Friday, January 31, 2014

A tribute to special needs moms

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

Tuesday, January 21, 2014

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!

Monday, January 20, 2014

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!  

Sunday, January 19, 2014

15q24 Microdeletion Syndrome: We Will Not Let Fear Overcome Our Joy

I come from a family who's attitude has always been, "if we don't know, it doesn't exist" or "if you can't see it, it doesn't exist."  It drives me nuts!  I don't like to be in the dark.  The more I know, the better prepared I can be.  Throughout all of our doctors appointments, blood work, other testing, I told multiple friends and family I would be really surprised if "something" didn't show up on her genetics panel.  After all, how could Mila be so developmentally behind without reason.  Granted, would any diagnosis change our plan of care?

On January 8th, my phone rang.  As soon as I heard Dr. Spees identify herself, I knew she was calling to deliver news we might not want to hear.  "Something showed up on Mila's genetics test that I would like to discuss with you and Michael.  Unfortunately, I don't know anything about it, so I'd like to do some research before we talk about things."  She informed me I could call the front desk to schedule.  Did she think our conversation was over?  "Well, I can't get off the phone until you tell me what abnormality showed up," I replied.  She goes into a discussion about the 15th chromosome...a partial deletion of the "q" doesn't have a name...base pairs...blah, blah,'s known right now as 15q24.  I don't even think we had hung up the phone before I was googling to find some truth.

I was sad.  I was not relieved.  I texted Michael immediately.  For a second I thought, it might have been better not to have an answer at all.  Is this microdeletion really going to change anything?  Awaiting Michaels phone call, I couldn't find any concrete information that bled black and white.  There's maybe 30 cases known in the states.  The spectrum was so wide.  Where will Mila fall on the spectrum?

I came across an article written by a non-profit organization called Unique:

It provides basic information that most can interpret.  It still wasn't black and white.  The spectrum remains very broad.  We have no idea what Mila's outcome will be.  We have our concerns with her speech delay and what her IQ could potentially be.  Will there be frequent vision, hearing, and dental visits?  Will she need a cardiac work up?  Is she at risk for seizures?  Letting everything sink in for a few days, I felt as if our new knowledge was taking away from the happiness we had been experiencing for the last few months.  Her genetic deletion isn't life threatening.  She has a full life expectancy.  Michael and I have never said "why us."  We have never felt sorry for ourselves.  If there is one thing we do feel, it is sadness for Mila.  We are sad that she isn't developing like other kids her age.  We are sad she could be viewed as "different."  Mila is a special soul.  Without her delays she would still be "different" because there is only one Mila!  She is a girl of many quirks and characteristics that set her apart from anyone else, and she is ours!  I WILL NOT let our fear of the unknown continue to strip the joy that Mila brings to our lives.  If I continue to dwell on the negative, I won't be able to enjoy what really matters.  I could not be any happier then where we are now and where we've come from!  My baby is motivated, stronger than she's ever been, and happy as can be!  

I was fortunate enough to come across an organization called, The Global Gene Project.  They bring awareness and support to all those dealing with genetic disease.  I submitted Mila's story to them with eagerness to become aware for myself, and also become involved with their movement.  The staff who has replied to my emails have been nothing short of wonderful!  They provided me with support group info, a contact name and number of another mom, and had Mila's story published in less than a week of submitting it.  Check out the great things The Global Gene Project is doing!

Mila Fights 15q24 Microdeletion Syndrome

Story Hero: Mila J. Young
Location: Colorado Springs, CO, United States
RARE Condition: 15q24 Microdeletion Syndrome
Limp noodle, lazy bones, Mila bird, noodle bear…those were just a few nicknames we had for our sweet baby.
She loved music. She loved being talked to. She loved to be loved. Her head bopping received attention everywhere we went. It was her personal dance move. Once she could sit on her own, that is all she did.
Absent speech, crawling, walking, rolling over, brought grave concern at one year old. We sought early intervention and have been receiving amazing care from our therapists for almost four months. At almost 18 months old, my daughter, Mila, is just now beginning to crawl.
She doesn’t talk, but she makes the sweetest, most beautiful sounds. Her blue eyes sparkle for miles, and her smile is electrifying! After an MRI and a lot of blood work, her genetics panel came back with an abnormality called 15q24 microdeletion syndrome. What the heck does that even mean?
Unfortunately, it is a new found disorder that does not have a lot of supporting evidence. The spectrum of quality of life is so broad, we might have unanswered questions for years to come. It will be many months before we can meet with a genetics team.
I do not know where to even begin.
I need more answers.
I need more evidence.
I want to be involved.
I want to talk to other moms fighting this same fight.
I need to give Mila the best quality of life possible.
I will fight for her until I take my last breath. We have to fight. If we don’t, who will?

