The Ottaway Family | A Blog About Microcephaly

Resolutions....and steps in the right direction!

2015-01-25T23:55:00.000-08:00

We had a few of our good friends over for New Year’s Eve this year. As the six of us were sitting around the dinner table, someone asked about resolutions. Usually I’m not a huge fan of New Year’s Resolutions…I figure if you need to make a change in your life, why put it off until January 1^st? (I also pretty consistently bomb on my resolutions by the 2^nd or 3^rd week of January, so it sort of feels like I’m setting myself up for failure). Anyways, this year I had actually thought about it in advance, and I had two great resolutions that I was genuinely excited about.

Resolution # 1: Laundry.

Folding laundry is about my least favorite thing in the world to do. The result is a lot of clean laundry that doesn't ever find its way home to the dresser or closet. I decided starting January 1^st I was going to FOLD each load as it came out of the dryer! (PLEASE do NOT ask my husband how I am doing with this resolution. Remember…I hate resolutions).

And, Resolution #2: BLOG!

Honestly, you guys, writing this blog has been the most amazing experience for me. The people that have followed along and encouraged my family as we ride this roller-coaster are incredible. I feel so unbelievably supported by this community that Dylan and our family have here. But even more importantly, when I write this blog, I process. I have never been someone to journal or spend time writing for pleasure. But when I sat down at my computer just a few weeks after Dylan was born, and tried to figure out how to talk about it…something amazing happened. I wrote that first blog post from the depths of my soul. It was a crazy, emotional, tearful, chills-up-the-spine afternoon. When I finished writing, I read what was on the screen and it felt like a ton of bricks had been lifted off my weary, broken shoulders. I can’t say enough how uplifting this process of blogging has been. So why haven’t I been back in over 3 months??? I could say I've been busy (that’s the super easy, super lame excuse). But I think in all honesty, I have been enjoying my sweet Dylan and our little day-to-day life…pretending everything is good and normal…and when I come to this blog and write and process with you guys, the reality of it all becomes so much more real. The part of me that loves to ignore the hard truth (and the 4 loads of clean laundry in the corner of my bedroom!!) has avoided coming back. But…alas…it is now January 25^th and I am DETERMINED to keep my resolutions this year!!

So……..where did we leave off? Dylan has made more progress in the past few months than ever before! I have so many amazing things to share. The most notable achievement, and most absolutely heartwarming, is that he is starting to walk!! When we began to learn about Microcephaly and the challenges that Dylan would face, I remember so clearly wondering if this day would ever come. We live in a house with lots of open space and hardwoods throughout….and I tried to convince myself that it would be ok if he was confined to a wheelchair. We could make it work. But I held so tightly to the prediction made by Dr. Dobyns at Seattle Children’s Hospital when we visited him a year ago...he said Dylan would walk. Sometimes I would watch him moving and it just seemed so hard, so far from that next step of taking actual steps. Last September he started pulling to stand. The first time it happened was up against a toilet. I was getting ready after having taken a shower, Dylan was in the bathroom hanging out with me. I had my back turned to him, and when I glanced over my shoulder there he was, standing up against the toilet…watching his binky float around in the big bowl of water. In that split second I was both totally grossed out and absolutely amazed by what had just happened. In the next couple of months, he got more and more efficient with pulling to stand. It was SO hard for him, but he was motivated. By mid-December he had become totally comfortable being up in a standing position…as long as he was leaning on something or felt completely secure with whatever he was holding on to. He wouldn't cruise along furniture, walk behind a push toy, or even stand up holding on to your hands, because that would make him feel too unsteady. He wanted to feel the security of something solid up against his belly (because he has very low muscle tone through his core, his back and trunk weren't able to hold him up on their own). So when his physical therapist decided to see how Dylan would handle being upright in a walker at that mid-December appointment, neither one of us had very high expectations for what he would do. But as has been the case so many times before…Dylan totally surprised us by taking independent steps in the walker that day! I couldn't even contain my excitement. I walked out of that appointment and burst into tears, thinking about what I had just witnessed. It took a ton of assistance and it wasn't pretty, but for the first time, DYLAN HAD WALKED!!!

A couple weeks later, his therapist loaned us the walker to take home. Dylan now had the ability to practice his walking every day, not just during his therapy appointments. The first couple days were amazing. We brought the walker home on December 23^rd, and my dream of Dylan walking out to the tree on Christmas morning came true! That was the absolute best gift I could have been given this year. He showed off that day for family, and seemed to love his new trick. That is, until the day after Christmas, when he decided he was over this whole walking thing, and went back to exclusively crawling. I’m not going to lie and say I wasn't disappointed. I thought we were on our way to independent walking, but Dylan had other ideas. I would stand him up in the walker, he would immediately drop down to his knees. Over and over, day after day. His will was strong, and he was NOT going to walk! So I waited patiently, and kept giving him the opportunity to try. His PT encouraged me to just give him time, assuming that he probably had sore muscles from overusing them the first few days that we had the walker (muscles that had never been used before). So a week or so ago, when he started walking AGAIN, and kept walking, I was SO happy! This time it’s for real. He still tires easily, but he is so proud of himself and he wants to keep trying. He got pretty good at doing laps around our living room and family room, so now we have started taking the walker out and about through our daily routine. He has walked in to pick up Jack from preschool, walked in to his music class, even walked from the parking lot all the way into the physical therapy clinic in the back corner of the hospital. And, most impressive of all, this past weekend the sun made a rare January appearance and Dylan walked almost the entire way to the park, two whole blocks! (It was a long trek home for this mom…carrying both Dylan AND the walker…but worth it for the experience of letting him walk there by himself).

