Blood Test Results

I (Aubrey) received these results (determining whether I'm a carrier of Becker's or not) a little while ago, but have not posted because there is a lot of emotion attached.  (and I am still editing this post weeks after starting it)
    I am a carrier of Beckers Muscular Dystrophy.  My mother is also a carrier.  My family is being further tested to figure out where exactly the gene mutation started.
    What does this mean?  It means that Harper will be a carrier as well as my two sisters.  If and when my sisters have children it is my prayer that God spares them the pain of ever having to hear "your son has Beckers MD."  This is a very rare form of MD and the Dr.'s we have seen have not followed cases of Beckers.  For now we live and enjoy and we'll update when we have news.
    Thank you for prayers!
P.S. If you happen to see a fundraiser for MD give!  It is amazing how our "little" can be made into a lot.

Harper Turns 1!

October 31, 2011 Harper entered the world (@ 8:56pm, Owen was 8:44am...I tried to push her out on 8:44, she's stubborn!) and this past year we've enjoyed her spunkiness.  We had a BIG celebration!

I do have to admit though, just as with Owen, I mourned for myself at the loss of my "baby."  I do not know if every mom feels this, but that's it...they are only babies for a short while!  I am thrilled to see what this year brings.  It has already brought her first tooth, which popped through (FINALLY) yesterday!

A few of Harper's favorite things:
* Swings
* Sliding down slides head first (by herself!)
* Eating sand
* Eating (in general, everything and anything)
* Music
* Blankies
* Bath time
* Laughing like a sheep
* Playing peek-a-boo

mmmmm...did she enjoy these!!! 

she loves to drive!!!

and brush her teeth!  

what a great day!  Thank you God for blessing me with two beautiful babies and a wonderful man to share them with!  

in lala land

Where oh where have we been?  Since becoming a stay at home mommy...I now squander my "free time."  Amazing how time flies when you're having fun!  We sure do have a lot to update.

DAVIS
Davis is...pretty chillax.  That really is the best word I have to describe it thus far.  People are friendly, the environment is pretty (not to mention cool), and there's a lot of fun stuff to do with the kids.  The first whole week we were here Owen woke up every morning asking "go to the park?"  It is literally 5 or 6 houses down, and HUGE...kinda hard to say no.  So, we venture over to the park daily, sometimes two and three times, even in the dark!
    Some of the great things about Davis so far: 1.  Park  2.  We ride our bikes everywhere, even to Church!  3.  Kid friendly (seriously great)  4.  Yummy local food...great pizza, thai, and other places to eat  5.  Awesome downtown, farmers market, and local events
    Yaya came for a visit and we had a blast!  Check out the pictures!  We welcome all visitors :)  Owen and Harper are growing up so fast, and enjoying every minute!

KIDDOS
Owen got a major haircut!  (As did Aaron and I).  He is learning Davis language "park, downtown, train, tunnel, Co-Op and Nugget (grocery store), and a new favorite Frozen Yogurt."  After pretty much stalking the park daily for people Owen has made friends this week and is starting to play with kids instead of mommy!  Owen has been riding a two wheeler for a little while now, which is so much fun.  Other than two year old tantrums and fits he seems to be pretty healthy and happy.  Night terrors have started up again, even in the day time...prayers for restful sleep are appreciated!  They are still unsure if any of it is related to Beckers, but hopeful that it's not.

Harper has been walking for about two months now and she's flying!  That girl sure is determined.  Her favorite things at the park are walking up slides, swings, and a springy horse.  She still has NO teeth!  Amazing!  However, she sure can devour some food.  She eats all table food, except cottage cheese.  She is starting to answer questions, usually with a nod or "yah."  Yaya taught her how to shake her head No!  She loves playing on bikes, push cars, or anything that has wheels.  She just got her first helmet for our bike trailer and is adorable in it.  Oh yeah, Harper will be one on Halloween...I cannot believe it.