Friday, January 17, 2014

Celebrating 2013 All Year Long

The holidays were bittersweet for us this past year.  Although Mila and I got to go home before Christmas, our holidays were celebrated here in Colorado with our party of three.  Michael's job didn't allow much time off to eat and be merry, but we celebrated 2013 in a much bigger way!  We didn't go "gift" crazy because we were so thankful to have a happy, healthy, and much more engaged baby girl!  In three short months, we have been celebrating what most take for granted.....

~giving kisses
~"sharing" toys with mommy and daddy
~good posture while sitting
~drinking from a sippy cup, and now a straw cup
~crossing body midline to reach for a toy
~rolling continuously on the floor
~self-feeding with a spoon
~exposure to different textures to discover likes and dislikes
~bear weight on hands and knees
~turn pages in a book
~identifying objects when given a choice between two
~army crawl to regular crawl
~overcoming fears of swinging, sliding, bouncing on yoga ball, being turned upside down
~pulling up to "tall knees"
~standing with assistance
~sign "more," "ball," and "please"
~sit up from lying down
~purposeful play
~mechanism of pushing and pulling

We had so many BIG moments happen for us in such a short amount of time.  We continue to celebrate each and every one while working on "our" next milestone.  We are forever thankful and humbled for what 2013 gave us!

Early Intervention

I wish I could really express how special Early Intervention is to us, but there are not enough words.  When I think of where Mila was physically, she has come so far!  In the beginning, Sarah, her PT, made it very apparent that Mila's motivation would be a huge factor in her progression.  Let's just say, for my child whom has never gone after anything out of arms reach, had a lot of work to do!  Mila has never been dependent upon anything but me.  She's never been attached to a stuffed animal, a blanket, a sippy cup, sucking her thumb, or a favorite toy.  While that has been nice in some instances, it hindered her development.
Before Early Intervention
3 months after starting EI

The difference between these two pics speaks volumes!  The pain of holding her head up, fear of the unfamiliar, and limp arms because she wasn't strong enough to support her weight through her a pleasant girl, who can roll a ball, while supporting herself through her elbows, on her tummy!  I almost cry as I type.  AMMMMMAAAAZING!

You would be surprised at her motivating factors.  As much as she loves music, I would've thought any musical toy would get her moving.  Don't get me wrong, they have helped during some of her therapy sessions.  What really motivates my girl are BOOKS!!  As a non-lover of books, I hope this is one of her loves that never dies!  Her smarty pants daddy doesn't like to read either, so he concluded that two negatives made a positive :).

 Her PT and OT have been visiting once a week.  In the beginning I wondered, how the heck is Mila going to progress with therapy only once a week?  They come into our home in hopes that we will continue the skills she learns each week.  Mila has been on a gradual uphill progression since we've began.  They warned me a month ago that she will plateau for a short time, but our pace should pick back up.  Luckily we have been blessed with a continuous climb thus far.

Wednesday, January 15, 2014

I've Got Nothing, but Time

Why is it when you feel like you have nothing but time, it's during the moments when you feel the weakest?  How were we going to patiently wait six weeks for Dr. Spees to tell us whether or not Mila is autistic?  If it wasn't for Michael or my amazing friends back at home, I would've had a lot more melt downs!  My dearest, Amanda, sent me several prayer books written by her mother in love, Sheri Rose Shepherd.  Those books saved my sanity and my heart.  I'm not a "churchy" girl.  I pretty insecure when it comes to talking about religion, beliefs, etc.  However, I do believe in God.  I believe in the power of prayer.  I believe in the ability to forgive.  This was a moment in my life that I needed to pray harder than I ever have before!  This was also a moment in my life that I needed to let go of self blame.  These are some of the women in my life who uplift me, support me, and love me for me.

I cried on and off for weeks awaiting this BIG eval.  Any trip to the park where a kid Mila's age or younger was running around, yelling "mama" or "dada," set off my waterfalls.  Michael had a hard time understanding why I was so upset over things I couldn't control.  I had a hard time understanding why he didn't understand.  As a new mom, you wait for those kind of moments.  The moments when your little ones say your name, run up to hug your neck, respond in conversation, etc.  It was never about control.  I just wanted to experience the sweet moments that most of the world gets to enjoy with their kids.

I'll keep this part short....after a two hour eval, Dr. Spees did not think Mila was autistic.  Even though Mila is still pretty young, her eye contact, happy spirit, and social skills were enough to rule it out.  Michael and I kindly requested basic blood work, and MRI, and genetic testing to eliminate causes.  Dr Spees was concerned with the laxity of her belly.  She thought her liver was slightly enlarged and she could palpate her spleen.  We got a belly ultrasound and her spleen was 1cm larger than it should be, but provided her blood work was normal, we would not be too concerned.  Mila's iron was low, but otherwise, her blood work was normal.  MRI negative!! Praise God!!

