Our Gentle Giant Turns Two

We just celebrated Mila's second birthday!  I haven't had time to blog because we've been too busy with our gal pals.  Sarah, Elaina, and Na Na (Sarah's mom), came to spend a week with us!  It was so special for them to be here while we kicked off Mila's birthday week.  We didn't do a lot of touristy stuff, but we had tons of coffee talk, laughs, and great food.  In fact, Na Na cooked for us on Mila's birthday...BBQ pork chops, stewed zucchini and squash, fresh string beans, corn on the cob, cucumbers/tomatoes in vinegar, and southern style country cornbread!  Are you hungry yet?  Michael and I were loving some southern cookin' :)  There was very few moments that Sarah and Na Na were not cleaning, straightening up, cooking, playing with the girls.  Elaina was OBSESSED with Mila!  Not kidding.  From the time she got off the plane, she called Mila's name 123,536,254,274 times a day.  She had to be kissing, petting, hugging, touching, or playing with Mila during every waking moment.  It was by far the sweetest week we have ever experienced.  The girls played so well together and knew exactly when to break away and play by themselves.  We were so sad to see them leave.  I want to live with them forever!

Even though this past year has been extremely hard, it's also been amazingly joyous and empowering.  My Mila is stronger than anyone I know, and she continues to overcome any obstacle placed before her.  Her hard work never goes unnoticed in this house :).  In preparation for planning her party, the theme was obvious!  I didn't want an extravagant party, but I did want her to have the biggest, baddest, NEMO cake possible!  I was fortunate enough to be given a name of a local woman who has a cake business.  I sent her an email of exactly what I wanted.  She called me immediately and said not only could she do it, but she was excited about doing it!  I'm pretty sure she spent a solid week just making the characters that would ornament the cake.  We invited her therapists, their kids, and a little boy from her kindermusik class to join in our celebration and cake fest.  They all showed up and made this year even more special!

We established care with a new pediatrician, Dr. Bagnall, whom I think I'm really going to be pleased with.  She was eager to refer us for a few needs I spoke of and gave me her email address to contact her at anytime.  We went in for a quick well visit.  It's been so long since Mila has had immunizations so I didn't want to rock the happy boat :)  However, she did weigh 28lbs and was 36.5" tall!  She literally grew 1.5" in a month.  Needless to say, we have nicknamed her our "gentle giant."  Although she looks like her daddy, I think she managed to snag the "tall" gene from my side of the family :).

Mila continues to work on walking with assistance, cruising, and purposeful play.  We still have a lot of work to do, but we are hopeful that Mila will continue to progress and persevere! PS...there is a Global Genes Project Summit in California in September, with focus on "Empowering Patient Advocates to Become Successful Activists," and I get to attend!! I'm so excited about meeting new people, tapping into resources, and building networks of strong families who fight the struggle everyday!  

Mila's Sparkle Becomes Noticed

I have been thinking a lot lately about what I can do here, in Colorado Springs, that can benefit kids like Mila. It's hard for me to know where to begin to get my ideas moving.  We don't have a huge friend circle established here in CO, so networking is grim.   I recently learned that there is only ONE park here, in a town of 600,000 people, that has a park with universally accessible equipment.  Seriously, one.  Not to mention, it's a park we don't feel safe at.  The universally accessible equipment is great for kids and adults with disabilities.  So, why is there not more in our city.  Before I go charging into the next City Council meeting, I discussed my burning desires with her kindermusik teacher, Mrs. Lisa, hoping she could shed some light on my heart.  Long story short, she supported the direction my ideas could go, and said it very simply, "we need to create a Caring Community."

It's only been a few days since we spoke, and this morning I received this email....

Were your ears burning this morning? I was thinking of you and Mila while I was watching Good Morning America. 
There was a lovely piece about a 12 year old girl planning a fundraiser to support a special Olympics type program in her town in West Memphis. Long story short... She has had a best friend since kindergarten who happens to have special needs. She is an aspiring singer, has written a song for him, and is now putting on a benefit concert in, I think, New Jersey to raise money.
The takeaway I got from this reminded me of our conversation yesterday, and I thought it might warm your heart too. Without her friend's gifts, would that girl be where she is now? Without her gifts, would her friend be where he is today? Mila will inspire so many children to be kind and compassionate. She will inspire them to go on and be singers, doctors, volunteers and teachers. They will be thoughtful of others because of her. These are all traits that can not be learned from a text book, they have to be inspired by others. In turn, Mila will have many friends, and have more of an innate love of learning because of her friends' behaviors towards her. She will have an important place in the world. 
I enjoyed this little girl's story so much, and I hope you did too. I think the whole story is on the GMA website if you are interested. 
Hugs to you and Mila today, Lisa

I could barely get through the email because my eyes were drowning in tears.  Happy tears.  Tears of Hope.  Our worst fear is that Mila will be outcasted for her differences or shunned because her quirks will be unaccepted.  Mrs. Lisa's words were exactly what we hope for people to see in Mila.  They were exactly what we pray for.  It's words like these that make me so grateful for our journey, although we may not understand His plan.  It's her words that make me so proud to be Mila's mom!