Both kids started going to BSF with my on Thursdays (Bible Study Fellowship) and are meeting new people, and experiencing new things.  They love being outside.  We are working on a schedule, and trying to get them both to nap at the same time...which is so nice when it happens!

Here's some recent pictures...enjoy!

Owen playing in the backyard...with long hair!

Owen and Harper wearing aunties beanies :)

Harper and Owen 

Yaya, Emma, and Harper

Too cute!

Oh yeah, thanks cousins!!!

Always putting on a show (Owen received this guitar from his Big Bear class as a going away gift.  It is a beautiful reminder of how we will always be connected, and how important music is!).

Learning to rock, like her brother!

Movin' on

Owen update:
*Geneticist says she's very encouraged by Owen's diagnosis, results, and prognosis.  We will not need to see the neurologist or seek help until we see symptoms arise.  They predict at least til' his teens!  We are so hopeful and encouraged after seeing them.  Neurologist consultation is scheduled for October, we'll keep you posted.  Meanwhile we're just living our lives to the fullest and trying to give Owen the best childhood we can.
*I (Aubrey) had my blood drawn and it's currently being tested at City of Hope.  We are trying to find out if I am the carrier.  We will know in 3 more weeks.

Owen's a happy and healthy 2 1/2yr old

Big News:
We have, upon MUCH thought and consideration, decided to move our family.  For many of you reading this it may seem sudden and out of the blue, but it has been on our hearts and minds for a year now.  We wanted to move last year, but with the news of Owen's diagnosis we decided to stay close to family.  After Owen's second and final diagnosis we felt the door of opportunity opened again.  A week from tomorrow we will (if all things work together) be packing up and heading out.  Where to you ask?  Davis.  We have been visiting and visiting and visiting...and the more we're there the more we want to stay.  We enjoy the relaxed small town feel where people are intentionally aware of their environment, children, and relationships.  We  have decided that Davis would be a wonderful city to raise children in.  With me staying home, and Aaron available on his 4 days off, we will be able to provide our children with what we have always wanted to-time and attention.  We are both so excited to start this new chapter in our lives.  We appreciate all the support we have received, thank you!

Tidbits:
*Harper started taking steps on August 27th!  She was 9months and 28 days old!  So proud of her.  She will be taking off in no time.
*My last day of work was so bittersweet.  I am truly blessed to have been able to work with so many wonderful women!  I'm grateful to our psychologist/infant mental health specialist and her work in my life.  I love and will miss all the families I've come to know.  SAMC, you have such a special place in my heart.  Owen's going to miss everyone, especially Nadia!  xoxo

Ch-ch-changes...

Kelley Family Update:

*Tomorrow we meet with Owen's geneticist, yikes!  We are very nervous and a little worried.  Praying that God would give us peace and help us to remember everything they say!  I (Aubrey) on one hand am looking forward to this because it will help me feel less "in the dark."  Whatever tomorrow brings, we will get through it.
*Harper, officially an expert crawler, is now saying "Mama."  She is still so little but doing so much!

BIG NEWS!  I am so excited!  NO, I'm not pregnant!  However, I am going to be able to do my dream job...I'm going to STAY AT HOME with my kids!  This is something I have dreamed of since i was 12.  I am so thrilled to be able to do this, so thankful for a supportive husband, and so happy to fulfill my dream.  September 7th is my last day at St. Agnes.  I have so many mixed emotions about leaving such a wonderful work family, but I can't wait to be at home.  I am truly going to miss each co-worker, their kids, and the families I have come to love.  I've poured my heart into my kids the last five years there, and now I get to pour it into my own children.  I feel so lucky!
    So, a big thank you to my husband who has been so helpful in positioning us so that I can stay home, supporting my decision, learning to live with less so we can enjoy more and loving me more than I deserve.
   
*My sister Amber got married two weeks ago (August 4th)...and it was like a huge family reunion.  We had a blast!

