The 5-foot journey!

OH MY GOSH, YOU GUYS!!!!  I am so excited to finally get to write the post I have been waiting for!  The one with lots of capital letters and tons of EXCLAMATION POINTS ! ! ! ! !  The one I knew was coming eventually, but had no idea when….well, it’s finally time!!!

This afternoon Dylan C-R-A-W-L-E-D!!!  As in, hands-and-knees, forward progress, unassisted, across the floor CRAWLING!!  He went a total of about 5 feet, and then was exhausted and needed a snack and a long cuddle on my lap, even though I was SO excited I kept putting him back on the floor to try again.  And even if it was only 5 feet, it was the most amazing, encouraging, and inspirational journey I have ever had the pleasure of witnessing.  And the cherry on top…I got it on video!!! (link below!)

The past week he has been getting SO close.  He figured out how to get up on hands and knees a couple months ago and has been spending a lot of time hanging out in that position, rocking back and forth, practicing balance and building strength.  For the past few weeks, his top half has been itching to move.  He would get up on hands and knees and lift one hand at a time, focusing so hard on the balance required to remain upright.  But those legs!  As hard as his therapist and I tried to convince his legs to follow along with his arms, they just wouldn't cooperate.  I have spent hours on the floor, kneeling over him, encouraging his legs to move in the reciprocal motion required to crawl.  About a week ago, for the first time ever, he started to ever-so-slightly pull the legs along.  As I hovered above him, moving his legs with his arms as I had done so many times before, I started to feel them quiver.  Seriously, he was trying SO hard, but they just wouldn't do what he wanted them to.  The determination coming from this kid is beyond encouraging…he will not give up!  After that night I knew it was only a matter of time before he was able to coordinate the movement of his arms and legs together.

Sure enough!  Today was the day.   It actually happened in a moment that I was least expecting it.  He is in the habit of taking two pretty good naps per day lately.  Today, he took a really short morning nap in the stroller while I was out running errands, and then came home for a 12:30 occupational therapy appointment (we have a therapist that comes to our house…absolute best thing imaginable for us!). Anyways, Dylan was pretty cranky and sleepy during his appointment, and we didn't get much accomplished.  I put him down for a nap, expecting he would sleep for a long time, and was surprised that he was up fussing and crying about 30 minutes later.  I tried without success to get him back to sleep, and eventually just got him out of his crib.  I sat down on the couch with him and he immediately reached for my baby monitor.  Like a lot of babies, he REALLY likes anything that he isn't supposed to have (cell phones, remote controls, monitor, etc).  I could tell he really wanted it so I decided to take advantage of the moment….and stuck him on the floor with the monitor out of reach.  Well, you know what happened next!  The five-foot journey that will go down in the Ottaway Family history books! 

  

One part of this journey that I have to record here…because I never want to forget it…was Jack’s reaction.  Jack is Dylan’s absolute biggest cheerleader.  He has no idea that Dylan has Microcephaly.  He is clueless that Dylan is delayed in crawling, or that it’s not normal to have therapists come help a baby of Dylan’s age with their “exercises” once or twice a week.  But Jack sees how much we celebrate every tiny milestone that Dylan reaches, and he loves to add his voice to the celebration.  Despite the fact that Dylan has been clapping for over a month, Jack still insists on pointing it out to me every time he sees it.  He is constantly congratulating and encouraging his little brother.  So when Jack woke up from his nap this afternoon I was excited to show him the video right away.  We sat together on the couch and I watched Jack as he watched the video.  His eyes lit up with an excitement that almost rivaled my own.  After he had watched the complete five-foot journey, he turned to me with an ear-to-ear smile and said in the most tender, emotional, raw voice….”he’s crawling?!?!?”  You guys.  It was all I could do to hold it together in that moment.  How is a 3-year old so tuned in to the importance of what had just happened?  Dylan is so incredibly lucky to have Jack on his team. 

And, the one last thing I have to acknowledge is the importance of the rest of you that have joined “Team Dylan.”  Last Thursday, I posted a video on Facebook of Dylan moving across the floor with my assistance.  Within 24 hours it had received 70 likes and 34 comments (quite a bit of activity for a little person like me).  Today, shortly after Dylan crawled on his own, I shared the video on Facebook and within 5 hours the number of comments had already surpassed last week's post , and they’re still coming in!  You guys have no idea what it means to me to hear the words of encouragement and support for little Dylan.  I made a decision a year ago to make our journey TOTALLY public.  To share the raw, emotional details with whoever wanted to listen.  I have never once regretted this decision, but there are times when I wonder if I’m being too open.  And then something like today happens.  And everyone who knows Dylan knows what a HUGE deal it is that he is crawling at 13 months.  Because a year ago we didn’t know if he would ever crawl.  And it means the world to me that you guys are so invested in Dylan and his success.  So, from the bottom of my heart, thank you.  Thank you for cheering!  Thank you for celebrating!  Thank you for the encouragement!  And thank you for taking the time to follow along with Dylan’s story and all the emotional highs and lows that it brings.  He is one lucky kid to have such a supportive team of people surrounding him.   

And now…I guess I should go start the tedious process of BABY PROOFING!  I have a feeling my little inquisitive Dylan is going to keep my hands full once he’s officially on the move! 

For those of you that didn't see this on facebook already...here is a link to Dylan's 5-foot journey!

And, in case you're interested, here is last week's "almost crawling" video.  He's come so far in just a short week!  

