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!
About Me
- The Kelley Family
- We are an ordinary family, two kids, a dog (a large dog), with an extraordinary journey.
Monday, August 13, 2012
Tuesday, May 15, 2012
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/
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/
Saturday, April 21, 2012
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.
Thank you all for your support!
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
Saturday, February 4, 2012
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
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