Owen's Test Results

  *Narrator:Aubrey
    As of last week it had been 12 weeks since Owen had his blood drawn and sent to LA for a DNA biopsy.  Everyday of the last two weeks i was silently (and not so silently) freaking out.  Every time the phone rang I cringed.  We avoided the mailbox often, which did not help.  Aaron and I were anxious to say the least.  We still had not heard from the Neurologist either.  Last Wednesday at our life group I asked for major prayer for my anxiety, and that the results would come soon.  I have to say God listened and answered our prayers.  The next day, Thursday May 10th, I received a phone call on my break at work while I was on the other line with Aaron.  I didn't recognize it, so I ignored it hoping they would leave a message.  When they called again and didn't leave a message I googled the phone number.  it was a line from the UCSF office.  I texted Aaron and told him it was the call i had been waiting for.  I wasn't ready at the time to hear the news, so I waited til' my lunch hour.  I ran some errands, and got in my car and called the number back.  Jamie Fisher answered (the UCSF gal we originally met with when we saw Dr. Curry).  I told Jamie " I want to know, good or bad, I just want to know."  --With every fiber of my being I prayed the three days straight before that, that God would take this from us, that this would all be some crazy misunderstanding.  I prayed that if it was God's will that he would take this all away.-- and then she said "Owen does have a form of Muscular Dystrophy.  It's a more rare form than Duchenne's, it's Becker's."  The conversation continued, and I will be next to get tested.  But all I heard in my own head was "Owen doesn't have a death sentence anymore.  My baby is going live, a lot longer than expected, and I'm going to enjoy it all." GOD IS GOOD
    This is still a serious diagnosis, however, but we were prepared for the worst.  For us, this is great news.  The next step is for me to get tested, and if I am the carrier, my sisters and daughter will be tested as well.  Becker's is a slower progressing form of MD, which Jamie said symptoms may arise between 5 years of age and adulthood.  This grants us time, time is on our side.
    I received the best mother's day gift this year, the gift of life for my son, and grace.  God's mercies are new every morning, and we will sing his praise!  We serve such an amazing God.  We are ready to walk this road with your support.  We appreciate ALL of your prayers, thoughts, well wishes, gifts, and love. Matthew 21:22 NIV "If you believe, you will receive, whatever you ask for in prayer."
    With thankfulness, appreciation, and JOY,
The Kelley's

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001725/

Waiting

Patience is a virtue, which I (Aubrey) have not acquired yet.  Many of you have asked if we have heard anything about Owen's last blood test.  No, we have not.  We are hoping the end of this month.
    Lately i have been asked "How is Owen doing?"  The honest answer is GREAT!  He still appears to be acting and functioning like a normal two year old...Oh, lucky us-tantrums and all.  Mom and Dad however are a little tired of the waiting game and ready for some answers and next steps.  I am in no way eager to know the results, but at least when we find out we can DO something.  We are trying to trust that God's hand is in this, good or bad, and that weather we see God's purpose we will serve him through this trial.
    We appreciate all of the prayers you have sent up!  There are some days Aaron says to me "People must have been praying."  We would not have made it through some days without you!  Thank you also to those of you who have sent letters, e-mails, texts, and gifts.  We have never felt more loved.  (A special thanks to our extended church family members who made us a prayer quilt.  Never would i have thought we would be the recipient of such a beautiful gift.  Thanks Journey friends!).
    Aaron served on the local 753 Fill The Boot fundraiser this month.  Fresno City raised $12,759 for Muscular Dystrophy.  Praise the Lord!  Aaron is a Fill the Boot coordinator and attended a conference in South Tahoe where he learned so much about Muscular Dystrophy.  A BIG thanks to all our FFD guys who helped support this cause!
    Here are some pictures of our beautiful and goofy child.

Fire Boots, Underwear, and crazy hair!

Owen and Harper

Loving on his "ah-ah"

Playing on Easter Day

Chocolate Covered Strawberries- wow!

The Kelley's

Easter Eggs!

Searching

    Thank you all for your support!