Cheers!

This may seem somewhat anticlimactic...but in Dylan's world there is no such thing.  Just check out what my little Dylan was doing tonight...

I know, right!?!  I was so thrilled.  He figured out how to drink out of a straw about a week ago, which was so wonderful because it was the first time he had been able to drink anything besides nursing.  Prior to figuring out the straw, he hated any type of sippy cup or bottle, and would quickly spit out any liquid that hit his tongue.  He still nurses regularly, but I was worried he would start getting dehydrated if he didn't learn to drink water soon.  All it took was the right cup, and he figured out the straw, no problem!  And, in true Dylan form, he gets SO flippin' excited when drinks water now!  Next challenge was teaching him to like milk, which I was hoping he would take to quickly because its a great way to get some good fat and calories into this little guy.  The first few days of trying he was less than impressed, and ended up covered in milk from spitting out any that made it into his mouth.  But this morning...again all it took was the right cup and all of the sudden he LOVED milk!  I'm talking feet kicking, arms flapping up and down, squeals of delight loved it!  The enthusiasm coming from this kid is so contagious!

And tonight, he grabbed the cup between his two little hands, brought it to his mouth like a pro, and gulped down that milk like he had been drinking independently his whole life.  He was in his highchair having a snack while he watched me get dinner ready, and I had left the cup on his tray.  So imagine my surprise to look over and see this!  I have to admit...it made this mama a bit emotional.  He just looked so grown up drinking from a cup all by himself like that.
 

It's all the little things that make me smile with this guy!

Look Mom...no hands!

Cheers!

Happy First Birthday Dylan!

May 31^st 2014.  Dylan hit the big O-N-E year mark!  How is it that my tiny guy is a full year old?  Boy, time does fly by when you’re raising kids!

One year ago I had never heard of Microcephaly.  I had never even considered the possibility of raising a child with special needs.  One year ago I was a completely different person than I am today.

The past year has been a journey, to say the least.  I have learned more and grown more and been stretched more than I ever thought possible.  I know that there are so many years ahead, years that will be much more challenging and also much more rewarding, but to have made it through the first year with a smile on my face seems like a worthy accomplishment to me.  One year ago I had no idea what Dylan would be like by his first birthday.  I didn’t know if he would be struggling with seizures (thank God he is not!), if he would be able to see, if he would be able to sit or hold up his head.  The milestones that are taken so for granted when raising typically developing children were all thrown out the window when Dylan was 3 weeks old and officially diagnosed with Microcephaly.  From that point on, everything that he has accomplished has been a total surprise and a complete blessing.  I’ve said it before, but I hope I never lose sight of the miracles that take place every day as Dylan overcomes the challenges he was born with. 

But May 31^st 2014 was all about celebrating the amazing gift that Dylan is.  We celebrated with our family and a couple of Dylan’s “friend-babies” (a term coined by my cousin’s sweet 2 ½ year old).  It was about the perfect night.  Dylan was his typical joyful & entertaining self, and loved every minute of being the center of attention.  He watched excitedly as the “big kids” played soccer and basketball in the grass.  He sat contently while Jack and his friends opened the presents and showed them to Dylan one by one.  And the highlight of the night was the most enthusiastic cake smash I’ve seen in a long time.  As it turns out, the kid likes cake!

Dylan’s first birthday celebration is a story much better told with pictures than with words, so I will leave you with a LOT of pictures of the cutest one year old around! 

Happy Birthday Sweet Dylan!  Mom and Dad love you more than you will ever know. 

Enjoy!

something to celebrate

Wow...it's been a while!  I think about this little blog daily, and wonder what it is I will end up posting about next.  I know there are a lot of really great people who have fallen in love with our little Dylan, some I've know my whole life and some I've never met.  And I know you're curious what he's been up to lately.  It would be easy for me to just say..."I've been so busy, I haven't had time to write..."  But the truth is, I have been intentionally avoiding my next update.  I just haven't had the motivation, or better yet, the inspiration to write.

Dylan is an amazing little kid.  In less than two weeks he will turn a year (WHAT?!?).  He is constant entertainment and is truly one of the happiest guys I know.  He radiates an incredible glow when he smiles, convincing the world that he is enjoying life to the fullest, and challenging those around him to enjoy life along with him!

But he's almost a year, and he's just not doing a lot of the things people expect from a one year old. 

So I guess the truth as to why I have been avoiding this blog for as long as I have is this:  I have been waiting to announce something...and so far there has been nothing to announce.  

For sure, I thought Dylan would be crawling by now.  His physical therapist predicted a few months ago that he would be on the move by the time he was 11-months old.  I was so encouraged by that prediction!  And even though he works so hard during his physical therapy sessions, weekly with the therapist and daily with me, he just can't quite get the hang of it.  He could very well surprise me and take off tomorrow -- it wouldn't be the first time Dylan surprised me.  But sometimes I watch him and I feel like he is still so far away, and I get really frustrated...and sad.  I knew that Dylan would take extra time to reach milestones that come easily to most babies, and 98% of the time I am so overwhelmed by the joy he brings to my life that I never even pause to consider the delays that are becoming more and more evident...but there are those moments when I see a baby much younger than Dylan scurrying across the floor on his hands and knees to chase after a ball, or looking her mom in the eye and waving.  Those moments I start to dwell on the reality of the challenges Dylan is facing.  I hate myself for comparing him to other kids, but that's human nature, right?  To watch the world around us and see how we fit in by comparing ourselves to our peers.  Unfortunately it is something I know I will struggle with Dylan's whole life.   