I think Dylan has a long way to go before he is able to move around without the assistance of the walker. He has very low tone through his trunk, so it is nearly impossible for him to hold himself upright without something to support him. He also has a lot of trouble controlling the position of his feet, especially the left one (it turns in quite a bit, and he often trips on it or steps on it with his right foot). His therapist believes both issues are fixable with increased muscle control and practice, practice, practice, but it’s going to be a lot of work for the little guy. His ankle orthotics are helping a ton, along with other therapy tips and tools (thank GOD for wonderful physical therapists that know a lot more than I do about how to teach a kid to walk!!) Dylan will be 20 months old in just a few days. And, despite the vague and depressing predictions we were given when he was born, I am beyond thrilled with where he is today. And who knows….maybe Dylan will be walking around independently at his 2^nd birthday party?!? A mama can dream, right?

I have so many other things to tell you guys about! Great things, new ways that Dylan is engaging with the world and displaying his personality! And some hard things…moments when I feel so tired and overwhelmed with what is coming (please, if you see me anytime soon, tell me to stop thinking about when Dylan goes to school…no good can come of stressing out about it now!). And I can’t wait to tell you about a really exciting gift we were given that deserves a blog post all of its own! So I've made it public (25 days late!), that I am committed to continue blogging. If you haven’t heard from me for a while, check in! Most likely I need to write a blog post more for myself and the need to process than for any other reason. Feel free to keep me accountable to that.

I will leave you with a couple videos. If we are Facebook friends, you have probably already seen some of these. But they are worth sharing for those of you who haven’t had the pleasure of watching! I have probably watched each of these 100 times already, and will need to watch them 100 more times before I believe they actually happened! What an amazing kid!

Dylan walking for the first time at his physical therapy appt in Mid. December

Merry Christmas!!

Walking to the park!

Just one of "those" days

2014-10-15T23:28:00.003-07:00

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

2014-10-01T00:34:00.001-07:00

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!

2014-09-30T10:52:00.000-07:00

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

The 5-foot journey!

2014-06-25T23:28:00.000-07:00

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!

2014-06-09T22:37:00.002-07:00

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!

2014-06-04T22:22:00.001-07:00

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

2014-05-21T01:04:00.003-07:00

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.

2014-02-13T21:55:00.000-08:00

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.

2013-12-19T00:11:00.001-08:00

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

2013-11-20T23:35:00.000-08:00

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....

2013-10-26T21:30:00.004-07:00

...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

2013-10-10T22:49:00.000-07:00

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...

2013-10-06T23:20:00.002-07:00

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!

Awareness

2013-09-30T22:57:00.000-07:00

Today, September 30th, is National Microcephaly Awareness Day.

One year ago today, September 30th 2012, I was completely unaware that Microcephaly even existed. I was unaware of the thousands of families that are affected by Microcephaly. I was unaware of the many children living with Microcephaly and the challenges that they face every day.

One year ago today, September 30th 2012, I found out I was pregnant.

What a difference a year makes!

The past twelve months have been...challenging, amazing, emotional, dramatic, influential, challenging (did I already say that?), heartbreaking, wonderful...and memorable. I don't believe we have ever had a 12-month period in which SO MUCH has changed. We found out we were pregnant with our second kiddo, bought a house, celebrated Jack's 2nd birthday, sold a house, moved (when I was 7 1/2 months pregnant!), welcomed Dylan into our family...and after all that, experienced a VERY stressful four months! I would never change a thing about my life and I am beyond thankful for everything I have been blessed with, but it has been challenging, to say the least!

So today, Microcephaly Awareness Day, really got me thinking about everything that has happened in the past 365 days, since those two little pink lines showed up on the pregnancy test that changed my life forever.

At the risk of sounding selfish and insensitive, I never wanted to be as "aware" of a disorder such as Microcephaly as I am today. I never dreamed that I would have the need to learn this much about something as uncommon as Microcephaly. I never imagined that one of those "it will never happen to me" scenarios would play out in my family like it has.

But in our present situation, we can only make the best of of our blessings and challenges. And, as hard and emotional as it has been, we have no choice but to be very, dramatically, emotionally, and 100% AWARE of Microcephaly. And, friends, if you are following along with our journey, you too have become aware of something that, most likely, you never knew existed before you met Dylan.

So, if nothing else, today you know that Microcephaly exists. The word "Microcephaly" simply means "Small Head." In many cases, the cause of the small head size is unexplained. It can be genetic, due to an injury or virus during pregnancy, primary (present at birth), secondary, or associated with a more complex syndrome. It typically is associated with developmental delays, but the severity of the delays is all over the board. The cause for Dylan's Microcephaly is still unknown.

I am so new to this world, and while I would love to spend each and every September 30th from this day forward raising awareness for Microcephaly, I admit that this year I mostly just sat back and observed. I dressed Dylan in yellow (the color symbolic to Microcephaly Awareness), posted his picture on the Foundation For Children with Microcephaly Facebook page, and went on with my day as if it were any other day. But the truth is, my life has been changed by a diagnosis and today it is my responsibility to make my circle of influence more aware of what Microcephaly is.

So join my family in being aware of Microcephaly today, if nothing else. One day down the road, maybe we will be more involved in research, fundraising, or awareness campaigns, but today please just be aware with us. Remember Dylan and all of the other sweet angels with huge hearts and tiny heads in your prayers tonight. And mark your calendar for Microcephaly Awareness Day next year, September 30th 2014...I can't wait to see what exciting and challenging changes the next 365 days brings to my life!

