Celebrating One Year in Mile High Country

I wish I could've written earlier this week but we've had a lot going on.  It almost seems impossible that we've been living in Colorado for a year!  Time flies whether you're having fun or not.  Seriously...life goes by so fast and you don't even realize it until time has been lost.  This past year has been one of the hardest we've endured in our lives, and thankfully it'll be a year of struggles that Mila won't remember.  While it feels like our hardest year yet, it's also been filled with tons of joyous moments :).  I look forward to sitting with her for hours, looking back on the memories and reading the stories of how she overcame soooooo much!  She's my fighter!

Since I've been so consumed with Mila's progression and Michael consumed with work, our friends circle is pretty minute.  We've recently been making a conscious effort to improve in that area.  Honestly, "friends" have been the furthest thing from my mind because Mila and Michael are my number one priorities.  We bask in family time when we can get it!  And...lets be honest, my friends in NC are my favorite part of "home!"  A new friend gained cannot compare to the love of my girls back east.  They have been such a huge support system to me...I could not have survived this past year without them on the other end of the phone!

My nearest and dearest best friend also celebrated her first year of marriage this past week!  I remember how crazy and hectic things were back at home.  Trying to be a decent MOH, while packing up our entire lives was such a blur.  Michael, his dad, and his brother pretty much did ALL the work!  The wedding was simply amazing!  It took place on the farm where Hope and James now live.  I still can't believe Hope is MARRIED!  I can't wait to see her in August!

Hope's BEST DAY EVER! May the 4th Be With You, 2013

We got to celebrate our first year here by getting PE tubes for Mila.  Although her hearing tests had been normal...the continuous infections were beyond annoying!  Seven doses of antibiotics in less than a year was ridiculous.  Needless to say, Mila is not an "ideal" patient.  I mean, in the pediatric world, you can't really expect any kid to want to be poked or prodded.  Just to give you an idea...EVERY report given from pre-op, intra-op, and post-op all started report with, "Yes, I have Mila Young...yada yada yada...she DOES NOT want ANYONE to touch her BUT mom!"  Of course!  Only my kid would be the fussy, crying child if the nurse even walked into the room, let alone touch her.  Hahahaha!  I got to go to the OR with her while they put her to sleep.  Anytime you're draped over your kid holding them, while gas is being administered, singing their favorite tune...there IS a chance you could catch a gas buzz!  Luckily no one had to carry me out :).  Wouldn't that have been a good story.  She was a trooper despite her "touch me not" ways.  She slept for 4.5 hours when we got home and woke up as a new kid!

The Smith glare she gave ALL healthcare team members (check out those red eyes)

She wanted her Daddy after surgery

I have to tell you how much Mila rocks...This kid! She woke up from her crazy long nap and all she wanted to do was pull up to stand!  She had been doing it with assistance, but as soon as I put her on the floor...she took off!  She pulled to stand 13 times!!!  No help...no reassurance (she usually likes me to be right behind her, with a finger touching her...not kidding).  Michael and I were dying over her independent determination! Then she started doing squats!  What the heck?!  Since Tuesday, she has been climbing on EVERYTHING and trying to crawl up the stairs.  She'll even stand at the entertainment center for 20 minutes straight!  Did we just get "miracle" tubes?!  Call it coincidence, call it answered prayers, or simply that she needed these tubes to change her world...no matter what the reason, we are so OVERJOYED and GRATEFUL that she has taken off!  Every movement she has done this week will prepare her for walking.  I have prayed so hard that she start walking by her second birthday, and this past week is a testament that ANYTHING is possible!  I wish I could post videos up here to show you all her "mechanical"moves, but still pictures will have to do for now.  I'm so proud of my fighter!

My in-laws were kind enough to send me some chocolate covered strawberries for Mother's Day.  Opening this box of goodies made me soooo emotional!  I'm laughing about it now as I'm typing, but I wasn't actually crying over strawberries.  The mere thought of celebrating my motherhood, or what Mila means to me is something that one day (Mother's Day) cannot fulfill.  There is not a gift, an action, or even a few words that can explain the joy I feel from being Mila's mom!  She is so special to me in ways unimaginable.  We have been given the opportunity to appreciate the little things God gives us through our children.  We have been humbled over and over again.  Our prayers have been answered time and time again.  His grace has helped us endure our toughest moments.  Mila is our miracle baby in a lot of ways....the textbooks say her genetic make-up would leave her in a vegetative, low functioning state.  She continues to overcome and fight through every challenge.  My girl WILL be the exception to 15q24! We will give her the life she deserves to function the best she can!  Its a good thing God is our medicine man :)

Mila Moments

If only there were enough time in the day to do everything I wanted to do, I would be blogging a lot more!  In the midst of finishing up this semester, we're moving AGAIN, and have two trips planned back to back. It wash't great planning on our part, but its how it worked out...so we'll deal with it :). We're staying in Colorado, but moving closer to the mountain.  It'll put Michael closer to work and we'll be closer to all of our favorite spots and trails.  We're excited but dreading the actual physical labor and time involved with moving.  Luckily my mom will be here to help us which I'm really excited about.