Dylan turning a year is surprisingly hard on me.  The one year mark is when kids start learning and doing so many new things.  Developmentally, this is such an amazing period for a typical kid.  When I watch videos of Jack at 9 months old compared to videos at 15 months, I can't believe how much change took place over such a short period.  Up to this point in his life, Dylan has pretty easily hidden his delays behind his huge smile and twinkling blue eyes.  People are so captivated by his personality that they don't notice anything different about him. There will be a day in the future, probably a few years from now, when strangers will see Dylan and likely know immediately that he is a child with special needs.  They don't need to know the nature of his delays, but they will know enough to not ask stupid questions or make assumptions about him that aren't true.  But this transitional period will be a major adjustment as Dylan's challenges start to become more apparent, and our family learns how to respond to questions, how to rid ourselves of the self-consciousness, and how to accept every bit of Dylan for who he is, despite what he is or isn't doing at the moment.  

I feel like the past year was a warm up, where we were given time to let it sink in that Dylan was born with Microcephaly, but from here on out it's going to get real.  Good, bad, or otherwise...it's going to get real.  

In ten days Dylan is turning a year, and he deserves to be celebrated.  As much as Jack deserved to be celebrated when he hit the big one year mark.  As his mom, I have no right to dwell on my own sadness, or insecurities, or fear. In fact, I have a responsibility to move past those feelings and just live in the moment!  On his birthday, Dylan will smash a cake into his little face, and I guarantee that he will have more fun and make a bigger mess than any other one year old I know (I promise, I'll post pictures!).  He will hit new milestones and, one day, I will write a really REALLY excited post on this blog about Dylan's first independent movement.  I know he will crawl soon!  

Experiencing the joy that comes from your kids' accomplishments is about the best part of being a parent.  Jack recently passed the first level of swimming lessons, and I can't express the overwhelming sense of pride I felt when he held that pale blue ribbon up for me to see.  He didn't have a clue what it even meant to pass!  But he knew that he got to ring the bell, and everyone at the pool stopped to cheer, and that the most important part of all was that he had to go home and put his ribbon on the fridge, because his swim instructor said that's where it was supposed to go.  And since we have a non-magnetic stainless steel fridge, that ribbon is scotch-taped with pride, down at three-year-old-eye-level, all crooked and off to one side. As perfect as the little ragamuffin kid that taped it up there.  

I just can't imagine how proud this mama will be when Dylan starts walking, or talking, or passes his first level of swim lessons.  These things will be so much harder for him, but I already know he will accept the challenge with complete determination.  That sparkle in his eyes has me convinced.  

And, I truly can't let myself be discouraged, because Dylan did have a huge week.  He started clapping his hands!  It's so amazing to watch...his brow furrowed in concentration and his eyes locked on his hands, watching them move slowly together, then apart, then back together again, as if he is surprised by the coordination and control he has over them.  And each time, after a few slow claps, he starts to get the hang of it again and a huge smile spreads across his face.  He is every bit as proud of himself as I am of him.  And with each clap we celebrate!  He also started raising his hands above his head in response to the question "How big is Dylan?....SO BIG!"  It's our first little game, and we have probably played two hundred times in the past three days!  Nine months ago Dylan's arms and shoulders were so tight that we spent time every day just trying to stretch them over his head while he resisted, fought, and cried.  Four months ago his physical therapist was thrilled that he was able to reach up for a toy at chest level.  The fact that he is now able to control his arms above his head, and play a back-and-forth response game with me, deserves to be celebrated!

I think the key to raising Dylan is to keep my expectations at his level.  Not low...I will never stop believing in him or challenging him...but at a reasonable level such that I am ready to run to my computer to write a blog update the same day he claps for the first time instead of waiting for him to start crawling.  Tiny progressions for Dylan deserve to be acknowledged! There will be the big updates with lots of capital letters and strings of explanation points, but there should also be more subtle updates.  This blog, whether anyone is reading it or not, is my opportunity to tell Dylan's story.  It's a story that I want to remember in detail, and I write it as much for myself as I do for anyone else.

So thanks for reading (if you made it all the way to the end...sometimes I get started and can't stop!).  Pray with me that Dylan is able to gain control over his body in new ways every day, and that one day soon he is able to start crawling...even walking.  Pray also that, by the grace of God, I can be the mom that Dylan needs me to be.  That I can ditch my insecurities and shortcomings and just spend my time focusing on the amazing gift I was given when Dylan was born to me.  For some reason that I may never understand, I was chosen for Dylan and Dylan was chosen for my family.  I have already learned so much from him, and I know I have barely scratched the surface.  Most of all, right now, I just pray that I continue to celebrate with Dylan...so please join with us for an uncoordinated slow clap and remember to not take for granted how amazing it is for you to clap those hands together! :-)

A hard week.

It's been a hard week.  

If you know me, or have read my blog in the past, you know I do my best to be a positive person.  I enjoy reporting happy news, and try to put a positive spin on things even when it might be tempting to complain or let negativity take over.  So I've been having trouble figuring out how to write this post and keep it light.  There is a big part of me that just wants to scream and swear and throw things, or curl up in a corner and cry.  I've caught myself going down a negative spiral a few times this week, times when I am left with the quiet of my own thoughts. As much as I love Dylan unconditionally and enjoy every second of watching him develop, sometimes I just can't believe that this is my life.  When I think ahead to the challenges that we will face in raising him, and the things that will be so hard for Dylan and for our family, I just don't know how I will possibly be strong enough.  

