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!