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!

A week off

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...

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

"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!

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

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!