing all the specialists, doing all the research and educating ourselves as much as possible. But in the end, it all turned out well. We learned this diagnosis was not a death sentence, not even a guaranteed rough life sentence. It's just a label (and we know how I feel about labels). His condition has not worsened. Physical therapy is helping him increase his strength and coordination. He is smarter than ever, reading a full grade ahead and asking me a new math problem daily. He is perfectly healthy, despite the NF1.

I am beyond grateful for how well he is doing. I continue to choose to believe only the best for Sebastian. I'm confident in the knowledge that positive thinking and not worrying every moment is by far the best thing I can do for my kids, no matter what happens in their lives. But a piece of me still wishes I could just go back and hug myself 4 years ago and say the words I needed to hear and believe...

🎶"don't you worry, about a thing, cause every little things gonna be alright."🎶

I have been seriously slacking on blog posts lately, but for a good reason. I've been working on another post for The Mighty about dealing with depression after your child receives a diagnosis, not just for NF, but any medical condition. Parents don't often like to talk about the depression they might experience over their children, but like all mental illness, I think it's important we all start discussing these things. So give it a read and let me know your thoughts!

http://themighty.com/2016/06/experiencing-depression-after-your-childs-diagnosis/

Last day of Kindergarten

Today I did a guest post over at my friend Kristen's blog, in honor of NF Awareness month. So head over there and check it out.

https://invisibleillnessbattle.wordpress.com/2016/05/31/be-our-guest-nobody-said-it-was-easy/

Today is World NF Awareness day. Neurofibromatosis (NF) is a neurological disorder caused by a mutation in the NF1 gene. This is caused by either a parent with NF passing on the mutation (a 50% chance) or a new random mutation. NF happens to 1 in 3000 births, making it a "rare" condition. But it is more common than cystic fibrosis, muscular distrophy, and Huntington's Disease combined. For more information, visit ctf.org. 

For NF Awareness day, I want to express my gratitude for something I never thought I would be thankful for. I am thankful for whatever caused my son's random genetic mutation in his NF1 gene. I know I haven't always been grateful, in fact, I'm usually quite the opposite. Usually I'm saying why him? It's not fair. And it still isn't fair, but neither are many things that happen in this world. Fair is an illusion we all wish was real.

But I am grateful for this experience, as unfair as it is. Before having children, I never gave much thought to what it would be like to raise a child with special needs of any kind. Those types of things always happen to other people right? Wrong. These types of things happen to anyone, indiscriminate of pretty much all factors.

Having a child with this diagnosis is never easy. Sometimes it's downright frightening. But my eyes have been opened to so many things they never would have been otherwise. The level of compassion and understanding I now have for anyone with a chronic illness or disability, or child with either, is not something I would have achieved without this experience. There are some things, many things actually, in life you just can't understand until you experience them yourself.

So I am grateful for the compassion, patience, and empathy I have learned through this experience. I'm grateful for the opportunity to help raise awareness for NF. I'm grateful to be a part of the NF community, a group of people who truly care for one another. And most of all, I'm grateful for the amazing support we have received from our family and friends along this journey. Sometimes the world can be cruel and ugly, but when you receive real support from people you love, it's much easier to see past all of that and into the staggering beauty in the world.

So my thanks goes out into the universe, bringing me one step further on my journey of acceptance of my beautiful son's condition. Because of it, our family will be able to make a difference in the world in a way I never imagined.

If you would like to join us in spreading awareness, the NF Walk will be happening in Portland on July 24th. You can join Team Sebastian here: http://nfwalk.org/portland
 If you'd like to make a donation instead, you can do that here: https://join.ctf.org/fundraise/team?ftid=75933

It's been a little over 3 years since we were told Sebastian likely had NF1. Since hearing this news, I went through all stages of grief. First was definitely denial. Here I stayed for a solid 4 months, from the moment the pediatrician told us her suspicions until we got the results of the DNA test. Then it was anger. Anger that this was my child. Mine. This happens 1 in 3,000 births, why his birth? Then bargaining... what did I do wrong? What could I have done different? What can I do now? Once I did enough research to finally convince myself that there was nothing I could have done, or could even do now to change it, depression set in. For me that depression has not gone away fully. It's a lot better, but if I think too hard on it, I am consumed by too much sadness, too much helplessness.

