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~

A tribute to special needs moms

A mom in our 15q24 group shared this video.  Grab a few tissues or twelve.

My Heart is Full

You are my sunshine, my only sunshine

You make me happy when skies are grey

You never know, dear, how much I love you

Please don't take my sunshine away

Today was our first day of Kindermusik for the semester and we were ready!  Well at least I was.  Its been about two months since we had been and a lot has happened in that time.  I was anxious to see how Mila would adapt with new kids, her teacher, to the social environment we once knew.  Mila has shy moments where she will tuck her head between her legs.  She remains happy even though she feels unsure, and within seconds, she'll sit back up with a huge smile on her face!  Well, that is exactly what Mila did when we walked through the door today.  I sat her down in the entrance to take my shoes off, and she folded over like a grilled cheese sandwich :).

My expectations were not that high for today.  I honestly thought Mila would be clingy, apprehensive, and definitely wouldn't show off her crawling.  Next time I won't allow my expectations to be lower than awesome!  As soon as we walked into the packed classroom, Mila took off.  She was crawling EVERYWHERE!  She kept a huge grin on her face as she weaved throughout the crowd.  Mrs. Lisa looked up to the moving object and her jaw dropped!  She couldn't believe Mila was mobile in the few short months she hadn't seen us.  Mrs. Lisa was ecstatic and cheered Mila on.  The other moms were clueless to our celebration, but we didn't hold back our joy.

She did not stop moving the entire time!  I let her explore to her hearts content.  She would check in with me by eye contact every once in a while.  Her defense skills were totally appropriate as well.  If a kid tried to get in her way, she gently let them know she was there and she wasn't moving.  If someone tried to snatch a toy or book from her, she gripped it just right to maintain possession.  She continues to get stronger each day.  She stays motivated.  She is so happy.  One might not think to celebrate these moments, but we do.  I haven't felt this kind of joy in so long!  I am so proud of our big girl!

The Love of My Life

He's a gentle soul.

He is the kindest of kind.  

He is honest.

He has a full heart.

He is a Godly man.

He is a family man.

He is my sound mind.

He is my voice of reason.

He is my best friend.

He is my super HOT best friend :).

I could not survive without my sweet, handsome Michael.

I couldn't write about our story and not bring attention to the one person who makes everything possible.  We fell in love fast, started a family early, experienced a lot of adventure, and feel as if we have already lived a lifetime together!  Our relationship has seemed effortless since day one.  We are different as much as we are alike.  Of course we have our struggles that we work through, but we talk about EVERYTHING!  Our lines of communication never waiver.  We hold each other accountable and are able to resolve difficulties in a loving way.  Michael has never raised his voice!  In fact, I don't think he could, even if he tried.  He is literally the nicest guy you will ever meet!  He manages to find the good in everyone and everything.  I wish I could be more like him :).

We were completely surprised with our pregnancy of Mila, and despite my initial shock and fear, Michael was elated.  He hugged me tight and told me we would be ok.  Despite our fears, our little one would be loved more than anyone.

I experienced latent post-partum depression when Mila was about three months old.  I have never been so emotionally confused in my entire life!  Fear, anxiety, and thoughts of wanting to harm myself were quickly breaking me down.  I was questioning my ability to be a mom.  After a walk one night, I fell to the floor in tears.  How do I tell the man I love that I don't feel happy when I have everything wonderful I could possibly imagine?  Once again, he wrapped me in his arms and assured me we would get the help I needed no matter what it took.  He expressed his love for me.  He kept me close.  I was able to get help, and within a year I successfully weaned myself off Prozac.  My history of anxiety still resurfaces when there are new findings with Mila, but I have been able to endure through prayer and the love of family and friends.

Our move to Colorado seemed to happen overnight.  Mila was sick right away with croup and bilateral ear infections.  I was busy planning her first birthday back at home.  If it wasn't for Michaels dad and uncle, our move would have been a lot more difficult.  Our trip home came and went.  Back in Colorado, Michael was busting his butt at work, Mila was getting evals, and I had no clue what I was supposed to be doing.  I was satisfied with being able to be home Mila during her first year, but I was ready to focus on myself.  She began preschool and I searched for jobs that could accommodate Michaels schedule.  13 resumes and four applications later, I had no luck!  I even tried to pick up a travel assignment near Denver just to have a second income.  I couldn't even get ONE interview!  I was literally being denied interviews because I don't have my Bachelor's in nursing.  Are you kidding me?  I have a nursing degree with almost five years of experience, but they preferred a new grad with a Bachelor's.  Clearly, we did not know this before we moved.  I was beyond frustrated!  I wanted an outlet.  I wanted to meet people.  I wanted to contribute to our family financially.  No matter how many times Michael assured me I was doing the BEST job for our family, it never seemed like enough.  I didn't want motherhood to define who I was.  

It wasn't until a month or so after Mila began therapy that I realized I was exactly where I am supposed to be.  Watching her struggle week after week from the shear pain she felt while performing the simplest of movements, I couldn't leave her.  She needs me.  She depends on me.  I am here to encourage and teach her.  Mila's therapists give me the tools to help her progress each week.  I reached a point where a peace came over me.  We encountered some struggles for my path to shine.  God showed me in very small ways that I am meant to be home with Mila just a little bit longer.  We are so fortunate that Michael's job allows me to be with Mila everyday!  Michael has never pressured me to work.  He encourages me to do whatever makes me happy.  If I chose not to do nursing and want to pursue another passion, I have his full support.  Oh, how I love this man, and boy does he love his girls!  I don't deserve him, but how blessed we are to live life with him!