So why this negativity?  Nothing has changed.  Dylan is still doing amazingly well, and continues to surprise me every day with new things he is learning and especially with his incredible personality (seriously, he is the sweetest 8 1/2 month old I have ever been around!).  But earlier this week we had an appointment with the country's (really the world's) leading expert on Microcephaly.  We have been anxiously awaiting this appointment for months.  Dr. Dobyns is a geneticist, neurologist, and researcher working out of Seattle Children's Hospital.  He has spent his career trying to understand Microcephaly and what causes it.  He is constantly finding new gene mutations that can be linked to this uncommon brain disorder and developing new genetic tests for families in our situation.  And whereas the geneticists and neurologists that we have seen in Portland have only seen a handful of patients with Microcephaly or read about it in their medical journals, Dr. Dobyns has seen kids from all over the country with little heads like Dylan's. 

So Brian and I knew going into this appointment that we could expect to get a more accurate prediction on what Dylan's future development would look like.  We have been warned of the developmental delays that we would likely see, and the potential struggles that Dylan will face, but never has a specialist given us their opinion with any level of confidence. There was always the disclaimer that the range is huge, and we have just been told to wait and see.  But since Dr. Dobyns has seen that range in actual patients through years of research, he was much more equipped to give us an honest and accurate opinion.

Bottom line.  Dylan's head is small.  Really small.  Which means that his brain is also small, about 50% the size of a typical 8 month old's brain.  When people talk about severe Microcephaly, they often refer to the number of standard deviations below average a head is measuring.  If you look at a growth chart, the 2nd percentile line is two standard deviations below average (50th percentile), and the 98th percentile is two standard deviations above.  Dylan's head falls between 5 and 6 standard deviations below.  Statistically speaking, that's really, really, REALLY small.  Dr. Dobyn's told us that kids can have small heads, and may fall within the "microcephaly" umbrella, with a headsize down around the 2nd percentile or -2 standard deviation range, and still have hopes for normal development.  But he assured us that when a kid is in the -5 or -6 SD range, they just don't have the brain capacity for normal development.  

He basically took my positive outlook, that little voice in the back of my head that keeps telling me "they are all wrong...Dylan will be just fine," and squashed it like a bug.  

The hardest part to accept was his actual prediction on development, based on empirical data gathered by watching hundreds of kids with Microcephaly develop through the years of his research.  He told us that most kids with heads in the range of -4 SD or greater do learn to communicate, but that their language peaks around the level of a three to five year old.  But...

Dylan will talk.  

I have been forced to remind myself of that truth a hundred times a day since I heard it on Monday, because I just can't get the statement "his language will peak at the level of a three to five year old" out of my head.  Jack will be three in a month.  He is a GREAT communicator for his age, speaking in full sentences and complete thoughts.  But I can't imagine his language staying at this level indefinitely.  But Dylan will talk.    

Dr. Dobyns also told us that kids with Microcephaly struggle to reach developmental milestones.  They eventually get there, but it takes much longer than typical kids.  He confirmed what the physical therapist at Dornbecher told us a couple months ago, that we shouldn't expect to see Dylan walking before he's two years old.  Dylan's high tone and muscle tightness was a bit of a mystery to Dr. Dobyns, much as it has been to the previous specialists we have seen.  High tone is not typical of a kid with Microcephaly, so Dr. Dobyns expects that Dylan will have an even harder time in developing his gross motor skills than most of the patients he sees.  But...  

Dylan will walk.

Again...the reminder.  It could be so much worse.  So what if we have to wait for it and work a lot harder to get him there, Dylan will eventually have enough control over his muscles to walk on his own.  And that is something we will never, ever take for granted.  

Talking and Walking.  Two of the amazing accomplishments that parents look forward to in raising young children.  Two of the achievements we love bragging to our friends about, two of the milestones that people are constantly asking about when you have kids around Dylan's age.  I'm not going to lie, I'm terrified of Dylan turning a year, or a year and a half, and having strangers in the grocery line ask me those seemingly harmless questions as they make polite conversation.  Right now, I feel like I have the potential to either burst into tears or start screaming and yelling in reaction.  My prayer is that by the time he reaches a year and the questions start coming, I will be prepared to answer with grace and with the confidence that one day Dylan will begin talking and walking.  

Anyways, Dr. Dobyns strongly recommended that we continue to be aggressive with therapy for Dylan.  He reminded us that an infant brain is a highly adaptable thing.  Dylan will never not have Microcephaly, but with a whole lot of support and specialized therapy, he has the potential to overcome some of the challenges he faces and make the most of what he was born with.  We have been seeing a physical therapist once a week since he was just a couple months old.  In addition we are receiving physical therapy through Early Intervention services provided by the state about twice a month.  When Dylan turns a year, we will begin evaluations to determine if he is ready to add both speech therapy and occupational therapy to the mix.  I have a feeling that taking Dylan to therapy appointments is about to become a full time job!

I'm really at a point right now where, emotionally, I'm torn in half.  My "positive outlook" tendency wants to only focus on the present and talk about how well he is doing!  He has made some huge strides in his physical therapy sessions this week!  And, on Monday I was reminded that Dylan will one day walk and talk!  But I can't stop myself from projecting ahead to what his future will actually look like, with the verbal skills of a 5 year old, an awkward gait, and a noticeably small head.  