Dylan all dressed in Yellow for Microcephaly Awareness Day, 2013!

I will be okay.

2013-09-21T23:36:00.001-07:00

Lately I've been thinking a lot about our future. I soon will be a card-carrying member of "The Society of Parents with Special Needs Children." (*no...that's not really a thing...at least not that I’m aware of...). I have no idea how to exist within this Society, and I am paralyzed by the fear of saying or doing the wrong thing out of ignorance. I don't know how long I can politely and curiously watch a special needs child in public before I am being rude or insensitive, and I sure don't know the terminology that is considered "politically correct" these days. I want so desperately to communicate with this new group of people that I’m suddenly linked to. I find myself drawn to children with special needs whenever I see them. I want to throw my arms around them, to see their precious smiles and the way their faces light up at the simple things in life. But most of all I want to talk to their parents and hear their stories. To know the struggles and triumphs they have had on their journey. I want to know what their child's diagnosis is, and how different their current life is from the one their doctors told them about in the beginning. I want to learn the secret handshake in order to fit gracefully and seamlessly into their world.

But, in all honesty, I am terrified of stepping through the door and introducing myself.

Over the past three months, I have stood on the edges so many times and tried to talk myself into starting up a conversation with a parent of a special needs child. At the grocery store, at the zoo, at the pool, I feel like I keep coming upon opportunities to say something...and each time I silently walk away, disappointed in myself.

Which is why, yesterday when I saw a little girl with obvious developmental delays and a very small head, I knew I had to step out of my comfort zone and speak up.

I was standing in the membership line at OMSI when this sweet girl, who looked to be about 4 years old, came running up with a huge smile on her face. She was immediately drawn to Dylan, who was sound asleep in my front pack, and although she didn't appear to be verbal she was pointing at him excitedly. Next she saw Jack and ran up to give him a hug, and the woman chaperoning her kindly reminded her that she needs to keep her hands to herself. She was so sweet, and I spent the next couple minutes saying hello and letting her peek at sleeping Dylan.

I wanted to approach the woman with her, and to ask if maybe this little girl had microcephaly too, but I was so nervous. The kind of heart-racing-and-butterflies nervous I remember feeling when I talked to a cute boy in high school, knowing that if I didn't come up with an opening line quickly this opportunity would pass me by.

Finally I got up the nerve. “Excuse me…” I said timidly to the woman with the little girl, “…but, by chance, does your daughter have Microcephaly?”

“No…..?”

Oh crap, I shouldn't have asked. I had offended her. I felt the blood rush to my cheeks and turned quickly to leave, muttering a quick “I’m sorry” as I tried to melt into the crowd.

And then I heard another woman, from a few feet away. “Excuse me...what were you asking?” Her tone was very different from the first woman’s. She was kind, gentle. Looking at her, I could see the resemblance and I knew right away that this was the little girl’s mom.

“It’s just…I was wondering what…if maybe she…it kind of looked like…” I hopelessly stumbled over my words, unable to make sense.

With a smile on her face and kindness in her eyes, she told me what her daughter’s diagnosis was, something I had never heard of.

I pointed to Dylan. “He was born with Microcephaly,” I said. Out loud. For the first time to a stranger. My eyes filled up with tears as I quickly thanked her for her time and turned to leave.

And then she said four words to me that I have desperately needed to hear for the past three months. Words that meant so much coming from her, someone who has been through it and is living smack-dab in the middle of this world that I’m about to enter into. She was just a mom, but in that moment she might as well have been the President of the “Parents of Special Needs Kids Club” for all I knew.

“You will be okay.”

I have no idea if she realized how important those words would be to me. She said them so confidently, with a smile on her face and a twinkle in her eye, as if she knew the amazing gift that was waiting for me on the other end. Maybe she was thinking back to a time when her daughter was three months old. When she was terrified of what was ahead. And when someone told her that she would be okay. Or maybe she just knew, with a confidence that can only come from experience, that we would be okay.

I cherish those words from a stranger’s mouth. I hope that I can continue to have a dialogue with parents of special needs children in my community. That, through time, as I learn this secret handshake that I never dreamed I would have a need for, my encounters will be less awkward and emotional for me. And I look forward to a day in the future when I can calm the nerves of a nervous new mom by giving her the gift of reassurance that I was given yesterday.

Because, I know it is true. I will be okay.

dreams

2013-09-01T22:02:00.002-07:00

It’s a really weird thing, accepting the news that your kid is going to grow up with special needs. I've been told many times that I’m adjusting well, handling the news so gracefully. Maybe it's true. I don't mope around the house all day long, depressed and forlorn. I'm not crying myself to sleep each night. I am loving every second of my new life as a mom of two boys, and watching their relationship grow. For the most part, my life and my attitude are the same today as they were before I found out my son was born with microcephaly and a malformed brain.

But honestly, I think the reason why it appears I'm handling the news so well is that I haven't actually accepted that its true. When I look at Dylan, it's impossible for me to see a single thing "wrong" with him. Yesterday he hit the three month mark, and he is doing exactly what I would expect a three month old to do. The smiles and the "conversations" we have just melt my heart!

And yet, there are doctors and neurologists's telling us that Dylan will have all these problems. We are in a different specialist's office just about every week, trying to find answers and determine what we can do to best help our little man out. Each time I walk into another exam room, or talk with a new specialist, I get a huge lump in my throat as I wait for a piece of news that has the potential to tear my heart open again. I remember when Jack was a baby, it felt like we were at his pediatrician's office so often. Now, what I would give to only have the typical well-baby visits for Dylan, instead of specialist after specialist after specialist.