Since we first received this news, we've taken him to 6 specialists (neurologist, geneticist, opthamologist, physical therapist, orthopedic, and developmental specialist), plus had him evaluated by the school district by another physical therapist and an occupational therapist. The consensus from all of these doctors was that he was doing great for a child with NF. All that was needed was the little bit of help he received from an OT on learning to write. Even that, in retrospect, I think all he really needed was more time to catch up to his peers. After the last doctor, we vowed to take a break from all the specialists, who despite saying he's fine, all want to see him annually. But we decided they can fuck off because that's too many damn doctors appointments for a healthy kid.

However... with a disorder like his, it's hard not to worry about every little thing. Sometimes you want to just ignore it and others you can't help but think, if I ignore this will it turn into something horrible? Something I could've prevented if I'd done something sooner? In the last several months we had become concerned with a few things. Sebastian's been in gymnastics for 2 years and made little progress. He's also been crying whenever we try to get him to run too fast, and consistently complains about pain in his legs. After much discussion we decided we needed to make sure we were truly doing everything we could. I knew that meant it was time for a check-up with a neurologist to see if he really did need an MRI.

We said if we ever needed to take him to a neurologist again we'd find another one. Well the only other place that seemed worth our time was OHSU, who is booked out until the end of the year for new patients! What if there really was something wrong? I just didn't want to wait that long. That's when I really started thinking back to the neurologist he'd seen, and I was remembering that hard denial I had been experiencing during that time. I have written less than nice things about her in more than one post. Now that I'm out of the denial phase, I can honestly say, she didn't do anything wrong, she just did her job. But since I didn't want to hear that there was anything wrong with my little boy, I wrote her off pretty quickly. I realized it wouldn't have mattered what any doctor had said or done at that point, if it wasn't good news I didn't want to hear it. With this realization, we decided to give her another shot.

We saw her this morning. She asked us lots of questions about the leg pain, and all the specialists we'd seen since our last visit with her. She did her evaluation of him again and her results this time were very good. She says he's actually doing really great, and she sees no need for the MRI. Her tune seemed to have changed a bit as she didn't seem to recall being that concerned about him needing the MRI last time. Maybe it was just how I was feeling then, or maybe she has changed her mind about when an MRI is needed, who knows. But there was nothing wrong with her abilities as a doctor this time, I think it was all about perspective.

Amazing how often in life your perspective can change so drastically, and how different everything is when it does change. I have been flooded with a huge wave of relief since hearing that he doesn't need an MRI. Maybe that's not such a big deal for some people, but for me, where I was at with my concern for him, it was the exact thing I needed to finally help me into the acceptance phase of this grief. Obviously this day could've gone very differently, and there's no guarantee something won't change for him in the future. But for now, I'll take this moment and enjoy the hell out of it because my baby is ok.

Today is World NF (Neurofibromatosis) Awareness Day. Across the country, bridges and buildings will be lit up blue and green in hopes of spreading more awareness for this disorder which affects over 2 million people worldwide, my son Sebastian included.Here is a short video from CTF (Children's Tumor Foundation, ctf.org) that shows you this is affecting people across the world. 

 Of course after watching this, as YouTube always does, it comes up with suggestions for you to watch. The next video that came up for me was this:

Now that I've composed myself I can attempt to communicate how this has affected my family. Sebastian has so far been very lucky. He has had minor developmental delays, but he has already caught up academically. He seems to have the tendency towards ADD (learning disorders are very common with NF), but as long as someone is there to help keep him focused, he does very well in school. At home, we notice that keeping him active and limiting his screen time, helps enormously with this as well. Physically I'm not too concerned at the moment. He's very good on his bike and is catching up on walking and running. He has some very small bumps on his back that we're watching, and now we're noticing some on his stomach as well. Maybe these are nothing, or maybe they'll be neurofibromas. It's too soon to tell, and even if they are, we won't do anything about them unless they cause a problem. He has had no signs of major tumors or illnesses.

He has not had a rough time with NF so far. The issue is the not knowing. We simply don't know what's going to happen to him. Some people go through life with little to no symptoms. Others are very sick from it. There is nothing we can do about it. There's no treatments. There's no prevention. There's no cure. We can't give him medicine or change his diet or exercise or anything to help or hurt it (although I would bet keeping him healthy won't hurt). It is an incredibly frustrating thing as a parent to know that your child could get very sick at any moment and there is no way to prevent it. Or maybe he'll go through life without a problem. We just don't know.