Two Steps Forward, Three Steps Back

The team from Early Intervention were concerned that some of Mila's difficulty could be sensory related.  Thankfully they initiated a occupational therapy consult so within a few weeks of beginning PT, we started to link some missing pieces.  I never realized how one little body could be so confused.  Her head bopping (that we love so much) a.k.a, her happy dance, the inability to bear weight through her limbs, fear of being off balance, unfamiliar movements while being held, flinching when things move towards her, the dislike of having her hands or feet held, are a handful of sensory deficits that she has struggled with for a long time.  Mila was completely unaware of where her body was in space, and she compensating by expressing fear when put in those situations.

Maria, her OT, gave us a few techniques to help Mila become aware of her body.  Brushing and joint compression were two key factors that connected Mila's body awareness and ability to bear weight through her limbs in a short amount of time.  Below is a brief explanation from the National Autisim Resources website, of how these two simple techniques, can completely change a child's function.

Tuesday, January 14, 2014

Let Our Milestones Begin

As we all know all state funded programs take forever to get started.  After our eval with Early Intervention the first of August, we had Mila's first physical therapy appointment September 3rd.  Of course all therapies begin with Q&A sessions so it took a few weeks before we actually began the dirty work.

Mila's therapist, Sarah, wanted to start with the basics.  She watched how she reached for toys, her ability to rotate.  She noticed Mila didn't bear weight on her hands, and if a toy was past reach, she would move onto something she could actually grab.  Sarah works with Mila once a week, so like clockwork, I was always eager for her visit.  During one of her first sessions, Sarah attempted to put Mila on hands and knees.  Mila was crying and being resistant to her direction.  It was at that moment that I realized, Mila's "lazy bones" were not the reason for her inability.  She was crying and being resistant because it was painful.  She was frustrated because being on hands and knees is THAT hard.  As she continued to cry, I began to cry.  My baby really couldn't do the simple things that's so easy for other kids.  September seemed like a slow month.  Being with her everyday, it is hard to see a lot of progress.  Regardless, she always had a big smile on her sweet face.

Mila's love for music never fades.  We signed up for Kindermusik and it was one of my BEST decisions yet!  Mila is in her happy place when she is surrounded by music and dance.  Not to mention, her teacher, Mrs. Lisa is amaaaaazing!!!

After several attempts to wean Mila from breast feeding, she had several ear infections that set us back.  Her dad and I were really worried she would be hard to wean, but when Michaels parents came to visit, I thought they would be the perfect distraction.

If you ever want to see Michael in his element, put him and his dad in a room together!  They're pretty much the same person.  Gentle and kind in all that they do.  Politics, guns, outdoors, quick fixes, health....just a handful of things that keep those two talking for hours.  Mila was fortunate enough to inherit her Papa and daddy's blue eyes :).

Monday, January 13, 2014

Reflections of Mila's First Year

It's always nice to reflect upon a time when everything seemed perfect.  A time when we welcomed our Mila James into our lives.  Labor was intense, her delivery was stressful, and the first five minutes of her life seemed like years.  Luckily, we had a great delivery team, and with a few respiratory interventions, Mila got to snuggle with her daddy and I.


Mila was 6 lb 4 oz of pure, tiny sweetness.  We were surprised how tiny she was considering both of our families breed baby beasts.  Thankfully Mila was a great eater and my milk supply was overflowing.  Her well visits were proof that she was growing so fast!

After being told Mila had low muscle tone and she was six months behind developmentally, there's so many moments from her first year that came flooding back.  She hated tummy time.  As soon as she could sit up on her own, she only laid down because she was unable to catch herself.  Her arms always stayed limp by her side.  She would never grip my waist when carrying her on my hip.  Mila rarely took pictures with her tongue inside her mouth.  She has bopped her head since she was strong enough to hold it up.  Whether it's music, her favorite show, wagon rides, playtime, anything, or anyone that excites her, Mila's head is always moving side to side.  She never rolled on the floor continuously.  It was only from her stomach to her back after I encouraged tummy time.  If toys were out of arms reach, she would find something else to occupy her attention.

I grieved for several months after meeting with Early Intervention.  I was angry with myself for possibly denying Mila of great things.  I have also realized that during her first year she was happy and healthy.  She slept and ate great.  She was always engaged with her dad and I, and sociable with those around her.  Those are the vital components that every parent looks for in their child.  Her pediatrician never gave me any inclination that something might be wrong.  We trust our doctors.  Most importantly, we trust our instincts as parents.