Christmas Day

Before Spring is upon us, I figure I should wrap up Christmas, 2014.  We went to a lovely, child friendly Christmas Eve service at the church where Squirt goes to preschool and went home for chili and salad afterward.  Mom and Dad were in town through that week.  Its become tradition that the kids open one gift on Christmas Eve.  They might be figuring out that the gift is always pajamas. Always will be. Sorry guys.  Although they do still find excitement and joy in PJ's.  This year was snug fitting matching stripes from Hannah Anderson.  Darling.  Tim might have disagreed.

It's also tradition that we sprinkle reindeer dust and glitter on the driveway so Santa's deer friends can find us and satisfy themselves with a midnight snack while Santa does his important business inside.

 Priceless.  

In the morning, we were blessed with a 7:00am wake up, which isn't even common on a typical day. They immediately headed to our new fairy garden and were pleasantly surprised with the arrival of two fairies.  One was Dude's ninja turtle tooth fairy, which he naturally assumed would set up shop in these new digs.  My dad and I found a turtle to fit the mold.  Phew.

Santa fills our stockings with small but uber exciting tokens of fun.  We chose to keep it simple with three gifts per kid:  something to wear, something to read, and something to play with.  Pretty sure we'll stick with that moving forward.

Grandma V and Grandpa Marc blessed Squirt with a new, grown up kitchen this year.  She hasn't stepped away from that spot for the past two weeks.  

 Dude got his wish, a hanging, cozy chair for his bedroom.  Thanks Grandma and Marc!

 What do you get for 2 parents about to begin life as retirees?  Why a 3,000 piece puzzle and a book about retirement of course.

 Squirt became a mini-mom last Christmas when Nana and Papa gave her Baby Stella.  This year, she received Stella's twin brother, now named Fella.  Fella has some work to do in becoming as "loved and weathered" as his sister is.  

Dude told me all December long that he would only wear short and a t-shirt to bed until I got him footies.  He won.  I got tired of watching his cold little self get into bed every night.  He believes he is a Tiger in real life, so these PJ's fit his mold.  

We had a lovely, relaxing morning of bagels, lox, oatmeal casserole, and gifts, invited our friends Pete and Diane over for crab legs, steak, and prime rib Christmas dinner and then headed over to our old neighbor's new house for drinks and dessert.  We had cake and sang Happy Birthday to a little babe named Jesus while we were there, capping off an awesome day.  Hard to believe the season is over.  

Results

If you know our family you know that we have spent the past couple years investigating, digging, treating, aiding and advocating for our Dude.  God has blessed our little man with an amazing amount of gifts and talents and treasures that we hold so incredibly dear.  He also has bestowed upon him challenges that have taken investigation and time to unfold and dissect.  Nothing about our little man is black and white or even gray.  Everything about him is colorful in really beautiful and perplexing ways.  The blessing about his challenges is that he rolls along in life with ease and pure joy.  He is not phased by his sensitivity to the chaos and noise of the world around him or his inability to control the mini urges his body presents to make noises or blink his baby blue eyes.  He's filled with joy regardless of the labels that we've been given as his parents.  And yet we have continued to dig because we haven't felt like we've gotten to the bottom of what's truly going on in our son's magnificent little brain.

We were right.  After visiting with a Child Neurologist at Children's Hospital a number of months ago, she made the Tourettes diagnosis and also observed what she believed looked like two Absense Seizures during our 30 minute visit.  This was a foreign concept to us.  Seizures?  No.  He has challenges, but seizures were not one of them.  They had never entered our minds.  Dr. Collins recommended we get an EEG to rule this possibility out.  We left, feeling a bit stunned and bewildered but not overly concerned.  After all, we were there to talk about Tourettes.  This was completely unrelated and hardly a viable possibility.