And there is a huge part of me...the part of me that can't possibly accept the truth...that is just waiting for this whole nightmare to all be over so that I can get on with raising my kid like every other typical kid.

Moms...remember when you were pregnant and you had those crazy, hormone-induced pregnancy dreams? Mine always had something to do with forgetting my baby as I went on with my life, or loosing him in a crowd of people. I could hear his cry, but could never quite find him. I would wake up sweating and shaking, terrified that one of these dreams could actually become a reality, and quickly place both hands on my swollen belly to assure myself that my baby was still safe within me.

And then there is the nightmare of having a baby with a serious problem at birth. Something that will affect the rest of his life, and make it that much harder for him to have a typical, happy and healthy childhood.

Right now I'm living in that nightmare, and waiting to wake up.

As we go from doctor to doctor, I can't help but feel like we are searching for a "cure" for Dylan. Like we're looking for the right doctor to tell us the right formula and solve this "problem" for us. And then I can wake up. But Dylan doesn't have a disease that can be cured. He will never NOT have microcephaly, and from what the neurologist has told us, his brain will never have the proper structure. We have no idea what this will mean for him or for us as a family long term, but it is something that we will eventually come to grips with.

So, yes, I guess I'm adjusting well...as well as anyone could. I love this little kid so much that it feels like my heart will burst. Because of what I know about him, I am rejoicing in each and every tiny thing he does, things that I might have otherwise taken for granted. Each time he smiles at me, I feel my eyes well up with tears of joy. But there are hard days. Really hard days. Days when the nightmare feels so overwhelming that I don't feel like getting out of bed. Days when I let myself start thinking about the future and what it could look like. It's a lot to think about, and it makes my heart hurt so bad that I just have to stop.

And then Dylan smiles at me, and Jack throws his arms around my neck and tells me he loves me, and I realize that it's worth it. No matter what happens, or how hard this journey is, these two boys will carry me through. A smile from either one of them is enough to make any hard day a whole lot easier. And it's enough to remind me that this life I am living, wide awake, with the two of them snuggled up on my lap, is my every dream come true.

Surprised

2013-08-27T16:56:00.000-07:00

Since we first found out that Dylan has Microcephaly, I have been saying that I am prepared to be surprised by this kid. Well, he apparently got the memo, and is already in the business of surprising the docs!

We had a series of appointments yesterday at Dornbecher Children's Hospital, in the Child Development & Rehabilitation Center (CDRC). We met with two Developmental Pediatricians and three Physical Therapists, all who specialize in children with developmental disabilities. Together the appointments lasted for over two hours. Some of the time was spent talking through the details of my pregnancy, our observations of Dylan at home, and a history of the specialists we have seen to date. But the majority of the appointment consisted of these five specialists evaluating Dylan through a series of neurological exams. They tested every reflex in the book by poking, pulling, and prodding him. Dylan was a good sport for a while, but he got a bit overwhelmed after being passed from doctor to doctor to doctor. He definitely lost patience towards the end! The worst was a test of his startle reflex and head control, where Dylan was held up in the air, flat on his back in the doctor's palm, and basically dropped 12-15 inches. They did this multiple times, and each time Dylan let them know he was NOT a fan of the test...although he did pass with flying colors!

After the extensive evaluations, the doctors asked Brian, Dylan and I to leave the room. We were brought back in a few minutes later so that they could reveal their opinions on Dylan's development so far.

"Well...we really couldn't find much of anything to be concerned with at this point...We are all very surprised by how well Dylan is developing!"

Dylan being evaluated by all five docs at once.
You can barely see his little toes right in the middle of the action.

You see, before they did their evaluations, these doctors had all read the report from the Pediatric Neurologist we saw a few weeks ago. They looked at Dylan's MRI, and saw how malformed his brain is. They also knew the degree of Microcephaly he was born with. They had all seen just how far below the growth charts Dylan's head measurements have been. Based on what they knew in advance, they were expecting a far different three month old baby than the one we brought into their exam room yesterday morning!

It was so encouraging to hear that Dylan left five highly trained specialists SURPRISED! I guarantee it won't be the last times you hear that word associated with our little man!

They did mentioned that Dylan holds his muscles very tight, especially on his left side. This Friday we will be starting Physical Therapy with him to try to loosen him up. I'm excited to learn from the therapist ways that I can work with Dylan on a daily basis - my goal is to not let him get to the point where he is falling behind! Other than that, the only issue that was discussed as a possible concern was the amount that Dylan sleeps throughout the day. He still sleeps a lot, which could be an indication that his brain is having trouble figuring out the sleep/wake cycle. But I know quite a few babies with perfectly formed brains that struggle with that concept, so as of right now we're not too worried!

All signs are telling us that, at some point in the future, we will go to one of these evaluations and be told that Dylan is falling behind...missing milestones...developmentally delayed. I am prepared for that day, as much as any mom can be prepared to hear this type of news about the child that, in her eyes, is perfect in every way. But when that day eventually comes, I will continue to celebrate every tiny achievement that Dylan makes. I will work harder than ever with him to overcome his challenges, and to give him the tools he needs to succeed. I will raise him to believe that he is fully capable of anything he puts his mind to. I will advocate for him as we pass through the offices of one specialist after another. I will be fully committed to searching for an accurate diagnosis in order to better understand what he will face in the future.