These statements are all true for anyone really. Life is unpredictable at best. But when you or your child has a diagnosis like NF, it makes these things that much more of a reality for you. Especially since there is very little information about Neurofibromatosis. For a disorder that is more common than cystic fibrosis, muscular dystrophy, and Huntington's Disease combined (http://www.ctf.org/Learn-About-NF/Facts-Statistics.html), you'd think there would be a wealth of information about it. But there are no answers to our most burning questions. More research needs to be done so that people and families affected by this disorder can have the information they need to live as normal a life as possible. Or even better, so that they could someday find a cure.

So please help us spread awareness so that we can all someday #ENDNF. If you're in the Portland area, join our team on July 26th as we walk to raise money and awareness for NF research. If you have time to give and are interested in volunteering, please let me know! If you have money and not time, you can donate on this page as well.

http://ctf.kintera.org/nfwalkportland2015/teamsebastian

Last month we took Sebastian to the Providence Neurodevelopment Center. This is the place that books out over 6 months in advance, so we were quite curious to see what they had to say. I thought the appointment was with a Pediatric Neurologist, but turns out it was a Pediatric Developmental specialist. He did an evaluation of Sebastian, and the results were good. Sebastian now fits into the normal ranges developmentally, on the lower end for gross motor skills, but at least he's in the normal range now. This is great news that he has already caught up to his peers, and means he'll probably do just fine in Kindergarten come this fall.

But... there's always a but. We were disappointed that we waited over 6 months to get in to see this doctor and he did nothing more than the same evaluation that a regular pediatrician does. He was good and nice and all that, but Brian said it was literally the exact same questions and exercises that his pediatrician had done at his last check-up. Why are we told to go see all these specialists when they're not actually doing anything special? It's a giant money-making conspiracy, seriously that's not just hippy talk. It really is. This specialist just kept referring us to more specialists too! He insisted Sebastian needs to be seen by a neurologist annually as well. This is after he just said he's doing fine developmentally. So he needs to go see another specialist for what? The exact same evaluation? I emailed the genetic counselor at OHSU (where he had his DNA test done, so far the only specialist we've seen that was worth the time and money) and asked her opinion. She said for NF1, they don't recommend patients see a neurologist unless they're having specific problems. I was so happy to hear someone agree with us. The only neurologist he's seen so far was not our favorite doctor as she wanted to do an MRI (that required full anesthesia) even though he didn't have anything wrong with him and didn't even have a confirmed diagnosis at the time.

This developmental specialist also recommended Sebastian be re-evaluated by the physical therapist (which was not covered by our insurance last time and cost over $300). Since he's getting the free assistance from the school district, we opted to go that route instead. She said the same things we've noticed, he still is not able to do a true run (where both feet are off the ground for a moment). But he is able to keep up with most of his peers with his fast walk. She didn't have any concerns and neither do we. So for regular physical therapy, we'll continue with gymnastics, bike riding, and walking. I'm also hoping to add more regular yoga at home for him as he really enjoys it (for a few minutes anyway). He's been taking a karate class as well but admitted yesterday that he wants to do something else after this class is over.

I understand that all of these doctors are just covering their ass. I get it, we live in a crazy country where plenty of people are just waiting for their doctor to make a mistake so they can create a stupid lawsuit. I just don't want to put Sebastian through any unnecessary tests or procedures. He may have a lifetime of poking and prodding ahead of him, so I'd rather save it for later when he might actually need it. Especially things like MRIs which at this age are a much bigger deal than when he's a bit older and can sit still for the whole thing without needing sedation. If he shows signs of a tumor we will of course do the MRI, but thankfully he still seems quite healthy.

So next on the list of specialists.... none!

In the doctor's waiting room

Well you wouldn't know it from looking at my lack of posts, but my brain is constantly bursting with things I want to write about. Life is busy and good but I'm struggling to find a time to write. If I was one to make New Years resolutions, writing more would be top of my list. But I'd rather not set myself up for failure.

Since I'm months behind on a Sebastian update, I'll just dive right in. We had him evaluated by the school district and he qualified for free assistance. The plan we agreed on with a whole team of people we met with is to send an occupational therapist to his preschool once a month to see if there's anything they can do to help him with his writing. A physical therapist will also see him occasionally to make sure his gross motor skills aren't too far behind. Both therapists have been to the preschool for a visit or two and left us notes. They both saw the things we were concerned about and are doing what they can, which so far doesn't sound like a lot. But hey, you get what you pay for and it's free so I shouldn't complain. As far as regular physical therapy, we're just going to stick with keeping him active. He's still in gymnastics once a week and he's now riding his bike without training wheels! So while he may not be running well, he's doing amazing on his bike! I was several years older than him before I would even try to ride without training wheels, so I think he's going to be just fine on physical development.