2 months later, Tim's Dad came for a visit and encouraged us to order the EEG.  He's a doctor and values information and adores his grandson.  We took his suggestion to heart and scheduled the EEG for December 26th.  We kept Dude up until 1:30am and woke him up again at 4:30am in order to force sleepiness upon him for the test.  He considered that night to perhaps be the best of his life and was amazingly compliant and sweet the morning of the test.  He sat though the placing of tape and wires and foreign objects to his little skull and won over the nurse in an instant.  They had him blow on a pinwheel and flashed obnoxiously bright lights in his face and then he obediently fell asleep. The test went perfect and they got exactly what they needed to get.
  

2 weeks later, yesterday, we got the results.  We assumed since so much time had gone by without hearing that it was normal.  Not so much.  The EEG was abnormal and displayed seizure spikes. Epilepsy.  He has Epilepsy.  I'm pausing here because I'm not quite sure what else to say.  Dude is a happy and healthy 7 year old boy.  He's not sick or struggling outwardly.  That's key in all of this right?  We're blessed that his struggles are mild and not life altering or threatening.  But now he has a seizure disorder and Tourettes and Sensory Processing Disorder and ADD?  Really?  All those things are unrelated to each other?  Bullshit.  Are the seizures at the root of all this other stuff he has to overcome?  Are they causing him to be spaced out and unable to focus?  Yes.  Are they causing him to wake up some mornings ready for the day and others putting him in a state of zombie like behavior.  Yes.  We have to believe so.  And our Neurologist suspects so too.  Is the past 2 years boiling down to this?  That's our unanswered question.  Is this where it all stops and we get to finally start an uphill path that doesn't keep veering off in different unknown directions?

Here's where we're at.  The results are confusing to the neurology staff.  Of course they are.  The type of Epilepsy it's showing is not the type they suspected he has.  It's a type that produces night time seizures that can effect behavior during the day.  Makes sense, but it doesn't account for all the moments of seizure like behavior we see during the day and what our doctor witnessed during our visit.  So, it could mean he has both or it could mean that he's part of the 20% of kids whose results show one type but really it's another.  Our doctor can not provide a treatment plan until she knows exactly what we're dealing with.  We agree.

How do we get at the heart of what's really happening?  We check into Children's Hospital for 3 days and hook him up for a 3 day EEG and video monitoring study.  That's what we do.  But first we do a brain MRI to get a picture of the brain to rule out any foreign objects or structural issues on the brain itself.  There are too many "weird" symptoms going on that Dr. Collins can't explain, so this is her first line of business.  Rule out.....I'm leaving that blank and putting it directly in God's hands.  I don't have the capacity to even go there and so I won't.

Tim and I are not finding words for each other.  Just a lot of deep breathing and looking up.  Dude is asleep on the other side of the wall and he's peaceful and healthy and happy.  That's enough for today. We've gotten through the past two years and he's grown and progressed and matured.  God has physically had his hand on my son's head through all of it.  He lifted him up through his accident and has given him a happy little heart through all the therapy and doctor visits we've put him through.  God will continue to do that through this next phase.  This won't leave him discouraged and sad.  Right?  He won't start questioning his complex brain and ask why he's going through yet another round of tests and doctors. Right?  His spirit is my main concern.  I'm dedicated to protecting that boy's spirit.  But I'm not quite sure how much longer I can lift him up.  This straw feels really shaky.  It feels unknown and heavy. Really heavy.  If we fear anything, we fear the road that's ahead.  The length, the medication, the toll on Dude, the process of figuring it all out and honestly, the cost.  What we've already done pales in comparison to what we're about to rack up.

It'll be a couple weeks before further testing is scheduled.  We're not going to broach this conversation with Dude until we have to.  We both need time to process and sit with it before we have the right words for him.  Calm and natural words.  We need time for God to instill His comfort on us.  I do trust that He will.  I don't feel scared.  We feel heavy and tired and perhaps a bit overwhelmed, but not scared.  I trust God is in control of our son.  I can't say I've allowed Him that authority until recently, but I'm getting there.  He has used us to advocate and fight for Dude. He knew what he was doing when he formed out family.  He knew how bull headed and determined I would be on his behalf.  Now I'm giving it all to Him.  I have to.  We can't therapy away Epilepsy. We can't develop home strategies to lessen it's blow.  We can't ward off medication with this one.  Any sort of control I think I possess has been thrown out the window.  I'm grateful that I'm in a place where that's okay.  God has definitely guided my winding and haphazard path this past year to put me in this place.  I thank Him for it.