Although Mila isn't walking yet I feel like there's been so many little milestones she's crossed!  I haven't been great about writing them down, plus without posting updates on a regular, I'm bound to miss a few.  She's had so many "ah-ha" moments that make us all light up.  I think she even surprises herself sometimes :).

Mila's latest proud moments:

*pulling to stand like a champ!  We position her chair behind her if she is at her pull up bar, on the stairs, or watching a movie.  She uses it as leverage and will literally pull to stand over and over again!  Her squat is almost perfection :)

*she initiates tickle kisses with daddy!  Mila has literally hated Michaels beard for as long as we can remember.  We didn't realize she struggled with accepting it because of sensory impairments.  Now, she loves it and always wants more (he likes to get her sweet spots on her neck).

*she ate fresh strawberries and actually wanted more :)  this kid will not eat a fresh vegetable or fruit so this is a BIG deal!

*crawled up the stairs with minimal assistance!  The first few stair attempts were not so great so we hadn't tried it in a few months.  With an iPad as motivation, she'll jet up the stairs in record time :)

*we got bilateral SMO's to provide her more stability when standing and to help transition to walking.  She hates them!  Next, we'll be ordering her walker to get this girl moving.  I swear she thinks she can stand independently and walk sometimes.  You can see it in her movements and her face.  As soon as it seems she's getting ready to try something new, the determination fades.

*she conquered her 7th ear infection...ugh!  Tubes to be placed May 6th...hallelujah!!

*last week while Michael and I were gone on vacation, her grandma taught her how to hold her arms up when wanting to be picked up.  HUGE!  She NEVER uses her arms for anything unless her therapists or I make her.

*Mila signs "more" all the time!  It was hit or miss most of the time, or we had to do "hand over hand" practice with her so she could realize she would be rewarded by doing the action.  I swear, Michael and I being gone for a week really sprouted consistency with Mila.

*she knows how to give HUGS!! real HUGS!  I can feel her grip when I carry her too! Almost two years of a limp noodle in my arms, and now at 30lbs, it's a relief to have her actually hold on some when I hold her :)

*her cruising is improving...she will take a few steps when standing at the couch.  It's actually really hard for her to lift her legs to take steps.  You wouldn't really understand unless you saw her.  Luckily, she's motivated and determined so I know she'll get stronger everyday!

She Will Write Her Own Story

We finally met with the geneticist, Dr. Saenz, last Thursday.  I had it imprinted in my mind they would want to do a whole work up of Mila.  I honestly thought she was going to be another statistic they would add into their studies.  She probably will be to some extent, but I tried to get as much knowledge through my own efforts.  Hence the dental and vision exams.  Michael kept reassuring me, there was not much more they could do.

Our visit did not take all day...in fact it didn't even take all morning.  They came in with calm voices, smiles, and encouragement.  Our genetics counselor, Kristina, shared with us, the portion of Mila's chromosome missing is actually the the most critical portion.  I believe there is only a few other kids in the 15q24 group that are missing Mila's same portion of their chromosome.  Back when Mila was first diagnosed, I googled her exact chromosomal "loss" number (15q23q24.2) and the info I came across was daunting.  I read it several times over thinking..."this isn't Mila!"  Obviously, Mila has this syndrome...but these kids this article described, were in no way, shape, or fashion, our Mila.  It was that moment that made me realize how blessed we are!  Our biggest medical problem has been recurrent ear infections.  We have had no hospital visits, no medical complications, no surgeries!  How can we not be grateful for these obstacles?  I feel like we can overcome anything!