And I will NEVER stop being SURPRISED by him!

Updates

2013-08-22T21:40:00.001-07:00

I've had quite a few people ask me for updates on all the drama in our lives after I posted a couple weeks ago. I'm new to blogging, but it is absolutely amazing to me that people are actually taking time out of their day to read about my family, and these people truly care about what is going on in our lives! So, to all my fans (tongue in cheek!!!), I apologize for not keeping you updated on some of the plot lines that you were following. Here are a couple updates for ya'all.

Dad's 24-hour stay at the hospital a week and a half ago was more inconvenient for him than anything. His ticker is still tick-tocking, and while the cardiologist intends to do some further monitoring in the near future, he has so far found nothing of major concern. The arrhythmia pretty much cleared up on it's own, and he's back to his normal, tennis and golf-playing self.

Brian's job situation is still in limbo. He's had a few somewhat promising prospects, but nothing concrete yet. Keep praying with us that he will find something that both pays the bills and keeps him happy and satisfied!

The broken water heater was replaced by the home warranty policy that was provided by the sellers of our house. So, as of last week we have a brand new water heater! (Which, to me, is somewhat anticlimactic. It's too bad that the home warranty won't buy us a new couch or a bedroom set.) We kicked in a few extra bucks to get something more efficient than was covered by the policy, but other than that it was installed at no cost to us. Unfortunately, when we got home from our beach trip on Sunday night, we found a leaking pipe! I was filling up the bathtub for the boys and Brian ran downstairs to grab something from his office (directly beneath the bathroom). He heard a strange sound in the ceiling and reached up...and his finger went right through the soggy sheet rock! We aren't sure if the leak was caused by the installation of the new water heater (which would be pretty unlikely), or if it was a pre-existing problem that we just hadn't noticed before, but either way it will also be covered by the home warranty. Thank God we found it before it caused too much damage!

Our foundation issues haven't resolved themselves yet...the earth is still slowly eating our house. It will probably be a while before we have a resolution to this one, but it does not look like it will be covered by a warranty. We keep spotting new cracks appearing on throughout the house, on the freshly painted walls. What a mess!

We had a wonderful ending to our beach trip last week. Brian was able to play lots of golf and a bit of tennis. I spent hours talking about life, love, and the joys of raising kids with my cousin, who is also my lifelong best friend. Dylan went to his first movie in the theater (We are the Millers...Hilarious! He slept the whole time), and Jack did some pretty sophisticated sand excavation with his shovel and bucket on the beach. We had dreary, gray weather for part of the trip (which is expected at the Oregon Coast!), and a cranky 2 1/2 year old who decided napping at the beach was over-rated, but overall it was a great week with family and a wonderful get-away for all of us!

I think that pretty much covers the "non-Dylan diagnosis" issues in our lives! So, to those of you who are reading this, or have read any of my previous posts...THANK YOU! Just the fact that you would take the time out of your day to think about my little family and what we are going through means the world to me. Hopefully I will be diligent in keeping things updated, but please feel free to ask if I leave you with questions! I absolutely love the notes and emails I have been receiving, and I can't tell you how encouraging it has been to us through this process. It is an honor to me that you are interested in reading about my life, and I hope throughout the years that I will have a story worth telling.

check one off the list!

2013-08-21T23:33:00.002-07:00

Finally this week we got GOOD news from a doctor appointment! After a couple real bummer appointments (first with the geneticist, where Dylan was diagnosed with a genetic disorder, and then with the neurologist, when we found out his brain is malformed), we were pretty anxious on Monday morning as we waited to see the Pediatric Craniofacial Specialist at Dornbecher Children's Hospital. We were referred to Dr. Emily Rose Gallagher because of the concern that Dylan may have Craniosynostosis, or the premature fusing of the plates in his head. If this had been the case, the only correction is surgery. I can't imagine the stress and anxiety of sending my baby into skull surgery, not to mention the inconvenience of recovering with months of wearing a helmet!

After a thorough exam, Dr. Gallagher assured us that Dylan does NOT have Craniosynostosis. Sigh of relief! She was very thorough and explained to us exactly why we should be confident in her opinion, which we really appreciated. As you can imagine, after receiving the incorrect information earlier about Dylan's brain structure, I'm pretty weary of just accepting what a doctor tells me without asking a lot of questions!

I really liked Dr. Gallagher. She was patient and spent time explaining in great detail what she saw and exactly what we would have seen if Dylan did indeed have Craniosynostosis. She was sympathetic to our situation and took the time to gather all of the necessary information and listen to what we have been through up to this point before rushing into her exam. In fact, as we were driving home from the appointment I actually told Brian I was disappointed that she wasn't someone we would have the need to see again (although I was very relieved at the same time).

However, there was one moment in the appointment that I just can't get out of my mind. We were talking about kids with Microcephaly, and she was telling us about some other cases she had seen. Granted, Dr. Gallagher is young, and therefore relatively new in her career (maybe late 30's/early 40's?). But she specializes in Craniofacial medicine, so if anyone has seen kids with Microcephaly, she has. She was trying to encourage us by telling us a story of a kid she saw years ago while she was in Residency at the University of Washington, where they have a huge Craniofacial Specialty Clinic. Well, the amazing thing about this kid was that he had pretty severe Microcephaly (small head), and although he was late into grade school he wasn't showing any developmental delays. The specialists were all trying to figure out the cause of his microcephaly, but he didn't fall into any of the normal diagnosis's and everyone was amazed by his development. Dr. Gallagher told us this story as an encouragement that we could still hold out hope for normalcy for Dylan, but the point that keeps bouncing back into my head is the fact that normal is SO rare for a kid with microcephaly. Our doctors don't expect Dylan to be like the other kids. They can't tell us if he will ever learn to walk or talk or read, or be able to manipulate a fork or a pencil, or maybe if he will just struggle to grasp the complexity of concepts like algebra and calculus. But the fact that his brain has missing pieces is a pretty strong indication that he will be faced with challenges.