If you're a believer in the power of prayer, Dude could use it.  We all could use it.  Squirt too.  She sits back and allows all this to demand attention that she craves.  Pray for peace in God's plan.  That's really the gist of what we need.          

    

One Whole Hand, Minus One

Get outta here with this turning 4 business. Our sassy pants is nearing a whole hand old and we want to eat her up more now than ever before. She is vivacious, compassionate, bold, bashful, burbs like a man (on command), motherly, flexible and then definitely not flexible, hilarious, dramatic, in charge, cuddly and incredibly easy to love.  She keeps us on our toes, calls us out when we're being unreasonable or "so mean," and knows the exact millimeter to push on her brother's buttons. Our journey to becoming and acting as her parents has been filled with awe, grace, and joy.  She already has so much figured out and we are so blessed to help her walk through the rest of her life as her Mom and Dad.   

Happy Birthday sweet thang. I'm so so proud to be your "sweet Mama."

More Christmas...

Continuing on with Nana and Papa Christmas week fun.  We hit the Nature and Science Museum to check out their new Discovery Center and watch an iMax.  My parents eat this stuff up, so we frequent this museum.  The kids could hang here all day.  Dude might have been able to wring out his clothes, post water play, but it didn't seem to bother him.  

 Squirt dug up a massive dino.  

 This is one of the coolest shots in Denver.  City Park sits around a lake with views of downtown and the mountains.  It was balmy out, making for a perfect photo shoot.

 Do you want to build a snowman?  I say in a sing songy Frozenesque voice.  

  Our Vogel cousins sent us this rad Fairy House kit.  We spent an afternoon building it from all natural supplies and a ton of hot glue.  We outfitted the final product with two fairies, one Dude's toothfairy who happens to be a turtle and the other a now wingless fairy for Squirt.  

More Christmas fun to come.

Chugga Chugga

Our suburban oasis is about an hour from a rather sweet, old fashioned mountain train that loops around the town of Georgetown.  It's completely non-threatening for littles (and bigs with height issues) and provides a charming and scenic atmosphere.  For the holidays they offer a Santa Train option, including hot chocolate, cookies, the man in red himself, elves and jingle bells for all.  My parents flew in for the week, so we decided to kick off our Christmas festivus with a Santa Train Ride for the entire fam.  Tim and I are more than pathetic about getting our kids up to God's mountains throughout the year, so this provided an excellent excuse.  It was awesome - and so beautiful.  The kids, the parents and the grandparents thoroughly enjoyed the entire experience.  

  

As we boarded, the kids soon learned that Sir Santa was hanging out in our car until we departed. We chose seats right next to the pot bellied man and Dude could hardly contain himself.  He might have peed a little bit.  We all got plenty of QT with Santa.  Dude was able to politely ask for Frosty the Snowman's REAL magic hat and luckily, Santa explained that he couldn't take that away from Frosty.  I mouthed him a silent "thank you."  Squirt refused to acknowledge Santa and we later learned that she did not believe him to be the "real" thing.  Why give attention to a fraud?  I understand.

    

The excursion lasted an hour, which was perfection.  Just enough time to get our fill, but not too much time for the ants in our kids' pants.  

  

The difference between our son NOT realizing I'm taking his picture and then becoming aware.

 Pure joy.

 We convinced Squirt to appease us and take a Santa shot.  It helped that Santa gifted her with a shiny bell first.  

That's the best we could do, sans paying $20 for the "professional" shot they offered.  

If you're a Coloradan, this is a GREAT holiday treat.  Definitely worth the buku bucks spent, but hold out until the Groupon comes out and save yourself 3/4 of the price we paid for being antsy.