15q24 microdeletion syndrome is very broad.  There is no black and white.  Meaning, they cannot determine Mila's outcome.  I couldn't have prayed for a better scenario.  I don't ever want anyone telling me what Mila will be like in 5 years, 10 years, etc.  We promise to give her everything we possibly can to maximize her function.  I will fight for her until I can't fight anymore.  She will be the exception!  Dr. Saenz told us, "Mila will paint her own story.  Each day is a new day.  Each day is a milestone."  I seriously could have kissed her on the spot! These words have been my words since day one!  Before Mila was born, I told Michael many times, "I just want Mila to be different."  His usual response, "don't worry babe, if she's anything like her mama, she won't be like anyone else."  Well, Lord, 15q24 syndrome wasn't exactly what I had in mind, but we'll take it.  How right Dr. Saenz is!  Mila will define who she is through our journey.  It is up to Michael and I to provide a life for her where she can grow and prosper.

Our BIGGEST celebration this week.... Mila has taking the initiative to pull up to stand!  This is HUGE for us!  It is her gateway to walking!  For months now, our prayer has been, we want to celebrate her 2nd birthday as a "walker!"  The last 24 hours of motivation and hard work she has put in, lets me know, we are on another uphill climb!  I'm so proud of my girl :)  I love her soooo good!

God's Country...Our view everyday!

Adventures...Craziness...New beginnings...

Where has the time gone?  We've been busy and life has been flying by.  From celebrating birthdays, nursing ear infections, family time, friends visiting, and school (yes, I am back in school), there is literally never enough time in our day.  Michael and I have been so tired for weeks now!  It's not for lack of taking care of ourselves, because we've been working out 5-6 days a week for almost two months.  Not to mention, we eat really well too.  Mila had a weird week of sleep due to three new teeth and an ear infection.  As exciting as "spring forward" sounds,  I swear the time change is kicking our butts!


This week has been nuts.  We have three doctor's appointments, genetics meetings (our first), and therapyx3!  We had a new dentist today so I was a little leary, but he was great!  You know you have a great dentist when he sings The Itsy Bitsy Spider aloud with you to keep your child calm.  It's her favorite song and soothes her every time :).  The dentist informed us Mila has a very narrow palate and not a lot of room for her big girl teeth.  The bottom teeth are starting to crowd, so her last set of baby molars will probably make it worse.  He mentioned teeth being pulled & braces in the near future (not surprised).  She was such a big girl during the first few minutes of her exam, but quickly fell apart when she realized he was going to stay in her mouth for a while.  Wouldn't you?  I have a major dentist phobia!

Showing her pearly whites :)

Mila is scheduled for an eye exam today.  Mostly because I need to know her vision is ok, but also because I want to take as much data with me tomorrow for out genetics appt.  Friday, we'll have another consult for tubes and schedule that procedure.  Having six ear infections in less than a year is five too many!  Mila is likely to have bad allergies like her daddy so we'll continue Claritin daily until we get them under control.

Of course my anxiety is back up as usual.  The week of a "BIG" appointment always has my wheels turning constantly.  My heart has been heavy lately over the fact that Mila has no words.  I'm very grateful she still makes her sweet noises, but some days I just want to hear "mama" or "dada."  I'd even be ok if she wanted to yell "NO" all day :)  It's fun to document new sounds she makes, but all those past syllables we thought she could say, are now non existent.  Speaking with other moms of 15q24 kids, this seems to be a common trend.  Verbal progression followed by digression.  What is with this disconnect?  It's so frustrating.  Although her being nonverbal is a possibility, I refuse to accept that right now.  I have to hope we will hear her sweet voice one day!

We recently honored Rare Disease Day on Feb 28th by rocking jeans all day!  We spent our day at kindermusik and sleeping (she was recovering from her virus).

My bracelet of "hope"

I couldn't resist these overalls!

We've tried to sneak in some family fun when Michael has time.  Recently, we went to an old mining/gambling town, called Cripple Creek, that was having an "Ice Festival."  The elevation was almost 10,000ft and it had snowed, so needless to say, it was COOOOLD!  We had a good time though :)

 

my blue eyed babes

Last week, my friends came to stay with us for a little while.  It was so nice being able to drink coffee and have girl talk with Candace and Jordy.  I'm so thankful I don't have high maintenance friends haha!  It was nice to be on "our" agenda.  They were completely understanding to Mila's schedule too!  We got to do some hiking...check out significant landmarks...hit up the mountains for a day of snowboarding...and have some good girl time.  I wish I had taken more pics...I'm so bad about that.

