A hard week.

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!