Sunday, May 17, 2015

NF Awareness Day

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

Tuesday, April 21, 2015

Specialists Aren't So Special

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

Tuesday, March 24, 2015

Oscar- 15 Months!

You read that right, a 15 month old post update, because the 1 year post I planned on writing is just now taking place, so we'll just pretend like I did that on purpose (just to keep you guessing).

Since my last post about Oscar, around his 6 month birthday, he was well on his way to crawling. He started crawling not long after that post, and then soon after pulling himself to standing, and there he stayed for several months. He could walk holding on to things very well at 10-11 months, but he was too cautious to allow himself to let go. He took his first steps on his own at his birthday party, the day before he turned 1. It was the perfect time since some family and close friends were their to see it. We even caught the second walk on video, which was awesome.


video

In the past 3 months, he has progressed to speed walker/almost running. He loves walking everywhere you'll let him, and especially the places you ask him not to go. He also loves trying to jump, which he already can do on the kid trampoline and the couch. And then there's the dancing.

video


He's starting to say a few words, "dada" and "mama" being the first. And now most clearly is "hot" which is so funny since that was one of Sebastian's first words too. He is also very close on "duck" and "ball" and has many sounds for things that Brian and I recognize as words, but probably not anyone else yet. One day it sounded like he said "more please" when we were trying to teach him the signs for that, but he sadly hasn't repeated it. He has little interest in learning sign language, but we keep pushing the few signs we found most useful with Sebastian, and he's slowly starting to do them.

His favorite things right now are soft blankets, or softies as we've taken to calling them, and books. He's very interested in flipping through books and loves being read to already which is awesome. His favorite book right now is "Farm Animals- A Book About Animals Sounds". He tries to repeat some of them, and sounds like he's kind of growling in some combination of the "woof, woof" and the "quack, quack".

Sebastian and Oscar have started playing more together, usually games like peek-a-boo or some form of tag which is really just chasing each other around screaming and squealing. They also have made a game of spinning in circles and dancing around the room imitating each other. Sebastian has learned how to share very well with his brother, most of the time. Oscar can't wait to be able to do all the things his brother can do of course.

Oscar is a wonderful and incredibly happy toddler. I can see the crazy, scary toddler part coming right around the corner, but for now I'll just enjoy my happy boy.

video

Thursday, January 29, 2015

Super Fast Sebastian

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.

Friday, January 2, 2015

30 Happy Things

Birthdays make most of us reflect on our lives and think about how the time is passing. New Years does the same thing. So when your birthday is on New Years day, I'd say I get a pass on being a sentimental fool for a few days. So in the reflecting I've been doing, I realized a few things. First, 30 sounds so old when you're a kid, seems so far in the future. But it's here so fast and you quickly realize, you have to pay attention, or life is literally going to pass you by. Second, 30 is not old. If you disagree, talk to my 88 year old grandma. And third, I am ridiculously happy with where my life is. Much more happy than I would have ever imagined being. And with a much different life than I imagined for myself. So here are some of those things that make me happy, in no particular order and with as little editing as possible.
  1. The happy "good morning, mommy" from Sebastian every day.
  2. The giant grin on Oscar's face every day when I say "good morning!"
  3. Brian's tossled curls every morning.
  4. A promising career and a job I actually enjoy going to.
  5. A husband who will throw me a surprise party.
  6. Friends who will come to said party, even though they only had a weeks notice. 
  7. Friends with kids who are going through the same things as us on this parenting journey.
  8. Friends without kids who don't mind spending time with our crazy family.
  9. Running.
  10. Yoga.
  11. Biking to work.
  12. Seeing huge trees when I step out my front door.
  13. Rain and all the life it brings.
  14. Cooking and baking for family and friends.
  15. Being able to afford healthy food.
  16. Being challenged daily by my children.
  17. Living with a houseful of boys.
  18. Parents that love being grandparents.
  19. In-laws who I love like a second set of parents.
  20. A husband who does everything for his kids.
  21. Friends that have stayed friends for years and across hundreds of miles.
  22. Family and friends that drive hundreds of miles to come visit.
  23. Burning Man.
  24. Camping.
  25. Hiking with Brian.
  26. Watching the complete happiness of our greyhound Ginger as she sprints.
  27. The Oregon coast.
  28. Learning to love who I am.
  29. Being with the same amazing man since I was 16.
  30. All the amazing sunsets I have seen and have yet to see.


Playa Hermosa, Costa Rica 5/1/2012

Black Rock City, 9/12/2012

Oregon Coast, 9/22/2012

Bald Peak, OR 1/1/2015

UPDATE: I forgot one of the best things ever. Listening to Brian play his music.

Thursday, August 28, 2014

Mouthful of Exhaust


I like riding my bike to work. The only way I'm able to make time to exercise during the week is by using my commute, so riding and running are perfect. Not to mention it saves on gas money and pollution. It's a win-win really. But anyone who's ever ridden in even mild traffic knows that sometimes your ride can suck.

You'll be huffing and puffing up a steep hill and some old piecer or diesel truck comes whizzing by with black smog pouring out of his tailpipe. You quickly switch to trying to breathe out only for fear of getting a mouthful of exhaust. Seriously there are days I wonder if riding in traffic is counter productive. Exercise is supposed to be good for your body but I can't help think I might one day end up with lung cancer from inhaling all these fumes.

A diesel truck hauling ass past always startles me and the gust of wind from it actually makes me swerve. Or maybe that's just from fear while imagining him swerving into my little lane and taking me out.

Getting stuck behind a city bus can suck. Trying to pass the bus while they're at a stop taking up my lane is quite scary since I'm never sure when they're gonna take off. Sometimes the timing is not in my favor and I pass them, only for them to pass me, and then me to catch up to them again at the next stop.

Drivers that like to slowly creep out while waiting to turn make me very nervous as I have no idea what they're gonna do or if they see me. Make eye contact people. That's the only way I know you see me.

There is A LOT of road kill. Squirrels, birds, cats, raccoons, skunks, possums, and completely unidentifiable animals end up smeared all over the road. The saddest to see is definitely cats as you know they probably belonged to someone. I have no sympathy for squirrels however since they seem to be constantly playing chicken.

There is a lot of debris in the bike lane, including the aforementioned road kill. Pine cones, garbage, and broken glass are the most common. Other interesting things I've seen are tree branches, hub caps, underwear, socks, shoes, hair ties, toys, bike locks, and full dirty diapers. Seriously people, use a fucking trash can. It's cleaner here than it was in Reno but still I'm appalled at the crap (literally) people will throw out the window. And smokers, cigarettes are still litter damn it! The planet is not your ashtray.

So if you see a biker riding on the edge of the bike lane and you think, what the hell are they doing? They're more than likely dodging something potentially nasty or dangerous. Road bikes have high pressure tires so we do NOT want to roll over anything if we can help it. Popping a 90psi tire is probably scary as shit and I have no desire to find out how tough my tires are not while flying down a busy road.

I actually had someone honk at me for being in the bike lane at a stop light, because she wanted to turn right. Sorry peeps, the bike lane is for, wait for it..... BIKES! I don't care if you use it to turn right when no one is in it but don't honk at me unless I deserve it.

So please, when you're driving, get in the habit of checking the bike lane. My 15 year old helmet isn't going to save my brain if you hit me going 45. No helmet would. But that reminds me I should get a new one. Anyways as you can see, there are many things that happen on the road that you don't always notice in a car. I really wish every driver would ride their bike in traffic a few times so they understand what it's like, and maybe take better care to watch out for cyclists when they're behind the wheel.

Friday, August 15, 2014

Things I never thought I'd say to my children...

...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.