A couple days ago Brian and I were discussing Dylan's schooling.  From what I understand, huge strides have been made in Oregon Public Schools to integrate higher functioning special needs students into normal classrooms, often with the help of an aide.  So I was reminding Brian that it won't be like when we were kids, and the "special education" classroom was a mysterious community all of its own that rarely interacted with the general student body.  I pointed out that maybe when his classmates were learning to identify states, Dylan would be in the back of the classroom coloring a picture of the United States...and I lost it.  Just the image of my baby, isolated in a world he will never understand or fit into, broke my heart.  I can feel so strong about the idea of raising Dylan, until the moment that I start to envision specifics of what it will actually be like for him to grow up so different.  And my heart breaks.

But Dylan will walk and talk.  And Dylan will LOVE.  And Dylan will smile and laugh and teach us to appreciate every blessing we are given in this life.  Nothing Dr. Dobyns told us can change that.  

So, there you go.  It's been a hard week full of negativity and feeling overwhelmed and hopeless, but I found my positive spin.  I knew I could do it :). 

Dylan will walk and talk and Dylan will be amazing.

Thanks for catching up with us!  Sorry it has been so long since I've updated.  I have a lot more to report on our appointment last Monday, specifically about a much more extensive genetic testing journey we are about to embark on and some interesting insights that Dr. Dobyn's had on Dylan's MRI and brain malformation, but those will have to wait for another night.  So, for now, Happy Valentines Day!  Kiss your kids and please take the time today to appreciate the simple things in life...Talking, walking, and the ability to love!

And so it begins.

Well...here we go.

This is a post I have avoided writing for a week and a half now.  Yes, I have been super busy (did you read my last post???), and, Yes, I have a thousand excuses I could come up with as to why I haven't taken the time to sit down at the computer in the past week, but the truth is...I just didn't want to put it in writing.  Once it's in writing, it's real. Once it's in writing, I have to start actually processing the truth.

But I've been pretty (overly?) open and honest up to this point, so it's only fair that I continue in that same manner.

This is a post I knew I would write eventually.  I didn't know how soon it would be, or how prepared I would be once the time came.  I'm not sure I would have ever been prepared though.  Because as hard as you try, there is no preparing yourself for the news...

For the first time last week, we were told that Dylan has started to fall behind.

Okay.  I know.  Over-dramatic.  He is only 6 1/2 months old.  There is wiggle room in the scale kids are measured on at this stage in development.  If Dylan was born with a normal-sized head, and if we hadn't done an MRI at his birth to discover that his brain is malformed, no one would have any concern with his development right now.  He is doing A LOT of the things you would expect from a kid his age.  But we found out last week that he's not doing everything you would expect.  In reality, at 6 1/2 months, he's behaving about at the level of a four to five month old.

Last Monday, Dylan was evaluated at Dornbecher Children's Hospital.  He was seen by a Developmental Pediatrician and a Physical Therapist.  Both specialize in kids with neurological disorders, and both came to the same conclusion independently that developmentally Dylan is at a four to five month level.  These were the same specialists that evaluated Dylan about 3 months ago and, after seeing his MRI, were surprised to see him functioning as "normally" as he was.  The post I wrote after that last appointment was so much fun.  I came straight home that night and started typing out the story from the visit, celebrating the news that our little guy was doing so well!  I received so many notes of encouragement after posting that, friends and complete strangers that had been following Dylan's story were rejoicing with us in his accomplishments.  And the truth is, Dylan has progressed a ton since that last evaluation.  He is rolling, eating solid foods, interacting with toys.  In the far back corner of my mind there may have been a tiny little voice whispering that maybe he should be doing more by 6 months, but I was so focused on what he IS doing that I never took the time to think about what he SHOULD be doing.

So when I was told last Monday that he's 2 months behind where he should be, I'll be honest....I was sad. Sad that the reality of what we were told when Dylan was first diagnosed as having Microcephaly was finally starting to materialize.  Sad that I may have to face the truth sooner rather than later that my kid is different, and will start to be more and more different as time passes.  Sad that things are already starting to be harder for him than for other kids his age...things like sitting up on his own, rolling over (he still only goes over his left shoulder), and crawling.  We had a very honest conversation with the Physical Therapist at Dornbecher, and his best guess after his evaluation was that Dylan would be walking around his second birthday.  I know that Dylan is going to continue to do things on his own schedule and nothing a physical therapist says after an hour-long evaluation is going to stop him from walking when he's 14 months old.  But I also know that it's time to prepare myself for the reality that my little guy will struggle to overcome the challenges of his high muscle tone, and may continue to fall further away from the development curve as time passes.

One day in the future I will be used to it.  I will have a really comfortable and honest answer to give people when they ask me about Dylan.  Strangers in the grocery store, gawking at the cute little boy, who ask how old he is and innocently follow up with "oh, when did he start crawling?" or "is he walking yet?"  But I think the adjustment period will be hard on me.  As a mom, it is so fun to brag about your kids and their accomplishments.  I'm not going to lie...when Dylan rolled over for the first time at 4 1/2 months, I was on the computer that night blogging about it!  As dumb as it is, our competitive-mom nature comes out when we are talking about our kids.  Now is the time for me to throw out the window any tiny desire to compare Dylan with other kids.  He is who he is and he will do what he does when he does it (That's a mouthful!).  And, forgive me if you will, but I am going to fully utilize my right to BRAG when this kid does accomplish new and exciting things!  Because I need to celebrate!  And I need to keep reminding myself of the simple fact that, based on the results of his MRI, EVERYTHING Dylan does is a miracle worth celebrating!

