I am in awe of you

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

I am in awe of you.

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

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

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

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

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

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

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

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

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

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

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

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

Ready....Set....

...ROLL!!!

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

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

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

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

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

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

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

Have a great weekend!

Genetics Update

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

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

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

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

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

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

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

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

Prayers...please...

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

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

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

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

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

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

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

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

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

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

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

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

Awareness

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.

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

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

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

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!

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!