Wednesday, October 21, 2015

Where Are We Now: Milestones, Setbacks, & Progression

Holy recap!  Where have we been the last several months?  Life for us has been a whirlwind.  It has been full of celebrations!


  • Mila took her FIRST, independent STEP on July 6th!
  • She turned THREE on July 16th!
  • Mila started Preschool on August 19th.
  • She started spoon feeding herself again in September.
  • Mila WALKED about five feet, independently, on September 18th!
  • Mila got her FIRST haircut on October 20th!

  • Mila was sick for about the last six weeks.  During that time, she has been to the OR (operating room), twice, for new PE (pressure equalizer) tubes.  I'm really hoping we will not have to re-visit the hospital unless it is to get her tubes removed!  She has missed a lot of school, but the sporadic days she is able to attend, she is happy and eager to be with her friends.
  • During illnesses, Mila is typically not very vocal or active.  She is usually happy despite any physical ailments, but tends to kick it into "neutral" during her down times.  I used to be ridden with anxiety any time she was sick.  I was always fearful she would forget the things she had recently learned, or her depressed immune system would make it impossible for progress in her near future.  Now, I deal with whatever illness is at hand and allow Mila to set her own pace.  I let her choose when and what she eats, how much she walks, or what she decides to do independently.

  • Mila is walking like a CHAMP!  She doesn't walk all the time, but when she is feeling it, she will practically run.  Her stride is wider than normal, but her stability is a brick house!  She just got a new walker with bigger tires, more mobility, an easier turn radius, equipped with a seat for rest and a snazzy basket.  She used it at school yesterday and only needed little assistance.  We will mostly use it at school and out in the community.  Our favorite moments have been walking hand in hand with Mila, and without notice or hesitation, she lets go and keeps moving.  Exploring her surroundings has been our sweetest moments.
  • Feeding therapy is going great!  Her therapist, Jeanine, realized Mila's body needs a lot of awareness prior to trying new foods.  Before every session, we "awaken" her body with swinging and "jumping" on the trampoline.  Jeanine actually does the jumping while Mila's body soaks up the input. It has made the most positive difference.  She is learning how to prep the table and clean her hands before eating.  She has stopped throwing food on the floor.  Now, if there is a food she doesn't like or want to try, she simply pushes it to the side.  Recently, Mila's new foods are guacamole (what?!), greek yogurt, bean stalks (crunchy, salty "chip" made with beans-protein!), and ham.  She gagged on it so much, she ended up spitting it out.  Spitting out food she cannot chew and swallow is a "first" for Mila and a big deal for us!  Although Mila's palate will not advance here at home, I am so proud of her  efforts and progress in clinic.
  • Hippo therapy is still our "happy" time.  She has great days of riding in all positions, listening and following directions, crossing midline while tossing rings onto poles, and using sign language for communication.  We also have days where all Mila wants to do is simply, ride. I love how she lights up the second her feet hit the dirt.  I love how she squeals with excitement and impatience while she we wait for her session to start.  I love watching Mila bop her head, flap her hands, and laugh from the sheer joy, the horse's stride gives her.  I hope she will always love riding as much as I love watching her ride.
  • Mila's music obsession is stronger than ever!  Whether it's Taylor Swift, Bruno Mars, Pharrell Williams, Hickory Dickory Dock, or some good ol' praise and worship music, my girl feels every note.  She is also becoming quite the keyboard player these days.

Not only have we been celebrating the heck out of Mila, but we also have been having fun with family and friends, climbing mountains that are 14,000 feet above sea level, and getting ENGAGED! Does an engagement make us official?  I thought we were pretty official the day we met, but Michael wanted to keep a little tradition alive.  It was a sweet moment with just the three of us.