So, yeah, I said it out loud.  I wrote it down for the world to see (or the tiny population of people that follows along!).  And, you know, it really wasn't that bad.  There will always be a sadness in the back of my mind, as I mourn the "normal" childhood or life that Dylan may or may not get to live, but I'm still so excited to see how this kid is going to change the world!  And, thank God, he doesn't understand when some specialist says he's falling behind.  He's just working extra hard each and every day to sit unassisted, to pick up that cool toy in front of him, to roll towards the mirror on his right instead of always to the left.  He'll get there.  Just wait for it.  He's going to amaze us all!

I am in awe of you

Hey Moms....those of you who have kids that are older than 2 1/2...who have made it through this stage I'm in with a toddler and a newborn...those of you who have kids in grade school or high school or kids that have kids of their own...

I am in awe of you.

Because, from my vantage point, living through the daily grind of raising a toddler and a baby, I'm not entirely sure how ANYONE makes it out the other end.

My kids are amazing.  Both are wonderful sleepers, great eaters, well adjusted, and loving.  They're not violent, they don't scream and hit, and they don't cry uncontrollably for no reason.  I'm pretty sure that, compared to the average kids, they're both pretty dang easy.

But I'm also pretty sure that taking care a 2 1/2 year old and a 6 month old is just never gonna be easy.

If you've seen me the past few months, you may have noticed my hair sticking out every which way or pulled back into a greasy ponytail.  If you've stopped by my house, I'm sure you've seen dishes left in the sink from the night before, or bins of clean, unfolded laundry in the corner of each room.  It's November 20th and I still have Halloween decorations on my mantle (which, by the way, I finally got around to setting out on October 30th).  In the past couple weeks, I've walked out to my car without my shoes on, without my car keys (many times), and without one or the other of the kids.  In short, I'm a mess.

I just don't think there are enough brain cells in my brain or hours in my day to keep up with everything that is required of me right now.  My life can be summed up in one simple word:  chaos.

At 2 1/2, Jack doesn't understand boundaries.  He is pushing every limit imaginable.  If Dylan is playing with a toy, he wants it.  And, not in a "may I please have a turn with that, sweet brother," kind of a way.  No, it's more like "I'm going to rip that out of your hands to prove I'm stronger and more powerful than you."  If he wants milk, he wants me to drop everything I'm doing and get him milk NOW, and he will yell at the top of his lungs at me until I do just that.  He loves interacting with Dylan.  It always starts out innocently enough, with Jack being sweet and gentle and lovingly playing with his brother. I watch for a moment with a smile on my face, soaking in the tender moment between my two sons.  But just when I let my guard down and turn my head, Jack's sweet hug turns into a headlock, resulting in Dylan screaming, me yelling and lunging at Jack from across the room (where I was attempting for the 6th time that day to fold the bin of laundry that I washed a week ago), Jack yelling back at me, Cooper barking like crazy, and Jack sitting in the corner in time out for the count of ten.  And, guess what, laundry's still on the floor.

Poor Dylan never gets a moment of peace with Jack around.  I'm struggling to even find someplace I can set him down where he is safe from big brother's reach.  Just last week, Jack pulled the highchair over on top of himself, with Dylan in it.  Jack got a pretty good-sized goose egg on his head (which, frankly, I think he deserved), and Dylan was left traumatized but uninjured.

My life is frustrating right now.  Its frustrating to never have both hands free at the same time (washing dishes is much slower with a baby on your hip).  To feel like I don't have 15 uninterrupted minutes to accomplish a simple task over the course of a day.  To look around at the chaos that has overtaken my home, the wrinkled shirt I send my husband to work in, and the uninspired, ready-in-15-minutes-or-less dinners that I'm serving and accept that this is our new normal.  But, right now, I don't really see an alternative.

And then I think about you:  Moms who have made it through this battlefield and lived to tell about it.  You are my heros and my inspiration!  You are my hope that there is a light at the end of this two-kids-under-two-and-a-half tunnel!  My mom raised three of us little terrors, and today she always has a clean house and folded laundry!

There will be a day when Dylan will be able to fight back and Jack will learn ways to get attention that don't include yelling at the top of his lungs or terrorizing his baby brother.  There will be a day when I have the time and energy to cook meals that I am proud to serve my family.  And one day I might even coordinate the decorations I have on display with the appropriate holidays!

And now the cliche:  They grow up SO fast.  And, cliche or not, it's so very true.  There isn't a tiny bit of me that would be willing to trade this period of chaos for a clean house.  Because just about the time when Jack is mature enough to understand that getting a glass of milk doesn't require him to yell repetitively at the top of his lungs, he will also be too mature to cuddle up on my lap because he stubbed his toe or laugh hysterically because I made a funny face.  And I can see it in your eyes, all you moms who have been here before.  When you tell me "it goes by so fast," I know that there is a piece of you that would give anything to jump back in time and spend one more day surrounded by the chaos and mess and overwhelmingly unconditional love that comes from a toddler and a newborn.  

