Sunday, January 25, 2015

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

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 1st? (I also pretty consistently bomb on my resolutions by the 2nd or 3rd 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 1st 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 25th 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 23rd, 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 2nd 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!

Walking to the park!

Walking to the park!

1 comment:

  1. Amy,
    I love reading your blog! It is a great therapy for Laurie and I also. I wish I had a way with words the way you do. Our kids and our journeys are so similar it is uncanny. One day we will have to get Parker and Dylan together! Thank you for writing!

    Kyle and Laurie