Sunday, June 14, 2015

Prepping for Preschool

I started looking at preschools the moment we moved to Colorado.  I've had dreams of her attending this cute, private school on the mountain side- open ended play, an organic garden, chickens, a tractor, hiking paths, teepees, and a massive sand box. Most importantly, the classrooms have a small 1:4 ratio (teacher:child) and they pride their success on parental involvement! See how one could get carried away in thoughts of that kind of "happy?" I've struggled with sealing Mila a place in Fall enrollment.  As wonderful as the school appear to be, they are a private entity.  Meaning, they are not obligated to provide Mila the services she'll need to function in a classroom.  I'm not implying they wouldn't access services for her, but they couldn't guarantee anything.  Ultimately, they could require ME to be her assistant in the classroom.  I really hope her teachers will always allow me to be a part of her classroom.  However, attending school as her assistant-nurse-therapist, is not ideal.  I am with her all day-every day.  The exciting, bittersweet part of this transition is allowing Mila to thrive in a social environment without me.

After much discussion with her therapists and Michael, we feel very positive about her attending public preschool.  With public schools, they are mandated by the state to provide services for children with disabilities.  Mila will probably qualify for an IEP- Individualized Education Plan-which means she will have an assessment with the school board to determine what services she'll need to function in the classroom.  She will have her assessment with our school district next month.  We're hoping it will be a positive experience without any "mama bear" moments.  As a parent, you want to entrust your children will be cared for and protected.  I know my reservations about leaving Mila in the hands of others, who don't know her, are completely normal.

Will there be someone to walk along side her as she navigates her walker in a new environment?- her perception of distance isn't always spot on :)

Who will help her get in and out of her desk or chair at the table?

Is there someone who can help her safely navigate the playground equipment?

Will someone console her when other kids are screaming or crying?- these sounds make her very upset.  We typically hug and sing our way through those moments.

How will they help Mila work around her sensory aversions?- food, grass, sand, other surfaces/textures

I know it will take time for them to learn who Mila is; what she loves/hates, how she learns best, what motivates her, etc.  There will be an adjustment period for all of us.  It is my job as her mom and advocate to be involved, be assertive, ask questions, offer advice, and be supportive of those who are helping to carve Mila's path in life.

In the meantime,  we are mentally preparing ourselves for celebrating her 3rd birthday and all the changes to come!  I was so hopeful Mila would be walking independently by now, but unfortunately her fear of risk taking, has hindered her progression.  It has taken me a while, but I have learned to respect her fears.  Mila works on her own agenda and cannot be forced into doing anything.  She will walk when she is ready to do so :).

In the meantime, we're celebrating our small victories:

  • Mila is standing by herself a lot; without holding on to anything.  
  • She is saying "dada" and "bu-bu" 126532764 times a day.  Sometimes we even hear a "tha" and a "la." As much as I would love for her to talk; babbling is sweet music to our ears.
  • She has re-learned how to crawl onto some furniture (it was a previous skill lost), and seems to do it more frequently
  • Mila seems to be more engaged in "play."  She can be very attentive with great eye contact.
  • She is transitioning (while holding on) between objects really well.  She's not afraid to cruise in the garage or out in the community.
  • Her bear crawl is becoming more of a mastered skill.  She's walked six or so steps on her hands and feet.
  • She is very enthusiastic about letters.  If she sees words on anything, she is quick to point to each one, and wanting us to say the letters out loud.
  • My girl LOVES sign language.  We know pretty much every sign for farm animals-her favorite.  Anytime she sees pictures of animals, she points and looks to us for the action.
  • I am still unsure of Mila's aversions with food, however, mealtime has become more pleasurable.  She is getting better about using her five senses to become more comfortable with unfamiliar foods.  She has recently eaten and enjoyed carrot and cucumber sticks :)
  • Music reigns as her biggest motivation.  Taylor Swift's "Bad Blood" and Bruno Mars' "Uptown Funk" are two of her current favorites :)  Don't worry though, "Shake It Off" still gets my girl moving like no other.

"Hanging Lake"-one of the most beautiful hikes we've ever done

Saturday, April 25, 2015

Mila's Story of Survival

As a mom of a child with developmental delays, low muscle tone, and fear of independence, I expect there will be falls, bumps, bruises, and maybe even stitches.  Those are injuries that can be fixed.  However, I have never anticipated, nor could fathom the thought of losing Mila.  Last Saturday night, we lived through a hysteria that is unfathomable. Yet, it's a story that I have to share.

