Yellow!

September 30th...Happy Microcephaly Awareness Day!  The Ottaway Family is wearing yellow today.  Are you?

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!