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.