Just one of "those" days

Yesterday was one of “those” days.  It wasn't overly dramatic, but it really drove the point home that this life of raising Dylan will be different....will be hard.  When I am alone with Dylan, going through our every day activities, I often forget that he isn't just the same as every other 16-month old.  He is making progress, learning new things daily, and constantly impressing me with his awesome personality.  But those moments where I notice the differences, or where I allow myself to compare him to other kids his age, are coming more frequently lately.  And yesterday was one of those days where I felt like Dylan’s Microcephaly was hanging over me like the dreary, oppressive, rain clouds that just moved in over Portland.

The day started with a physical therapy appointment.  Dylan typically loves physical therapy, and honestly I do to. As tedious as it is to bring him to so many therapy appointments each week, it is at these appointments that I get my hope and encouragement. He has been receiving physical therapy since he was only two months old, and he knows that this is his time to show off.  He always does tricks for the therapists that he will never do for me throughout the week!  His new therapist and I were talking about what comes next, and we agreed that within the next few weeks we will have Dylan fitted for AFO’s (Ankle Foot Orthotics).  These are little braces that he will wear under shoes to help with ankle support.  Honestly, it’s really exciting that he is finally at a developmental place where these AFO’s are appropriate!  In order for them to do Dylan any good, he has to be upright more than he is crawling.  And, that’s right…Dylan is finally starting to be upright!  He’s been pulling up to stand for the past week or so, and every day he gets more comfortable and does it more frequently.  This is SO exciting for me!  I get butterflies in my stomach and a huge smile across my face every time I go to get him from his crib and find him standing, or turn around to find him upright against the couch!  The therapist was so impressed with the progress he had made in just a week.  And I am really excited that we have access to the orthotics, in order to make the transition to Dylan taking his first steps that much easier. But then there is this piece of me that is just dreading putting those little braces on his ankles every day, and having that constant reminder each time I look at him of how much harder life will be for Dylan. 

We went directly from physical therapy to a music class.  Dylan LOVES his music class. Seriously, he comes alive while we are there.  He loves the interaction with other kids his age, loves the opportunity to bang a drum or shake an egg.  It is the highlight of the week for both of us. We have been in this class for 4 or 5 weeks, and I haven’t had a chance to talk with any of the other moms yet about Microcephaly or the fact that Dylan has developmental delays.  Yesterday, after class, Dylan was playing with another kid about his age (who was running and talking and developmentally WAY past where Dylan is).  The boy’s mom was making conversation with me and asked, very politely and un-offensively, if Dylan’s head was “that way because he has that thing where the plates were fused?”  Seriously, she was very sincere in asking, and I was not offended in any way.  I told her that I wish that were the case, because at this point if he could have a surgery to fix the size of his head I would opt for that in a heartbeat!  I explained Microcephaly and Dylan’s delays to her, and she was very sweet.  We went our separate ways, and as I was driving home I realized this was the first time someone had asked about Dylan just based on his appearance.  Kind of a big moment!  And it wasn't nearly as scary or intimidating to talk about as I always imagined it would be.  But it also made me wonder how many hundreds of people have met Dylan and looked at his little flat head with it’s short forehead and wondered…but not had the courage to ask.  And honestly I was so thankful for this lady being willing to be the first!  Just like I talked about a couple weeks ago on Microcephaly awareness day, the more people that know about Dylan’s differences, the easier it becomes for me to raise him in this world where everyone compares everything.