We also had an appointment at Shriners Hospital for Children to see if he needed orthotics. They examined him, watched him run and walk, and did an x-ray of the entire bottom half of his body (awesome machine there got it all in one shot). All good news there, his legs are developing fine. With NF1, deformities of the shin bone, called tibial dysplasia, can happen making it look like this. So we were relieved to see he does NOT have this problem. They said one of his feet is a little flat footed, but orthotics won't help that.

Before the appointment Sebastian asked me why he needed to go to the doctor. I told him they were going to look at his legs and see if he needed something to put in his shoes to make it easier to run. He got all excited about the prospect of the doctors helping him "run super fast!" So he was very disappointed when we left without the magic thing in his shoes. I encouraged him by saying this was a very good thing that he didn't need any help, he'd be able to run super fast on his own if he just kept practicing. Inside I cringed at my own words though. Maybe he'll never be able to run super fast, or maybe he will. I never know what to say but I feel that encouraging him to keep trying is always the right thing. He has to learn to never give up.

Up next for super Sebastian is the long awaited appointment with a pediatric neurologist at the Providence Neurodevelopment Center. We'll see what kind of doctor books out 6+ months in advance. I'm hoping for Hermione Grainger.

...keeping in mind Sebastian is not even 5 yet....

• Eat your pizza so you can have ice cream.
• Quit eating your boogers.
• Your friends won't like you if you don't wipe your nose.
• It's only ok to call babies fat.
• Quit yelling at strangers and eat your food.
• You don't need to tell me every time you fart. Especially in public.
• Don't lick me.
• Get your hands out of your mouth.
• Get your hands out of your pants. If you want to play with yourself, go to your room.
• It doesn't matter how big your penis is. Quit talking about your penis.
• If you eat vegetables, your penis will get bigger. (That was all Brian)
• Don't talk about your penis, farts, poop, or boogers in front of girls. Remember Mommy is a girl.
• No we can't pee at the same time.
• You can only pee on a tree when you're camping. You cannot do that at the park. Pull your pants up.
• You have to put pants on if you want to go outside.
• Quit sticking your naked butt in the air.
• Quit slapping my butt.
• Quit touching my boobs.
• You shouldn't say fuck, you'll get in trouble at preschool
• Which one of your girlfriends did you play with today?
• Do your girlfriends kiss you on the mouth?
• No you can't play video games and watch TV all day.

And the worst one, the one I swore I'd never say to my kids, but have now said at least a dozen times because I can't think of an answer to his million whys...
Because I said so.

This makes it sound like he's a monster but these are things that are not said every day...mostly. I'd like to assume some of the more perverted things he says and does are not JUST because he's a boy... right? Someone with a daughter help me out here.

I am long overdue on a post about  Sebastian's NF1 (if you don't know what that is, you can read my other posts about it). After his eye exam last spring, we took a break from doctors. We decided there was no need until he started showing other symptoms. Sadly that time has come. Left on our list of doctors to try is just the neurodevelopment center. I was unable to get ahold of them when we first found out about this (almost 2 years ago... holy crap I don't believe it's been that long). We finally got a return call when we tried this time and we were able to get him appointments for physical therapy, and a pediatric neurologist, which isn't until March of next year! A doctor booking out that far...what is he, a magician? I'm betting he'll just charge us an insane amount of money to tell us what we've already heard. Nonetheless, I'd like to cover all our options and make sure Sebastian is getting all the care he needs.

At this point, it is hard to tell exactly what problems he is having from this disorder. Many of the things on the lists of complications from NF1 (things like ADD, socialization problems, balance and coordination, etc.) are things that can easily be explained away by his age. Most 4 year olds can't concentrate on one task for long, fall sometimes, or say awkward things in public. How are we supposed to know when it's from NF1? I think the answer is, we don't. We guess and hope we're right.

At this point, we do think it is delaying his physical development a bit. Most obvious is running, jumping, and writing. He seems to have muscle weakness and coordination issues. Brian took him to his first physical therapy appointment last month. It went well and he thinks it will really help Sebastian's physical development issues. The therapist said keeping him active like we're doing is the best thing we can do. It was reassuring to hear that we were on the right track to helping him. We hope to get him into regular physical therapy, but are trying to figure out how to afford it (one visit cost us $330!). Interesting that you can get an entire bottle of narcotics for $10 but something that's actually good for you costs hundreds of dollars. And by interesting I mean fucked up.