So, Moms, whether you're in the midst of raising a toddler or have kids older than me, I think we should all take the time to recognize ourselves for what we accomplish on a daily basis, even if that load of laundry from last week is still sitting wrinkled in the corner or your family is eating quesadillas for the third time this week.  Because, moms, I am in awe of you!  And as I sink exhausted into my pillow each night, I am in awe of myself that I made it through another day.   If this chaos is a part of the life I get to live, with these the two amazing kids and wonderful husband, then I'll take it.  

Ready....Set....

...ROLL!!!

That's right! This week, at just over 4 1/2 months old, little Dylan started rolling from his back to his front!  Right on schedule.  Because, despite all of the doctors' warnings that Dylan will be delayed in reaching his infant milestones, he is determined to keep up with all of the other kids his age. Or beat them to the milestones, as the case may be!

As a comparison, his big brother, Jack, didn't start rolling over until he was about 6 1/2 months old (not that it's a competition, right?)

I've said it before, but because of what we know about Dylan, it is SO encouraging to see him succeeding.  Every new parent is excited when their kid smiles for the first time, starts cooing, laughs at them, or rolls over.  One of the biggest joys of being a parent is watching your children learn and grow, and taking enormous amounts of pride in their tiniest accomplishments.

With Dylan, I feel like that joy and pride is magnified one hundred fold!

I still am amazed every time he latches on and nurses so fervently, because most kids with neurological disorders can't figure out how to accomplish that simple task.  I melt every time he looks right into my eyes and lights up with a smile, because I am given reassurance that he is able to interact socially.  And I am now overflowing with pride each time I see him successfully roll over, because I had no expectation of when he would start developing his gross motor skills.

We have been working with two different physical therapists for the past couple months to address Dylan's Hypertonia (high muscle tone), or stiff and rigid muscles.  One of the habits he has picked up is arching his back really hard.  In order for a baby to roll, he has to be able to pull his legs to his chest and tuck his chin.  Well, Dylan would consistently do the exact opposite, with an arched back and legs locked straight.  For the past week, we have really been working on showing Dylan how to tuck his head and pull his legs up.  Every time he arched, I would correct his position.  Two days ago, something clicked and he was able to make the connection all by himself, and over he went!  Each time I set him down, he initially arches his back in frustration.  Then he will pause - you can almost see the little gears turning in his head - slowly bring his knees up, and over he goes!  I love to see this problem solving from him, and I love to see him begin to control his body in new ways.

Thanks for celebrating this little accomplishment with us!  I know Dylan has a lot of friends and supporters, and it is so much fun to be able to brag about his exciting new tricks with you :).

Have a great weekend!

Genetics Update

What a week!  Between Dylan and myself, I had a total of FIVE doctors appointments in four days, including the surgery yesterday to remove the Melanoma tumor from my leg.  It went well, and surprisingly it does not hurt very bad...yet.  I was awake during the surgery, with just local numbing where the doc was cutting.  I didn't watch (GROSS!), but when she was all done stitching me up, I sat up to take a look.  I was amazed to see a THREE INCH cut across the side of my knee!  It was so much bigger than I was expecting.  When I reacted to how huge it was, the nurse asked if I wanted to see what they removed.  I was curious, so she grabbed the specimen jar and, seriously, the chunk they removed was the size of a ping pong ball!  They weren't going to mess around with accidentally leaving any cancerous tissue behind, and I'm A-OKAY with that.  They sent it off to a lab to confirm that they got it all.  I should hear back early next week, but the doc was pretty confident.  She did re-remind me of how lucky I was to have caught it when I did...the repercussions of missing a malignant melanoma tumor are pretty devastating.

Today's appointment was with Dr. Anadiotis, the geneticist that we first saw back on June 19th.  It was at that appointment, almost four months ago, that we were first told that Dylan had Microcephaly.  Just walking across the sky bridge and into Randall Children's Hospital, where his office is located, brought back a whole host of emotions.  That was one of the hardest hours I've ever had to sit through, and I will never forget how heartbroken I felt as he told us that our baby Dylan would have intellectual disabilities.

When we first met with Dr. Anadiotis, we were still under the impression that Dylan's brain "architecture" was formed properly, which led us to believe he fit into a specific diagnostic category (Primary Autosomal Recessive Microcephaly).  We started the process of genetic testing through the University of Chicago, looking specifically at the genes that could cause this Autosomal Recessive form of Microcephaly.  But on August 7th, when we met with a Pediatric Neurologist and found out that Dylan's brain was actually malformed, that diagnosis was no longer applicable.  We weren't at all surprised when that first round of genetic tests came back negative.  He still has Microcephaly (which basically means a really small head), but we don't yet know what caused it or what it will mean for his future.  We had hoped that Dr. A. could help us determine other things we could test for, looking specifically at disorders that follow the pattern that we are seeing in Dylan.

It was a bit disappointing when he, like so many specialists before him, shrugged his shoulders and told us he had no idea what could have caused Dylan's head and brain to grow the way they did, or what we can expect in the way of future development.

So, our next step is to see the infamous Dr. Dobyns at Seattle Children's Hospital.  Dr. Dobyns is both a medical geneticist and a pediatric neurologist, and he's the WORLD expert on Microcephaly.  I have seen his name come up so many times in the reading I have done on Microcephaly.  Throughout his career he has worked all over the country, so we are very lucky that for the past couple years he has been at Seattle Children's, just a few hours north of us.  We sent all of Dylan's medical records along with his MRI up to Seattle Children's Hospital about a month ago, in hopes that we could get in to see him.  He is booked through the end of the year and they have not yet released his 2014 calendar.  Everything that I have heard about this guy is that he is VERY hard to get into, but I am persistently calling up there at least once a week to make sure that we are able to get something scheduled as soon as his calendar opens up.