Our third stop for the day was up at Dornbecher Children’s hospital for a swallow study.  I have been putting this off for months, hoping that Dylan’s eating and drinking “problems” would eventually resolve themselves. He has been a wonderfully enthusiastic eater since the day he was born, nursing great from the start and taking to solids like a champ.  To date, I don’t think there is a food that he has rejected.  That said, at 16 months I still have to cut all of his food into tiny little bites (almost as if it’s already been chewed), and drinking out of a straw, sippy cup, or even bottle is a huge mess (more comes out than goes in).  And the drool!  Shirts are soaked within minutes of putting them on.  His speech therapist has assumed all along that this was simply a motor planning issue in his mouth – that he would eventually learn to control the muscles of the tongue, lips, and jaw better in order to eat more efficiently and control the excessive drooling.  During the swallow study we fed him liquids and solids laced with barium and watched his swallow on an x-ray.  We were looking for reflux, liquid creeping into the nasal passages or airways, or other red flags.  I told the nutritionist that I was really hoping we wouldn't find anything concerning, and that she would wonder why the heck we had bothered to come in.  Unfortunately this wasn't the case.  Dylan wasn't aspirating liquids to the point of choking or coughing, but just about every other gulp of liquid he took would sneak behind his epiglottis (that little flap that protects your airway).  She was shocked to hear he didn't have chronic bronchial infections.  He also had enlarged tonsils, which were trapping liquid, and the presence of reflux (which we treated as a baby, but haven’t been treating for the past 8-10 months).  In addition to all of those issues found on the x-ray, I also learned that he has tightening of his lingual frenulum AND his labial frenulum….those little flaps of skin and muscle that connect your tongue to the floor of your mouth and your upper lip to the center of your gums.  Both are tighter than they should be and need to be cut in order to allow him to move food and liquid around in his mouth more efficiently (luckily it is a simple laser procedure).  Sheesh!  There were so many things that came from this short study, and I could barely absorb everything the doc was telling me!  Long story short…visit a specialized ENT to snip the frenulums and evaluate the tonsils, work with the primary care doc to get the reflux back under control, and…the most disturbing for me…give him thickened liquids for the time being in order to prevent the aspiration into the airways.  So, until further notice, I have to mix a solution into everything he drinks in order to make it the consistency of thick nectar or thin honey.  The poor kid can't have a glass of water without this “THICK IT” product in it!  I just can't wrap my brain around how inconvenient that will be.  And, so far, the first 24 hours have been a disaster.  Who wants their milk to be all thick and textured?  Not Dylan, apparently, because more has come out than has gone in.  I’m really hoping we can get the hang of this before he ends up dehydrated!

So…what a day.  I feel like, despite Dylan having Microcephaly, so many days for us are just “normal.”  Not necessarily “normal” for a typical 16-month old kid, I know that it’s not “normal” to have 3-5 therapy appointments a week, and it’s not “normal” that Dylan isn’t saying any words or walking or understanding verbal cues.  But we have developed our own definition of “normal” and for the most part it has been ok.  And then we have a day like yesterday, when it became so much more apparent in all these unrelated ways just how far outside of “normal” we are living.  I think this life of raising a kid with special needs is going to be hard! I don’t often admit it and I know it could be a whole lot harder than what I am experiencing, but sometimes I have a tendency to sugar coat and only acknowledge (both publicly and in my own mind) the exciting advancements that Dylan makes.  I have no doubt that there will be days that are much harder than yesterday was, and many many days that are a whole lot more exciting and rewarding, but I think yesterday was just one of "those" days that us mamas raising kiddos with special needs experience from time to time.   

Thanks for listening!    

I'll leave you with a little bit of adorable.  The video is of the first time we found Dylan standing in his crib.  You guys, Jack was more excited than I have ever seen him (I love that kid!),  He heard Dylan talking in his crib after nap, and went in to say hi.  When he saw Dylan standing up, he came running to find me, screaming and yelling "MOM! COME QUICK!!"  (Scared me to death).  Jack immediately grabbed his "camera" and started taking pictures of Dylan.  The pride flowing from that big brother over his little bro's accomplishments is enough to melt this mama into an emotional puddle.  And, as you can tell, Dylan loves the attention of his big brother!

Microcephaly Awareness Day

May 30^th, 2013, sixteen months ago today, I went in for an ultrasound.  I was 39 ½ weeks pregnant.  That afternoon I received the news that would change my life forever.  

I have spent the past 16 months learning about Microcephaly.  First I read every website, medical journal, and blog I could track down that would give me a little insight into what the term “microcephaly” even meant. I was terrified by what I read. I made appointments to see any specialist or doctor that would let me through their doors, hoping and praying that eventually someone would give me the answers I was desperate for. They didn’t. I spent hours staring at this tiny baby that I had made, and wondering what his life would look like, or if I had it in me to give him what he needed. 

What was Microcephaly and what did it mean for my life? For Dylan’s life?

As time went on, I learned that the words I read online or the predictions given by a doctor would never define Dylan, or define our experience with Microcephaly.  I stopped trying so hard to find the golden nugget of information, finally realizing that it had never really existed in the first place.  Because the genetic form of Microcephaly that Dylan was born with is very uncommon, and every one of the few cases I was able to read about was completely different from the last.  I came to the conclusion that Dylan is going to develop into his own unique little person, no matter what Google or Dr. So&So says.  It was a freeing conclusion - because I could stop trying so hard to figure everything out right now - but it also left me feeling powerless and completely in the dark as to what Dylan's future, my future, would hold.