We took a trip to Moab, Utah with some friends for a weekend of camping, hiking, biking, campfires, and a ton of fun.  If you don't know anything about Moab- google it.  It's one of the most picturesque places in the United States.  From the beginning, the stars were not aligning in our favor for a tell-all weekend.  Cold temps and lots of rain gave us sleepless nights, rainy hikes, very few fires, and bonding indoors of a hotel (Mila could not stay outside in a cold tent for hours).  After a few days of dreariness, Saturday brought warm sunshine, clear skies, and beautiful views of Arches National Park.  Everyone's mood was instantly lifted.

The calm before the storm

We hiked for several hours before returning back to camp.  Since the day and evening had been so nice we decided to brave tent sleeping again; despite the rain forecasted.  Clouds rolled in for a few minutes, but we were spared any showers.  We got to enjoy a gorgeous sunset!

Mila hadn't slept much since the start of our trip.  She likes her elements of comfort-her bed, a dark room, with a noise fan in the background.  I knew she was exhausted.  I put her to bed before dusk so we could enjoy our dinner without interruption.  We closed all the windows of the tent so she wouldn't be distracted by our activity.  Since the evenings get cool very quickly, we equipped the tent with an "inside" buddy propane heater (it literally says "made for tents" on the box).  Her several layers of pjs and the heater set her up for a cozy nights sleep.

We had just finished dinner.  Mila was quiet as a mouse-I knew for sure she was asleep.  As we were playing a game around the fire and enjoying a few beers, these gusts of wind came so unexpectedly.  When I say gusts...they were CRAZY! They were anywhere from 20-40mph gusts.  Everyone was scrambling to gather loose tarps, camping chairs that were flying into the fire, small miscellaneous items that couldn't stay in place.  I looked over at the tent and saw it shift really hard to the left.  I thought for a second that these hard winds would probably wake her up. 

 I decided to walk to the tent to check on her.  I was only a few feet away when the tent came off the ground and shot about 30 feet in the air like a balloon.  Not kidding.  The tent was unreachable.  My only view was this flying tent and the Colorado River as its background.  I was screaming.  I was screaming and running as hard as I could.  That tent was not going to leave my sight.  I was going swimming.  I just knew we were all going swimming in that very instant.  The tent flies over the embankment. It flips several times down the hill.  I fall as I watch it flip.  Michael took one leap and was at the bottom of the embankment as the tent stopped rolling.  My recovery was instantaneous. I was there milliseconds behind him.  Our friends were at the bottom just as fast as we were.  Everything was happening so fast.  We all white knuckled the tent as the wind was blowing ferociously.  I was still screaming.  Michael and I were on the same side scrambling to find a zipper.  The tent had caved in around all the shrubs that stopped it so abruptly from rolling into the river.  We couldn't find a zipper.  I couldn't hear my baby.  Although I was screaming hysterically and the wind was so loud, all I heard was dead silence.  I knew she was dead.  I think I'm going to throw up.  I feel sick as I type the words I thought would change our lives forever.  