Let Us Hold On, Just a Little While

15q24 is a trickery little monster.  It's not just speech or sounds that become lost, but certain skills can slowly fade away. Something as simple as grabbing the spoon with food on it and feeding herself, is something she hasn't done in a long time.  No matter how many times I ask, no matter how I ask, she won't take the spoon from me.  It's a little disheartening, but I feel with time, she could gain that skill back.  I know she has the physical capability to grab the spoon and put it in her mouth, but something in her brain is not allowing her to.

Tonight, dinner consisted of Mila chowing down on a cheese quesadilla and fruit, while Michael and I sat at the table chatting about random things.  Mila hasn't eaten real fruit in FOREVER...so for her to go for the first bite was a big deal!  Such a big deal that I prompted a "high five."  I usually do hand-over-hand guidance for most things, prior to asking her to doing them independently.  So, I guided her through "high-five" a few times before asking her to do it.  I held my hand up, asked her for a high five...she looked at my hand, looked at me...and ever so gently touched her hand with mine.  Michael and I clapped and cheered so loud!  Mila's excitement level grew with her head bopping, lots of squeals, but you could tell she had no clue why we were so ecstatic. Hahaha!  I thought for sure we had scared her out of any more "high fives," but my girl gave me a couple more as soon as I asked for them!

It's these little moments that make us so proud to be her parents.  We cheer loud and obnoxiously because something as simple as a "high five" is a big milestone for us.  We scream and clap like hyenas because we don't know when we'll get to again.  These moments are special and we'll hold on to them as long as we can.

Look who's turning two next month....

Serenity Sucks

We have literally packed/unpacked five times in the last month, whether to go on a trip or move.  As much as I like to travel, we are on a much needed break from doing any packing...and the next time we move, it will be to our permanent residence AND we will pay someone to move our things!  I definitely have to praise Mila...she is the BEST kid to travel or move with.  Even though I notice changes in her abilities and skills when were constantly out of routine, she never fusses!  She's a super chill girl.  For that, I am so grateful.

So, here we are, back in our groove.  All family who have visited are gone, no major trips planned, and we're resuming our schedule.  The schedule that now consists of therapy 4x a week and random doctor visits.  Mila recently qualified for Speech water therapy.  Yes, speech therapy in a 90 degree salt water pool, 30 weeks out of the year!!  She also gets an office session once a week too. Unfortunately we had to "break up" with our in home Speech therapist, but after reading the history of Katie Blehm and her reputation of success with speech water therapy, I had to give it a chance.  They incorporate so many motivating factors for Mila.  First, being water.  Second, being iPads in the pool.  I mean, seriously.  Who wouldn't love a 90 degree pool with iPads!
They have 4-6 assistants in the pool each session so there is plenty of attention on Mila.

I have no idea when Mila will start to respond to Speech Therapy, but Mila's doing really well with her standing, cruising, and even walking with her walker.  Even if she isn't consistent with these functions, she has her moments of surprise.  Such as, walking with her walker by herself for a full minute!  Wish I knew how to post the video.  It's awesome to watch.  She's awesome.  I'm so glad she continues to progress no matter how big or small.

Now that we're back at home, doing our thing, monotony sets in pretty fast for me.  As much as I love being with Mila, and as hard as I try to be patient with her milestones, it becomes exhausting.  I'm with her all the time so it's hard for me to notice changes in her.  I have to continually pray for patience...literally all day, everyday.  I have moments when I want to scream.  I have sad moments of wishing she would walk or talk.  Then I'm humbled by a mom we meet who's teenage son with a syndrome unknown has never said "mama."  Talk about a gut punch and tears.  I can't imagine.

She will get to start pre school in January which I'm really excited about.  Sometimes I feel as if I'm not enough for Mila.  I really think she would thrive better if she could spend time with others and I could be a better mom if I was involved in other things outside of the home.  It seems like I'm always pushing back "my" start date.  My start date of work, consistency, socialization.  I'm constantly pouring myself into Mila and pushing my needs to the back burner.  Thats why serenity sucks.  As we resume our normal routine, it means, I go back to being mommy and caretaker.  I would like to be less care taker and more mom.  I need to be a great mom...not just a good mom.  So until January rolls around, I'll continue to beg & pray for patience. You can join me if you want.  I need it.  Mila and Michael need it.

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!