    

And so began an unbelievably lonely sixteen months.  Sixteen months of 2-4 therapy appointments a week, countless visits with various specialist, and a whole team of Dylan’s providers that were continually impressed with his development but had no idea what we should expect next from him.  Sixteen months of knowing that Dylan was loved by so many people, but not really understood by anyone (including myself). There were days when I would cry, wishing I could have just given birth to a baby with Down Syndrome.  If I had accepted the fate of raising a child with special needs, why couldn’t he have a diagnosis that came along with a support group meeting every night of the week and hundreds of thousands of websites with information on what to expect and how to make it all OK.  Microcephaly was a very lonely diagnosis.

And then today happened. 

 And honestly, truly, I feel like I have a whole new understanding of what it means to be supported by a community of people.  And, for all the bad rap that Facebook gets, it sure does make this journey I’m on a whole lot more tolerable. 

For those of you who aren’t connected with me on Facebook, or who might not even understand the significance of September 30^th, let me take a step back and fill you in.  Today is Annual Microcephaly Awareness Day.  The purpose of the day is to simply raise awareness for this neurological disorder, primarily by encouraging people to wear yellow (the symbolic color for Microcephaly) and talk about their experience.  It’s a world-wide push, mostly communicated through Facebook groups.  Two days ago I made a plea to my friends to join me in wearing yellow and spreading the word about Microcephaly.  I expected my family to comply, maybe a friend or two that happened to have a yellow shirt on hand.

But wow.  What happened instead was pretty remarkable. 

My facebook newsfeed was absolutely flooded today with pictures of people wearing yellow.  In addition to the pictures, there were posts where my friends were sharing information about Microcephaly and introducing Dylan to their circle of influence.  Multiple people reported that they were able to strike up conversations about Microcephaly throughout the day, both with coworkers and total strangers.  I brought Microcephaly Awareness treats and an informational card to Jack’s preschool, finally able to break the ice with a new group and tell them about Dylan. I think it is safe to say that hundreds…no, probably thousands of people heard the word “Microcepahly” for the first time today, just because Dylan’s story was shared.  While that might not seem like much…we didn’t raise any money or find a cure or organize a city-wide rally…from my isolated position of raising a child with an unfamiliar diagnosis, it means the world. Because it means that I no longer feel so alone.  The ripple effect has started, and people around me are beginning to understand Microcephaly, as much as it can be understood. And, boy, does it give me encouragement for what we can do together in the future!

I went back today and re-read my blog post from September 30^th 2013.  Dylan was 4 months old.  I was absolutely TERRIFIED of what came next.  I stayed pretty quiet on Microcephaly Awareness day last year. I wrote a little blog post, read by a small handful of people, and felt like I had done all that I had the capacity for at that time.  But I truly believe that Dylan’s story is an important one, like all of the kids living with Microcephaly, and I intend to keep telling it, hopefully louder and louder as time goes on.  Babies are being born with microcephaly every year (every week? every day?), which means that there are new moms and dads being given a diagnosis that they have never heard of before.  New moms and dads staring at a newborn with a tiny misshapen head, wondering how they will ever be enough.  And the truth is…they won’t be enough on their own.  I would never be enough for Dylan without support.  And raising awareness is the first step on a long road.     

Thanks to everyone who talked about Microcephaly today!  Keep talking! Years from now, when I tell Jack and Dylan about this phase of our lives when everything was still so new and overwhelming and intimidating, I look forward to telling them the story of today and all the love that was poured out on us.  And for those of you that weren’t able to wear yellow today…I’m giving you a one year notice!  Mark your calendar for September 30^th 2015.  I wonder what we will do together…?

Here is a little sampling of the love that was shared with us today.  Look at all that Yellow!  Thank you to everyone who was on #teamdylan today.  And I'm sorry if I missed anyone!  There were ALOT of posts to sort through!

Microcephaly Awareness Day cake pops, shared with Jack's preschool Class.
What a great way to open up a conversation with the other parents...because who can say no to a cake pop?!

My crazy, enthusiastic 3 1/2 year old Jack...so excited to bring cake pops to school and wear his new yellow shirt!
He didn't understand the significance of today, but he loves any excuse to celebrate!

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!