The Day Our World Flipped Upside Down

    On January 30, 2012 (Owen's 2nd Birthday) Owen was diagnosed with Duchenne Muscular Dystrophy.




Lets back up some...
    When Owen was 18 months, July 2011, our Pediatrician recommended we see a Pediatric Endocrinologist (Dr. Nguyen).  The Endocrinologist discovered Owen's liver panel levels were above normal.  Between colds, allergies, and sickness we tested and retested to see if the levels would drop back to normal.  After four abnormal blood tests she referred us to a Pediatric Gastro-Interologist (Dr. Davis).  We saw Dr. Davis in January 2011, and she requested one more blood test, which turned up elevated as well.  She said she wasn't concerned about the liver, but rather the CPK level.  She referred us to Dr. Curry, a Geneticist.  We saw Dr. Curry Monday January 30, 2012 at 2:30pm.  What happened next was a blur and shock, and we will never forget it.
    We met with Jamie Fisher (MS) and her resident.  They went over our family backgrounds, Aubrey's pregnancy, and Owen's birth.  They met with Dr. Curry, and all three came back to talk with us.  Dr. Curry proceeded to ask us if we had heard of Duchenne Muscular Dystrophy.  At some point she told us that over time the child's muscles weaken, basically atrophy, and their heart does too.  We did not understand however, that she was telling us Owen had Duchenne's.  Dr. Curry is 99.9% sure it is Duchenne's.  Aubrey asked when this would become "serious," and they said around age 3 or 4 Owen would display signs of tripping/stumbling, and trouble standing up from bedding over.  She said he would most likely be in a wheel chair around age 12.  Aaron asked what his life expectancy would be, and they said late teens.  TEENS?  REALLY?  Aaron asked four times how they could be so sure (because Owen is above normal functioning for a child his age, they were impressed by his motor skills, language, and potty training capabilities, and is not showing any typical early signs of Duchenne's).  They explained that in most cases it is a genetic disorder, and that the high CPK/CK levels indicate muscle damage or tissue damage (usually a type of MD).  Owen's levels are 5,467 and normal are between 24-160.  They could also tell by feeling his calves (pseudo hypertrophy).  With tears welling up in all our eyes, we understood the severity of the diagnosis.  They told us there is no cure, but finding out early will help us get into clinical trials and studies.  They said our next step is to see Dr. "Hutch," the Neurologist.  He will oversee Owen's treatment and management longterm.  While we wait for the DNA biopsy results (at least 8 weeks for return) we will be praying, researching, learning, and working with Dr. Hutch.  We left their office around 3:45pm in total shock.  Because Owen physical appears to be healthy and normal we are still in disbelief.  We are praying that by some Miracle or God's grace that the DNA biopsy will turn up negative, and that this will all be a HUGE mistake.  However, in Owen's best interest we will be treating the situation as if they were 100% sure.
    Hearing news like this turned our world upsidedown.  Things that seemed important were no longer important.  We started thinking of how we could spend the next few years soaking up life and living it to the fullest.  We asked God so many questions, and went to our family and friends for support.  We are leaning on our Savior Jesus Christ, because we know that He will get us through this storm.  We are choosing to look at this trial as an opportunity to grow closer to God, our families, and each other.  We believe God has chosen us to withstand this monstrous diagnosis because He believes in us.  Our hearts are saddened, our minds confused, and "our plans"
forever changed.  We do not understand WHY, but one day we will.  We are praying for strength, knowledge for the Dr.'s, and miracles.  This trial is BIG, but our God is BIGGER!
   
James 1:2-3,  
"Consider it pure joy my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance."
James 1:12
"Blessed is the man who preservers under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him."
2 Thessalonians 3:3
"But the Lord is faithful, and he will strengthen and protect you from the evil one."
Philippians 4:13
"I can do everything through him who gives me strength."


*We will do our best to update you, please keep checking back! 


*To find out more about Duchenne Muscular Dystrophy:
http://www.mda.org/disease/dmd.html