Since it's taken me all day to write this...I can now say that Mila's eyes /vision are perfect.  Since low tone affects every part of her body, including her eyes, I wanted to know they were ok.  Strabismus has been documented in kids with 15q24 and some have required glasses.  Thankfully, her optic nerve and all her reflexes are adequate.  No sign of glasses needed during childhood!! I know some people might think having all these exams aren't necessary, but if something is "broke," in a nonverbal/developmentally delayed child, we won't know if anything needs "fixing."

Latest of Mila's "milestones" we've celebrated:

*Climbing over obstacles with and without initiation

*Doing a ton of tall kneel standing and even walking on her knees

*Standing whenever someone can assist her...she can't figure quite how to pull up to standing.  It's not for lack of trying, but something isn't "connecting"

*She's getting really good at sorting shapes

We did a "simple" evaluation that puts Mila on developmental scale by age.  Some questions we couldn't quite answer, but as of now she is approximately on a 14 month gross motor scale.  Since standing independently and walking were included in several questions, she obviously couldn't get credit for any of them.  Fine motor scale is on a 16 month level.  She'll be 20 months on the 16th, so we're still somewhat behind.  I'm confident we'll continue to keep moving forward and she will become stronger everyday!  We rejoice in the fact that she's happy and healthy :)

"Well, you can't never let anything happen to him. Then nothing would ever happen to him."~Dory (Finding Nemo)

Mila has been obsessed with Finding Nemo since she was six weeks old!  Partly because we chose it to be her entertainment during our trips to NY and PA.  She could care less about Baby Einstein or any other "baby" oriented videos.  How could you blame her?  Bright colored, fast moving, funny sea creatures with the BEST story line!  Obviously she doesn't get the story line.  However, she lights up in a way that's unimaginable!  She shrieks joy and dances non-stop.  She actually laughs at the appropriately funny moments.  She watches it from beginning to end.  Mila WILL have a Nemo birthday party this year!

We got to visit the Denver Aquarium yesterday for the first time.  Is there ever a good day to take a road trip when their teething?  Mila hasn't slept well in weeks, and missing nap time could potentially pose disastrous for us.  Her canine teeth have begun to come in and they are devilish!  Mila is a ridiculously good baby, so when she is unhappy, it throws us all out of sorts.  Does teething ever end?!  She's way ahead on the teeth curve, but I would be totally happy if she slowed down.  

Can you sense her enthusiasm?

Michael and I had not been to an aquarium in years, so we were excited.  The reviews of the Denver Aquarium were mediocre, but we didn't let that deter us from having a good time!  We saw all kinds of creatures.  You could even touch starfish and pet stingrays.  We opted out of those because there were a few classes of crazy kids there.  Man was it LOUD.  Mila couldn't hang & in midst of all the noise, somehow fell asleep halfway through.

The sea life in Finding Nemo is depicted as real life on the ocean bottom, so seeing all the creatures characteristics up close was fun for us.

Is it summer yet?  Mama is looking mighty green!

I was so sad because she missed her favorite fish of all!!! I couldn't even share my excitement when we found Dory, Marlin, and Nemo in the sea anemones.  

Despite the crankiness, napping in the middle of the "fun," we had a great day being together.  Michael had his first day off after working 12 days in a row.  It becomes difficult at times because we all wish he were home more.  Not having a circle of friends poses its own difficulties, but thankfully we have each other!  Have I mentioned before I have the most amazing girlfriends?! Face Time, Voxer, texting, and phone calls make me feel like I'm right at home.

Along with the aquarium being one of Mila's "firsts," we've celebrated a few other "firsts."

~Mila can pull "See-n-Say" lever down...something we've been practicing for a while (cause and effect is really exciting for us)

~Mila is crawling upstairs with assistance (she would rather stand than stay on all fours) "Saftey 101"

~She has just begun rambling more and more.  Nothing makes sense of course.  Two of the syllables are "ra-ra" and "la-la".  SAY WHAT?! Out of all possible syllables, she chooses two of the hardest!  I love my girl :)

~She can pop bubbles in between her thumb and index finger (which is universal sign for "pop").  Mila always finds a way to utilize her fine motor skills when her gross motor is lacking.

~With encouragement, Mila has begun to crawl over things (pillows, boxes, our legs).  Her biggest obstacle at times is herself!  Fear of the unknown.  With guidance and even cheering (yes, I mean full on, loud "whoop-whoops"), Mila becomes very brave and almost impulsive :).

~She stacks blocks with us instead of knocking down what we build

~She can match up shapes with the sorter and will actually drop them in (before she would match up shapes, act as if she was dropping them in, and quickly pull them back out).

~It's the little things~