But I'm going to leave all those worries for another day! Right now, I'm happy that we got some good news! And, as I've reported before, Dylan is turning into a pretty amazing little kid and our whole family is falling head-over-heals in love with him!

A week off

2013-08-14T16:31:00.002-07:00

After the last week (really, after the past three months!), our family needed a break. Thankfully, that's just what we get! We had the opportunity to spend the week on the Oregon Coast with my extended family, in a tiny little beach town called Gearhart. This trip has been planned for a while, but it turned out to be the perfect timing for a get away. Three grandmas and 4 grandpas (my mom's siblings & their spouses) to entertain and take care of the boys, along with meals planned and prepared for us, a big cozy house and beautiful view of the ocean is EXACTLY what we needed! We're only two days in to the trip, and we've already had a bonfire and made smores, seen a pod of whales, made multiple trips down to play in the sand, walked to the local bakery for fresh baked scones, watched two beautiful sunsets, and spent precious time laughing and talking with family. It's been the perfect beach get away!

How wonderful that we can just relax as a family and pretend, at least for a week, that Dylan is just a normal infant. And he honestly is! I've said it before, but Dylan is showing no signs of delay at this point. He's eating, sleeping, and pooping just like any other 2 1/2 month old (because that's really all they do, right!?) Right now, he's laying in a swing next to me, in front of the big picture windows facing the Pacific Ocean, cooing and chewing on his fist, intently studying the brightly colored ball hanging from the toy bar above him. He has been smiling and talking to all of my family members for the past few days, and it's been fun for everyone to get to know him better and to realize that, despite his diagnosis, he's just like the other "normal" babies they know!

The thing that I was MOST looking forward to on this trip was to have an entire week with no doctors appointments and no new news. In fact, as I was loading the final bags into the car, ready to take off for the beach on Monday morning, I got a call from the CranioFacial specialist offering us an appointment for Dylan on Wednesday. I'm pretty anxious about the appointment (hopefully they will be able to shed some light on the fact that Dylan was born without a soft spot), and I had been told that they wouldn't be able to see us until October. My initial reaction was that I would drive home from the beach to see them, but then I realized that would mean my week would no longer be appointment-free, and I declined the appointment (thankfully they had another opening next week). I am just cherishing this week of normal!

Monday morning starts our week of doctors, appointments and hopefully new news on the bone structure of Dylan's head (pray that we have no need for surgery!!) Until then, we will relax, enjoy time as a family, watch Jack explore the beach and grow up before our eyes, play board games, work puzzles, smile and coo with Dylan, and remember that, despite everything we have going on right now, we have an amazing life!

I'm fine...

2013-08-09T22:50:00.003-07:00

My sister called today. "Hey Amy, how are ya?" she asked...

"Oh, I'm fine..." I answered, "Except . . .

". . . Dad's in the hospital, my kid has a brain malformation, my husband just lost his job, our house is sinking into the ground, and our water heater needs to be replaced. But, other than that, I'm fine . . . "

. . . . . . . . .

Yep. All those things ARE happening in my life right now.

My 2 1/2 year old, Jack, is famous for answering any question you ask him with "I'm Fine" followed by a dismissive little shake of his chubby hand. "Are you hungry?" "I'm fine!" "Do you need a new diaper?" "I'm fine!" "Are you too warm or too cold?" "I'm fine!" It drives me crazy that his answer to everything is "I'm fine," but then I think of who his mother is and I understand where it comes from.

I am a ridiculously positive person. I love to see the glass half full....no, I actually love to see the glass 99.99% full. I'd just rather spend my time talking about all of the wonderful things in my life than focusing on the negatives. And I can honestly say there are SO many wonderful things, even now in the midst of all this chaos.

I have two amazing children! Jack is such a blessing. He is the happiest two year old I know, and watching him discover this world he lives in is the most fun I have ever had. Dylan has been an incredible addition to our family, despite all of the struggles. Already, I can't imagine our life before he was part of it.

I have a husband who supports our family and allows me to live out my dream of staying home with my kids! Brian is amazing. I knew that the day I met him 13 years ago, but I have grown to understand how amazing he is in the years I have spent with him. The fact that he is willing to get up every day and drive to work, with the sole motivation of providing for the family that he loves, is something that I will never be able to thank him enough for. And because he is so successful at what he does, I am able to stay home and raise his beautiful children. This is a true gift, both for me and for our boys.

I live in a beautiful house, in a neighborhood that I absolutely love. We moved into our new house about 4 months ago, when I was 7 1/2 months pregnant with Dylan. We searched for a house for over a year, and because we were picky and patient, we were able to find our dream house in our dream neighborhood. This summer has been amazing, as we have explored the area and made frequent appearances at the local parks. It absolutely feels like home.

I have an incredible support system. Thanks to you. There are so many amazing people in our lives, who love us and love Dylan. Since I have made our story public with this Blog, I can't tell you how many emails and comments we have received. And EVERY ONE of them has meant so much to me. Thank you all for your loving words of encouragement. We also have an amazing family, and we would be lost without them. You know who you are...thank you.