The other issue that is affecting Sebastian is writing. He is very intelligent (biased I know, but true). He knows all his letters and numbers, the sounds each letter makes, and is even learning how to sound out words and basic math. But he lacks the muscle strength to write. He can write ok with markers or draw on a touch screen, but using a pencil or crayon is very difficult for him. He gets tired quickly and quite upset if we make him practice for long. I think part of that is because his muscles really do hurt or tire quickly and the other part is that they have him practice so much at preschool that he's sick of it.

He's starting to notice that some things are a lot more difficult for him then they are for other kids his age. We're being honest and telling him that yes, he will have to work harder than most for certain things. His preschool teacher said he told her "I'm trying very hard!", as if he was concerned she thought he wasn't. She knows he is and is well aware that he just wants to keep up with all the other kids. I gave her some information about his disorder the other day so maybe that will help. We put off doing so until there was an issue because we didn't want him getting treated differently unless it was necessary.  She was thankful for the info. We're very grateful he has a teacher that cares enough about her students to learn about his disorder.

The discussions with his teacher broke my heart a little. Brian and I are guilty of writing him off as lazy sometimes, which means many people throughout his life will likely do the same. We have to constantly stop and remind ourselves that maybe whatever it is, is not laziness but something that is truly more difficult or causing pain or discomfort for him. It's so hard to find the balance between treating him like a normal kid, and treating him like a kid with a neurological disorder. I feel if we constantly use that as an excuse to expect less from him, then he won't try as hard to succeed. But on the flip side of course, it would be unfair to have "normal" expectations on things that are being hindered by this disorder. We're hoping as he gets older, it will be easier to tell what is a true complication and what isn't. In the meantime, our best guesses will have to suffice and we will continue to help him in any way we can.

Well it's been a pretty intense several months! Lots of good and bad things have happened, but they've all been pretty life changing I must say. Here's a visual:

Ran a 10k	Totalled the Neon
Bought an '07 Rav4	Drank too much wine
Sebastian's Eye Exam	Got to see the gummy bear
Turned Brian into a Mermaid (oh and he chopped off his hair for the first time in 10 years)

Sebastian's eye exam went well. The doctor didn't see any problems. They want us to re-check every year but it sounded like kind of a waste of time. The doc admitted that it's hard to see an optic glioma with just an eye exam. Sounds like just checking his vision on a regular basis would show just as much. So far we're not concerned at all. This child sees everything!

It was rough to go from running 6.5 miles to being injured and not being able to exercise for over a month. Then after a few weeks of slowly starting to get back in shape, the morning sickness (all day sickness really) kicked in and I spent the next two months hanging over the toilet or sitting on the couch. I even had to cut back my hours at work to part-time for awhile. Now that the sickness is gone, I'm trying to get back into shape again, but other pregnancy side affects make it slow going. So much for "every pregnancy is different." Liars. It's worth it though, I really am very excited.

Believe it or not, there was good that came out of the accident as well. It really put things in perspective for me. Since getting Sebastian's results, I had that nagging worry I couldn't quite get rid of. But the accident managed to push that completely out of my mind. You know why? Because we could've died! That's right, one second you're just driving down the road, minding the rules of the road, and the next, some stupid dingbat has decided to just turn left across traffic even though there's cars in the freaking intersection. The whole thing happened so fast. It just made me realize how quickly our lives could've ended.

It's just not worth spending your life stressing out. Apparently the accident, and maybe the vicodin and nightly large glasses of wine, relaxed me enough that I finally got pregnant after trying for quite awhile. It still surprised me though. You'd think the stress of all that would've kept it away, but there's no beating evolution- those on drugs and alcohol always get pregnant easier. Well it's true, look around! Idiocracy baby, it's happening every day.

The geneticist sent a follow-up letter about Sebastian's results with a little more information. I think it was intended to be a review of what we'd discussed in his appointment. But a piece of information jumped out at me and caught me off guard. It said that most people with NF1 develop neurofibromas, or tumors on the nerve sheath. I had been holding onto the statistic that only 15% of patients develop tumors so this didn't sound right. Did I totally misunderstand what they said? Was Sebastian going to get tumors? I called the genetic counselor to ask about it.

The geneticist did say a 15% statistic, but what I misunderstood was what tumors she was talking about. It applies to the optic glioma, or tumors on the optic nerve, which is what the eye exam will be looking for. During this phone call I remembered the discussion in the office, we were discussing brain tumors specifically, and she said these are usually the only kind that arise in NF1 patients and they are rare. So while this is good news still, the bad news is that most people with NF1 do indeed develop the neurofibromas. They usually start developing around puberty and can continue their whole adult life. They can end up with only a couple or they can have a bunch, there's no way to tell and no way to prevent them. They do not cause any pain or issues, they are not cancerous, and they do not usually need to be removed. It's just a cosmetic issue.