One thing that has struck me through this process is how my view of a "specialist" has changed.  Five months ago, I couldn't have imagined EVER stepping foot into the office of a pediatric neurologist, geneticist, or even physical therapist.  Now, these highly trained professionals are not specialized enough for us!  Its hard for me to believe that I have a child with a condition SO RARE that we are seeking the help of the WORLD expert!  The geneticist today told us that he thought Dr. Dobyns would be willing to see Dylan, because his case would be "different than most of the cases that he sees, and therefore interesting to him."  So our little sweet Dylan, who seems to me to be a totally normal 4 1/2 month old, has something going on with his development that is rare enough that the world expert in a super rare disorder would be intrigued by him.  That's just hard to wrap my brain around.

Sometimes this whole "quest to find the cause" seems a bit futile, and I ask myself if it's worth all the effort we are putting in.  I really do believe, at this point in our journey, that it IS worth it.  There are so many reasons, both for Dylan's sake and for the sake of our family, that I want to know....but that's a WHOLE different blog post!

Thanks for your prayers yesterday as I had my surgery, and as I recover (hopefully without being kicked in the knee by a rambunctious toddler anytime soon!).  And thanks for being on this journey with us.  I will never be able to express how meaningful each and every comment, email, and heartfelt message is to me.  Just knowing that I have you all as a support system, to cry with us, pray with us, and celebrate with us, makes this crazy life I'm living feel a bit more manageable.

Prayers...please...

Over the past few months, since I began to tell our story, I have experienced an overwhelming amount of love and support.  You guys who have followed along know that the past few months have been really hard on my family.  We have been dealing with some pretty heavy things and trying really hard to stay positive, lean on each other, and accept that somehow this is all part of God's greater plan for our lives.

Many times I've said, "It can only get better from here."  I wish that were true.  

On Thursday I received some news that knocked the wind out of me yet again.  Since I have opened up my life through this blog, it only seemed fair that I share the latest with you too, so that you can join with us one more time in prayer.  

A week ago I had a weird looking dark spot on my knee biopsied.  It turns out it was Malignant Melanoma. 

I am 33 years old.  I have two tiny children that my world revolves around.  There is NOTHING more terrifying to me than the idea that something could prevent me from being 100% present in their lives.  So you can imagine how finding out that I have skin cancer might have hit me like a truck. 

The good news is, we found it early.  It is still stage 1, which means that it was localized to this one spot on my knee and hasn't spread to other areas of my body.  Thank God for that.  On Wednesday I am going in for a procedure to remove a margin of tissue in the surrounding area just to confirm that it is all clear.  I will also be going to the dermatologist every three months for the next few years to have a complete scan and make sure I don't have any new or suspicious spots pop up.  

No chemo.  No radiation.  Hopefully 1-2 hours in the surgical office and I will be cancer free.  

It is easy for me to say "it was only one small spot," and "we found it early...no big deal."  That's more my style, to just push this out of my mind and act like it's not bothering me.  But the truth is, hearing that you have cancer, any type of cancer, no matter how small or insignificant, is pretty scary.  I will always wonder if and when it will come back.  I will always know that cancer has lived in my body, and therefore I am at a higher risk for additional Melanoma showing up in the future.  As hard as I try to focus on the fact that this was just one small spot, the worst case scenario keeps finding its way into my thoughts.  And then there are the What Ifs? that keep swirling around in my head.  What if I hadn't gone to get it looked at when I did? What if it actually has spread into my lymph nodes or other parts of my body?  What if something slips past the doc during the procedure on Wednesday and he doesn't remove all of the cancer cells?  The potential is.....well, I'm not prepared to think about the potential.

Life is full of hills and valleys.  My dad was famous for reminding my sisters and me of this throughout our childhood.  Whenever we would come on a hard time, or feel like we were stuck in a dark valley, he would lovingly encourage us to wait it out.  Before much longer we would be up on the top of a hill, likely with a beautiful view of where we had come from.  I've gotta admit, this valley I'm stuck in seems deep and scary and really hard to navigate right now.  But sometime soon I will find my way to the top of the mountain.  The journey will be hard, I know that I have a long climb ahead of me, but when I make it to the top I will be able to look back and see all of the lessons that I was meant to learn along the way.  

I find myself wanting to get so angry sometimes....WHY ME, GOD?  What did I do to deserve all of this right now?  What reason could there possibly be for putting my family through so much chaos in such a short period?  Isn't there a much easier, less painful way to teach us these all-important lessons?  But every time I let myself go there, the answer that pops into my head is "why not me?"  What guarantee did I ever have of a perfect life?  A true test of character is how a person reacts in the midst of adversity, and I hope to pass this test by the grace of God.  I said before, God has never promised to give us a perfect and easy life, but he has promised to walk with us through the life he gives us.  And this is the life I was given, complete with many, many hills and valleys. 

So please pray with us.  Pray that the surgery on Wednesday is routine and successful, that all of the cancer cells are easily removed.  Pray that this is the last time my family has to worry about the ugly "C" word.  And pray that my recovery is easy and painless (and that an overly rambunctious 2-year old doesn't jump up on my lap when I'm not looking!)

I'll leave you with a couple pictures of our angels...because just looking at these two handsome men is enough to make any bad day feel so much better!