But...despite all the amazing blessings in our lives, life kinda SUCKS right now! When my sister called tonight and asked "how are you?" and I laid it all out in one short sentence, it started to sink in to me how many things we have going on right now!

My dad DID get admitted to the hospital today, please pray for him! He was having a heart arrhythmia, and since he has a history of heart problems, he took it seriously enough to go have it looked at. Right now there are no new concerns and hopefully he will go home tomorrow, but the docs decided he should stay the night in order to monitor his heart and make sure he is ok. Just visiting him today on the cardiac floor at St. V's was enough to bring back the emotional memories of his first heart attack and quadruple by-pass surgery 10 years ago. Yuck.

My son DOES have a malformed brain. Still, just writing it out or saying it out loud makes me sick to my stomach.

My husband DID just lose his job. Well, as of right now he still has a job, but he just found out that the program he works on got canceled. This means that there will not be a job for him whenever they wrap up the final loose ends (the date has yet to be announced). Talk about a load of stress on our family! Four months after buying a new house and 2 months after having a baby is NOT a great time to loose a job, especially when you are the sole provider for your family. Brian is so amazing at what he does and I have no doubt that he will land someplace soon, but the unknown is very difficult on all of us right now.

Our house IS sinking. We just found out this little piece of information this morning. Our beautiful house, that we just bought 4 months ago, has been showing some signs of settling and cracking. Well, the specialist who came out today to look at the problem let us know that our house is slowly sinking into the ground...and the repair bill is between $27,000 and $41,000. That's Twenty Seven THOUSAND dollars, for anyone who wasn't sure that they read it right. That is a HUGE amount of money to even think about when your husband just lost his job and your son was just born with a malformed brain.

And, our water heater just died. Yep, because we needed one more thing to deal with right now.

So, I guess it's true when they say "when it rains, it pours." I'm not sure why our family is going through all of this at the same time, but we are. And it is so easy for me to just answer "I'm fine" when someone asks me how I'm doing. Really, I'm not all that "fine", but I know the blessings in my life are so much more potent than the crap that is being thrown at me. We will be OK - we will be "fine" - but life might be hard for us for a while. God doesn't give us the promise of a perfect life, but He does give us the promise that He will walk with us through the life that He gives us. So, for whatever reason, God gave my family THIS life and we will walk with Him by our side through it all. I can't wait to look back on it years from now, once we have learned all of the lessons that we were meant to learn, and understand WHY we had to go through this. For now, I hope we can focus on the many blessings we have and make the best of the rest.

So, in the words of my sweet, positive, two-and-a-half-year old angel..."I'M FINE!"

Misled

2013-08-07T00:54:00.000-07:00

"I know you have been told up to this point that Dylan's MRI was normal, but unfortunately you've been misled."

Ouch.

Today was our appointment with Dr. Lim, a Pediatric Neurologist at St. Vincent Hospital. I was terrified of the appointment and what new information we might find out. I kept trying to reassure myself that Dr. Lim could very well tell us that we shouldn't be worried about Dylan's future, and that all the drama over the past two months was just a big misunderstanding, but deep down in my gut I was scared to death that she would reveal something new. Unfortunately on this one, my gut was right

She started the appointment by asking a few questions about my pregnancy and Dylan's birth. She was specifically interested in whether or not he was born premature, and although I assured her that he was born full term, she asked a couple more times if I was sure we had all the dates correct. After typing a few notes into her computer, she turned to Brian and me, paused with a deep sigh, and gave us the devastating revelation:

"I know you have been told up to this point that Dylan's MRI was normal, but unfortunately you've been misled."

It felt like the room was spinning out of control as I tried to interpret what she was telling us. Everything that we knew up to this point was based on the assumption that Dylan's MRI, taken fifteen hours after he was born, was normal. We had been told that his "brain architecture", or structural elements, had all developed properly, and that the only concern was the size. The normal MRI was used to diagnose Dylan with Primary Recessive Autosomal Microcephaly, which meant that he would have intellectual disabilities but no other developmental problems. The normal MRI was what we kept clinging to as a glimmer of hope.

But we had been misled.

In reality, Dylan's brain never developed properly. At birth, a "normal" newborn's brain is covered in ridges. Dylan's brain, however, has far fewer ridges than should be expected. Somehow, when the MRI was originally read, the doctor who wrote the report neglected to mention that this malformation was present. Dr. Lim said that when she first opened Dylan's MRI, she thought for sure that it was an image taken of a severely premature baby, because it appeared that development had stopped at a certain point early in the pregnancy. But since all chart notes indicated that Dylan was full term, she had come to the conclusion that he has a malformed brain, likely caused by a genetic disorder.

So basically, with this new information, what we know now is far less than what we thought we knew yesterday.

Dr. Lim had no clues for us as to what we can expect developmentally from Dylan. The basic indication is that likely there are pieces of his brain that are missing or never grew properly. We won't know what areas he will struggle with until we get further into his development and actually SEE him struggling. However, his potential for development problems are no longer limited to only the intellectual realm. This new information could mean that Dylan has much different problems than we originally anticipated. Not necessarily better or worse, but different.

Our next step is to schedule an appointment with a Pediatric Neurologist at OHSU, who is the expert in Portland on brain malformations. He will help us with further genetic testing and research to determine what caused Dylan's brain to develop as it did. Another specialist. Another appointment to stress out about. Another opportunity for an unexpected diagnosis to throw us onto a whole new course. Ugh.