We sigh with relief when we hear something like "just a cosmetic issue". But when you think about what that means for your teenage years then there is no sigh of relief but instead a knot forms in your stomach. When my child's a teenager he might end up with tumors all over his body? Ok well maybe we can hide most of them with clothes. What about sports and gym class? Kids (and adults) can be mean, there's no argument there. I cringe to think about what could happen to him. What about when he's an adult? Even as adults, most of us are self conscious over minor things, fat, stretch marks, cellulite, freckles, moles, zits, imagined blemishes of nothing. Imagine having something like tumors to add to that list and it's hard to picture having a healthy adult relationship. Let alone, even if he finds a decent human being, he'll have to worry about the fact that there's a 50% change he'll pass it on to his kids.

How can I possibly raise him to have enough self-confidence to not let any of this bother him? I have no idea, but I'm sure going to try my hardest. Step 1 is to not think of the worst, because we truly do not know if it will be bad or not. Step 2 is for Brian and I to have as much self-confidence as possible so that he has good examples to watch, because let's face it, "do as I say, not as I do" never really works, no matter how much we wish it did. And Step 3 is of course to continue reminding myself that it could be a lot worse.

The letter also reminded us that they do not think Brian or I have this disorder, but there is still a 1% chance we could pass it on to our children. They say a batch of eggs or sperm could have the mutation, so even though we don't have it, we could still have more kids with it. Is 1% enough to even worry about? I think not.

If you are behind on the latest Sebastian news, I'd recommend reading my previous blogs about the subject, otherwise I imagine this will be confusing.
The First One
The Second One
The Third One

In my impatience to get the results, I called the geneticists office on Friday to see if they had them. I know how things pile up on people's desk, so I figured there was a chance they had it and just hadn't called us yet. And I was right. As we suspected, considering they said there was a 90% chance he had it based on his symptoms, his test showed a change in the NF1 gene, meaning he does indeed have neurofibromatosis.

The genetic counselor was who I talked with and she was of course very reassuring that everything was going to be fine. She pointed out that, had the test been negative, there were other, more serious disorders on the list that they would've needed to test for. So in reality this was a good thing. As much as I felt a twinge of anger at her optimism in that moment, I knew she was right. Things could be much, much worse.

So what's next? An eye exam to verify there are no tumors on the optic nerve. Seems like he'd probably have vision problems if this were the case, which he definitely does not, this child sees everything! But it's better to be sure since some people do not have symptoms. We decided to stick with OHSU (where the geneticist is) for the ophthalmologist since they are all pediatric specialists and even the receptionist knows what NF1 is, so at least we'll have doctors that know what they're looking for and how to look for it on a 3 year old. They said the appointment can take 2-3 hours, because they have to fully dilate his eyes and that can take up to an hour. I can't imagine how to get him to sit still long enough for them to be staring into his eyes for this, but that's why we're sticking with the specialists! But being the better doctors, they were booked until April so his appointment isn't until April 15th. If everything looks good, then we'll be done with doctors and tests for a whole year. Then it'll just be a yearly check-up with the geneticist and the eye exam, to make sure nothing's changed.

I keep reminding myself of the statistics. Only 15% of people with NF1 get tumors, and only a small percentage of them need operations. So there's an 85% chance he'll go through life without any problems from this disorder. It will just be a note in his medical file and the yearly check-ups. It really could be a lot worse.

Last week we got word that the insurance company approved the genetic testing for Sebastian. Of course I imagine at least some of it will end up going towards our deductible, so we'll probably have to pay. But at least they approved it which means if he needs further tests done relating to this after we've met the deductible, then they should be covered, so this was good news indeed! The geneticists office called right away and let us know it was approved and that we could bring Sebastian in anytime for the test.

Last time Sebastian got his blood drawn he was about a year old and daddy took him to do it since I was afraid I'd be a nervous wreck. It was for a large blood panel where they were testing him for a variety of things (thyroid, allergies, blood count, etc.) so they needed several vials of blood. Unfortunately it was at a regular LabCorp location where they did not have much experience on babies. It took them a couple of tries and poor Brian had to hold Sebastian down while he screamed and cried. I was very sad for him and thankful I wasn't there since I would not have handled that well.