Michael was calm but I could see the fear in his face.  We just kept scrambling for the zipper we couldn't find.  I'm yelling, "Your knife! Cut the tent open!  Cut the f*cking tent open!"  What seemed like an eternity, was only seconds before he cut into it.  He couldn't see anything inside.  It was dark.  All I hear is silence through my screaming.  I fell to the ground.  I couldn't stand anymore.  "Where is our baby? Please get our baby out of there!"  This gentleman at a nearby campsite appeared beside us with a lantern and flashlights.  Michael dives back into the tent while he holds the light.  "Is she breathing?  Please tell me if she's breathing!"  I couldn't stop screaming.  My body wouldn't let me.  He comes out of the tent off his knees, with our baby in his arms.  Mila looks around as if she had only woken ups seconds before (she was wedged in a corner of the tent wrapped in our sleeping bags.)  I grab her right away.  "Are you okay?" as I brush her hair back, squeezing her arms, looking her up and down..."Are you okay?"  Thats all I could say to her.  I was certain she would respond with just a "Yes, mom!"  I've never wanted her to talk as much as I did that very second.  I couldn't move.  All I could do was keep her pressed against me.  I couldn't stand up.  Our friends had to practically carry both of us back up the hill.  I wasn't going to let her go.  They walked us to the truck to sit down.  I was in shock.  I was numb.  I kept brushing her head with my hands; analyzing her little limbs.  Our friend, Sam, who is an Emergency Room doctor, strongly encouraged me to undress her and check her out from head to toe.  Check for lacerations, puncture wounds, broken bones, etc.  Check throughout her hair and behind her ears.  I put Finding Nemo in to play while she sat in my lap.  Within the first few seconds of the movie, Mila was laughing and bopping her head.  I knew at that very second she was okay.  I quickly looked her over.  Not a single scratch, bump, or bruise.  No signs of injury.  I immediately lost it.  I couldn't stop crying uncontrollably.  As I sob, she's still smiling and laughing.  Michael and our friend, Kerri had come to hug me at separate times.  No one could believe what just happened.  No one could wrap their heads around it.  We were all in complete shock.  

What are the odds of that happening?  You hear about freak accidents, but what are the odds of a tent coming out of the ground- flying high in the air- flipping several times- landing over 40 feet from where it once was staked into the ground?  1 in 100,000? 1 in 1 million?  Michael had even replaced all the original stakes with heavy duty metal ones.  He had placed extra on the side that came out of the ground first.  We think because it had rained so much, the ground was too soggy to sustain those gail force winds.

My girl went on the ride of her life and survived without injury!  There is no other explanation than the fact that God had his arms wrapped around her the entire time.  From the first flip in the air to the tumbles on the ground; she was protected.  Throughout my recent journey of discovering my faith, I have never felt his presence stronger than I did at the very moment Michael pulled her out of the tent.

Needless to say, we didn't stay at the campsite that night.  We took up residence at the hotel we had previously stayed.  I was couldn't let her out of my sight.  I didn't want to.  I watched her sleep all night.  It's difficult to avoid thinking "what could have happened."  The hours following I had realized there was an indoor propane heater on in the tent with Mila.  How did it not catch on fire?  Apparently, the product advertisement says there is a "shut-off" mechanism if the tank becomes unsteady.  Thank God.  How did she not roll into the river?  The water was right where the tent had stopped.  Or so we thought.  Michael went back to early the next morning to gather whatever we couldn't salvage the night before.  He took pictures of the site and what was left of the tent.  He went back down the embankment where the tent had stopped.  Apparently she had not rolled to the edge of the river.  The tent landed at the edge of a cliff that had a 8-10 foot drop- into the river!  Whaaaaaat!  We and no idea at the time.  As we discussed the events with our friends, we learned that Sam had gained access to the tent on the opposite side before Michael cut it open.  Her pack-n-play was visible but turned over.  He couldn't move it, so he punched a hole in it and ripped it open-ninja style.  She wasn't there and it was too dark to see past it.  I know he would have ripped through the earth to find her if he had too.  

Everyone was so quick to respond.  I will forever be grateful to our friends for their immediate assistance and quick thinking; their compassion and love.  I had an immediate flashback of a comment I made when our weekend started...."Well if anything catastrophic happens, we have the whole medical team with us- Doctor, Physician Assistant, two Nurse Practitioners, and my rusty Nurse skills."  Although it wasn't catastrophic, it was by far, the most horrific, terrifying experience of our lives.  The years of caring for very sick children; some of whom survived and some who didn't; never prepared me for that moment.  I was not prepared to bury my baby.  I was not prepared to live without her.  I won't ever be.  I am so grateful for His love and mercy; for Him allowing us to have more time on this earth with Mila.  She is a beautiful soul, with a purpose in this life that I will never be able to define or understand.  Only He knows.

"He tends his flock like a shepherd; He gathers the lambs in his arms
and carries them close to his heart" Isaiah 40:11