On the issue of the plates in Dylan's head fusing prematurely, Dr. Lim agreed that we had reason to be concerned. She thought that his head felt very smooth and didn't have the typical ridges that can be felt between plates at this stage of development. She also didn't have any explanation as to why he would have been born without a fontanelle (soft spot). She ordered an X-ray of Dylan's head, which we were able to get done this afternoon, and hopefully we will have the results by the end of this week. (Unfortunately poor Dylan screamed his little head off throughout the entire X-ray. I'm pretty sure he was about as tired of being at the hospital as I was!)

So, at this point we are left with a TON of questions, and not many answers. What we thought we knew before has all been negated with this new information, and we don't really even have enough of a diagnosis right now to do new research on what to expect! I guess this whole "wait and see" game continues, with no end in sight. My hope and prayer is that we are able to witness Dylan defying all of the odds and proving "them" wrong. These specialists are only people, and they have no way of accurately predicting the future. Even though we have been told that Dylan's brain is malformed, no one can tell us that he isn't capable of overcoming the challenges associated with that discovery. As I've said before, I am fully prepared to be amazed by this kid.

Defying the odds!

2013-08-01T17:57:00.001-07:00

Despite his diagnosis, as of today Dylan is a completely wonderful, normal, amazing 2 month old! I feel like when people hear that he has Microcephaly, they start looking for what's wrong with him. He does have a smaller head than other kids his age, but other than that he is perfectly normal! Here are some of the great things he is doing already.

SMILES! Dylan shared his first smile with us on June 19th, when he was only 3 weeks old. It was actually on the same day that we had that horrible appointment with the geneticist. We had just received the devastating news on his diagnosis, and afterwards we drove over to my parent's house to pick up Jack. My mom was holding Dylan as I tried to explain what the geneticist had told us, and Dylan looked up at her and gave her the most amazing, wide mouthed grin! It was as if he was telling us "don't listen to those crazy doctors...I'm ready to surprise you all!" I thought for sure that it must have been gas - three weeks seemed way to early for a genuine smile - but over the next few days he convinced us that he was really smiling! It is absolutely heartwarming to see!

SLEEP! Warning...if you are a new mom with a baby who gets up multiple times a night, you may want to skip over this section. I don't want to loose any friends over this little brag session! Dylan is sleeping at least TWELVE HOURS a night! Seriously, Jack was a good sleeper as a baby, but Dylan is amazing. I feed him around 8:00 pm, and he sleeps until 8:00 or 9:00 the next morning. I've actually had to wake him up a few mornings! I don't know how his little tummy can handle that long of a stretch at this point, but as long as he's happy I'm ok with it! He has been sleeping stretches of 6-8 hours since he was just a couple weeks old, and has stretched it out to the full 12 hours as of this past week. It sure makes dealing with everything during the day a whole lot easier when I'm able to get a good night sleep!

EATING! Another area in which Dylan is a rock star! He started nursing great right off the bat. He lost just a few ounces right after he was born (typical of a newborn), and was already back up to his birth weight within a few days. As of last Friday, just a couple days shy of his 2-month birthday, he had already doubled his birth weight. This is actually a really encouraging sign, because most babies with neurological problems have a very hard time with breastfeeding. Apparently the process of sucking, swallowing, and breathing at the same time is pretty complex, but Dylan was up for the challenge! He eats just about every 2 hours throughout the day (which I'm ok with if he's going to sleep through the night!)

TUMMY TIME! It gets a bad rap from most newborns, but Dylan LOVES his tummy time. If he is fussy, I roll him onto his tummy and he is almost always immediately soothed. He has a really strong neck, and is happy to just hang out on his tummy and watch his brother play.

I'm being told that we can expect Dylan to start missing milestones and falling behind other kids his age, but so far that has not been the case! This kid just continues to amaze me in so many ways. I feel like he is starting off a lifetime of defying the odds and proving "them" wrong. I can't wait to witness his development and report on his amazing progress!

Appointments

2013-08-01T16:33:00.000-07:00

Since we found out about Dylan's diagnosis, I feel like my life has been spent taking him to appointments, scheduling appointments, and following up on appointments. And I'm pretty sure it will only get worse before it gets better! Thank God for great insurance (and for the fact that our deductible is already paid for this year!!)

One of the big ones that is coming up is with a Pediatric Neurologist. The appointment is next Tuesday, and I'm honestly scared to death. Up to this point, we have had a lot of doctors and nurses tell us their opinion from the limited information that they have. Most of the time it seems like they are running a quick google search on Microcephaly before they come into the room and tell us what to expect. While this can be frustrating and leaves us with a lot of unanswered questions, it also allows us to remain optimistic. I can choose to believe that some of the scary things we hear about, like seizures, won't actually become a reality for Dylan. The Neurologist, however, will know enough to look at Dylan's MRI and give us a much better understanding of what we can expect for his future. I know that the more information we have about Dylan, the better off we will be to help him overcome the challenges that he is faced with. But I'm just so scared that we will find out something new, and have to go through the process of acceptance all over again. Our pediatrician has also been concerned that since Dylan was born without a fontanelle (soft spot), he may have Craniosynostosis (where the plates in his head have fused together prematurely). If this is the case, Dylan would have a surgery to separate the fused bones. This is a relatively routine surgery and, from what I've heard, recovery isn't all too horrible, but I just can't imagine the stress of sending my baby boy into surgery to crack his skull! Hopefully next Tuesday's appointment will answer some of these questions. Please pray with us that we receive good news, not bad, and that we gain a better understanding of areas that we can help Dylan. And pray that I'm not a nervous wreck between now and then!