This time, I offered to go with them but knew I would definitely be a nervous wreck after hearing those stories, and I'd hate for my fears to make Sebastian scared. So nice, calm Brian bravely offered to take him by himself again. But apparently I had nothing to fear. OHSU has phlembotomists with lots of experience with children so they have this down. Granted Sebastian is 2 years older than last time and they were drawing quite a bit less blood, but still it sounds like they knew what they were doing. They did the blood draw super fast, Sebastian flinched but didn't cry, and then they gave him 2 new books to take home. (Distraction is often a magic cure for small children.) Sebastian has talked about the experience several times with Brian and I without any sadness or fear. He says it hurt but referred to it this morning as "the doctor scratched my arm". I asked him if he cried and he says "nooo" with a giggle like that's a funny idea. What a tough little man we have on our hands. I'm so proud of him.

Results can take about a month. So now we wait...

Last Friday we took Sebastian to his first appointment with a geneticist at OHSU (Oregon Health & Science University). First I have to say that this place is pretty amazing. My first thought when I heard it was a university was oh great. At UNR if you went to the student health clinic, you had to wait all day to see a doctor who was still in training. They'd awkwardly examine you and then say "yeah I'm not sure what's wrong with you." After looking it up and talking to people in the area, I learned that OHSU is nothing close to that, but is actually a very popular research hospital with many of the areas best doctors. It turned out that our experience matched what we heard. It was a very good appointment and we were dazzled by the geneticist and how much she knew about this particular disorder (without reading off any paper like the neurologist had to). They also had a genetic counselor in the room who's main purpose seemed to be to help translate many of the terms the geneticist said that we did not know. They were both very nice ladies who were of course smitten with Sebastian.

The geneticist confirmed that Sebastian meets the criteria for having Neurofibromatosis. With his symptoms, there's a 90% chance he has it. Thankfully that was the worst of the news. The rest was lots of good news.

1. They agreed we need to do the DNA test to be sure. This test will not only test for NF-1 (Neurofibromatosis Type 1), but also SPRED-1 (also called Legius syndrome) which is a condition that has many of the same symptoms, minus the tumor growth. They are discovering more and more people with this one all the time, so here's hoping!
2. They are good at getting insurance companies to cover this test. They are submitting all of the necessary paperwork and we should hear back in about 2 weeks hopefully.
3. They have phlebotomists (people that draw your blood, a.k.a. vampires ;-)) at OHSU that are very good with children and know how to make the blood draw experience not traumatic.
4. Even if his test does come back positive for NF-1, the geneticist does NOT recommend or require regular MRIs unless he develops other symptoms. This is the opposite of the Neurologist who wanted to order his MRI right away. We were very pleased to hear this. First she will recommend an eye exam, where they will be able to see if he has any tumors on his optic nerve (one of the symptoms of the disorder). If they do see something, then he will need to get an MRI. But at least the eye exam will be a lot less invasive (and less expensive) than an MRI.
5. They agreed he is not showing any symptoms of learning disorders or tumors.
6. Of people with NF-1, only about 15% experience tumor growth, and of those people, only a small percentage actually require surgery. So it sounds very likely that he could go his whole life without ever actually having a problem from this disorder.

The only other piece of bad news was, once they do the DNA test, it takes an entire month to get results back. But still, at least we should know something for sure in the next couple of months. In the meantime, we will stay positive and off of google. :-)

Disclaimer: The below post I wrote out of the utter frustration I am currently experiencing with our health care system. I am indeed quite thankful to have access to adequate health care at all, so please do not misinterpret my comments as rude or ungrateful. I do not mean to offend, just to simply get these thoughts out of my head.

There are so many amazing things about being a parent. Doctors are not one of them. When you're pregnant all you wish to hear is that your baby is healthy, and you think once you have a healthy baby, you won't have to worry so much any more. But that's a lie. You will worry forever. Especially if you're like us, and you haven't had a good check-up from your pediatrician since you're kid was 6 months old. First it was he's not growing fast enough. They did every test you could think of, at least that's what I thought at the time. After months of doctors and tests they found nothing and concluded Sebastian was fine, just small for his age. Which is what we told them to begin with, but clearly doctors are the all-knowing gods of the universe and us parents can't possibly know how our own children are doing. After a year and half of staying home with Brian and only going to short preschool classes and no full-time bacteria-infested baby daycares, Sebastian has finally caught back up with the growth chart. So for once, I actually had no fears about his well-check. I even stayed at work and had Brian take him to his 3 year check-up alone. But alas, I was naive.

