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!

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 :)