Instead of hearing the words we all crave to hear, "your child is perfectly healthy", we were confronted with a new vocabulary word. One the pediatrician did not take the time to explain but instead left us with a list of doctors to go see, all of which want referrals and health records, and 2 weeks to 2 months to even return your phone call. No, instead Brian was told "we think Sebastian may have Neurofibromatosis."

Neuro- what did you say? Neurofibromatosis. Google it and you will possibly burst into tears the way I do everytime I think about it too much. Since we were left with no answers, only questions we never thought we'd have, we turned to everyone's favorite research assistant, the Internet. Of course that is not the most accurate and certainly not the most reassuring place to look, but at least we learned what it was and how bad it could be. First on the list of doctors that we could actually get into see was a Neurologist. She confirmed the pediatricians suspicions and said she thinks, according to her check-list that looked like it was printed from the same articles we read online, Sebastian does have neurofibromatosis. The only thing we learned from her was that if he gets a tumor (yep tumor!) then it will be a slow-growing one that won't do much damage for a long time, giving them plenty of time to operate, if necessary. Also that Sebastian is a very intelligent child who is not showing any signs of learning disorders or brain tumors (which are both symptoms). But that she wants to do a brain MRI to make sure. And since a child can't sit still for a 45 minute MRI until he's 9-12 years old, he will have to be under full anesthesia in order to do this.

That was when my world started to really crumble. Everything I thought I understood about what was expected of me as a mother, about how to take care of my child, how to keep my life balanced and happy, all of it has all been ripped out of me and replaced with complete doubt. The kind of doubt you're not sure will ever go away, not with a diagnosis like that. I keep reminding myself that anyone at anytime can grow a tumor for any reason, and there's nothing any of us can do about it, so really, we shouldn't worry at all. And that worrying, of course, does absolutely nothing to help the situation. No matter how much I tell myself those things, it hurts the same amount. If I keep my mind distracted with something else I'm ok. But it's hard not to think about it when I spend a good chunk of time several days a week on the phone with STUPID doctor's office's trying to navigate the maze of complete SHIT that is our health care system. Everything needs a form. No one can do anything without a form, and no one can do anything for 30 fucking days after they get the stupid form. And one place they want us to go is switching to a new electronic system and they are "weeks behind on scheduling" as their message says when you try to call. We called in October and still haven't heard a word. That's a lot of weeks.

Next on the list of doctors we finally navigated successfully into getting an appointment with is a geneticist. There is a $1000 genetic blood test they can do to test for the gene that causes this disorder, and therefore be sure this is what he has. The neurologist made it sound like this isn't really necessary since he meets 2 things on her fancy checklist criteria. His symptoms that meet this by the way, consists of him having more than 6 cafe au lait spots (basically large freckles of which he does have many), and freckles in his groin area (of which he has a couple). The other symptoms on the checklist are things like tumors, freckles in the eyes, lumps on his skin, etc. of which, as far as we know, he has none. The more our good friend Google has told me, the more I feel, despite the outrageous cost (insurance might cover it), that we should do this test to be sure. There are several other things on the list that can cause cafe au lait spots, one of which is "idiopathic" meaning "arising spontaneously or from an obscure or unknown cause", aka there's nothing wrong with him (my favorite option). Maybe I'm being naive again, or just hopelessly optimistic, but I think it would be prudent to make sure he actually has this disorder before we go putting him through a bunch more tests and doctors unnecessarily. I can't help but think the healthcare system is all a giant conspiracy to suck money out of you. Seriously people, this is all over some freckles.

A person with this disorder has a 50% chance of passing it to their kids. 30-50% of people with this disorder develop it spontaneously, and the rest were passed the gene from their parents. Meaning if he has this, there's a good chance that Brian or I have this disorder and are completely unaware of it. In one way I would feel better if one of us had it, because that would mean we've made it this far in life without having any problems, so I would be less concerned about how severe this can be. However, they say the severity can be drastically different from one person to the next, even within a family. And that would also make our decision to keep trying to have another child a difficult one. Do I want to bring another kid into the world that might have health problems his whole life? Do I want to bring, even a healthy child, into our family where we're stressed out and trying to deal with our first child potentially having health problems? It's all a bit overwhelming, so the urge to reproduce has been put on hold until we know more about what's going on with our little man.

Sebastian is still amazingly happy and healthy, despite all this bullshit. Obviously he doesn't quite understand what's going on, and we haven't tried to explain it to him since we don't really know what's going on. But he makes it so much easier to deal with since he continues to be happy no matter what. He can always make me smile through my tears.