Covid-19

Friends and Family I have so much on my heart. I always want my words to be helpful and not hurtful.  I never want to minimize peoples pain and always want to point others to Jesus. I desire to offer hope in the midst of difficulties by sharing my own experience of walking through suffering. 

We are living in difficult times.  Many have lost their loved ones, have lost jobs, are dealing with depression, suicide rates are at an all time high, many have had to cancel special life events, have had to learn how to teach their children at home, have had to spend time in a hospital all alone, some are stuck at home with their abuser, and so much more.  All of these things can be overwhelming.  They can cause our hearts to be weary.  We can become fearful and can become so preoccupied with who to trust and how to decipher fact from fiction.  We may become angry at what we have lost and what we feel like we are owed or deserve. We start worrying about things that MAY happen in the future.  We feel unsettled with so many unknowns. We like to be in control. 

I know I’m guilty of all these things.  You would think someone who has had so many unexpected trials in her life would not be surprised when unexpected hardships come.  Ha! Nope! That would mean I have arrived and I’am nowhere close.  No I too have strapped in and road the rollercoaster of worry, doubt, anger and weariness.  The problem is when I go down that road I lose sight of all God’s goodness in the midst of hardship.  I’m unable to effectively be used by him, I’m unable to digest his truths. I forget that he cares far more than I do about the evils in this world.  I forget that even though I can’t see what he is doing through this I can trust that he is using it for good. I forget that he is my one constant.  That He is the same yesterday, today, and tomorrow.  That he never fails me, he never leaves me, and he never forsakes me.  When our eyes are on our circumstances we are unable to recognize his blessings and let me assure you there are many.  Look for them friends.

It’s tempting to give into fear but fear is a liar. It does nothing but wreak havoc and damage. Mathew 6:27 says “And which of you by being anxious can add a single hour to his span of life.” It’s tempting for me to pout over missing my son’s last musical, my boys awards nights, my daughters end of the year activities, not seeing friends, boys graduation stuff, and even church.  It’s tempting to look at all the bad things in this world. We have to fight the flesh constantly.  We forget that it’s not about us.  If I found out that through Covid-19 God was able to bring more people to faith, that he was able to bring families together, that he was lifted high through this than I should rejoice.  REJOICE! Isn’t that what we want more than anything?  I know it’s what I want.  I think its easy for me to say I want to live in light of eternity when I have all of life’s comforts and its another thing when those comforts are stripped away.  I want to trust him with every aspect of my life and with every aspect of this messed up world.  In order to do that I need to to stop reading all the latest articles and watching all the opinion videos. Instead I need to keep resting on HIS promises. He is where I need to find my answers, joy, peace, and my security.  Here are just a few that I’m leaning on and as always I hope they encourage you to “fight the flesh”.

Deuteronomy 31;6 Be strong and courageous, Do not fear or be in dread of them, for it is the Lord your God who goes with you.  He will never leave you or forsake you.

john 13:7  You do not realize now what i’am doing but later you will understand.

Revelation 21:4 He will wipe away every tear from their eyes.  There will be no more death or mourning or crying or pain, for the old order of things has passed away.

James 1:2-4  Consider it great joy my brothers when you meet trials of various kind,  for you know that the testing of your faith produces steadfastness, and let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.

Psalm 91:14  Because he holds fast to me in love, I will deliver him. I will protect him because he knows my name.

This song also has been on repeat for me  
https://youtu.be/37wV6D49iEY

When the waves hit hard

When you have had many traumatic events happen in your life.  When you have a progressive disability.  When one of your children shares the same disability and the other one has a major heart condition you somewhat expect the waves to come crashing.  In fact it is often hard for you to celebrate when things are stable because you are just living in anticipation of the next wave to hit.  This doesn’t mean however that it doesn’t feel like a sucker punch to the gut when they do come.  Just because you anticipate they are coming doesn’t make it less painful.  Also Just because you hate enduring the wave doesn’t mean you don’t trust that God will pull you through either.  He always does and most of the time you come out stronger.  It’s hard to remind yourself of these truths though when the pain of the wave leaves an awful sting.  

Since my disease is progressive many losses will continue to come. I can expect it. Recently we have come to a new loss. Over the last year or so I have become more dependent on my wheelchair.  Balance and weakness have made it difficult to walk even with assistance.  Most of you have seen me wheeled around in my pink chair.  This is an oversized  transport chair that is not meant to be sat in for long periods of time.  It does not give support, it leaves me in pain, and requires someone to push me around.  After a wheelchair evaluation requested by my Neurologist.  We were made aware that I really needed a power chair.  A custom made one that had all the functions to keep me comfortable and out and about for longer periods of time. Each  new step for me is an emotional one. I was actually thrilled  this time though at the possibility of having more control in a wheelchair, being more comfortable, and not being reliant on another person to wheel me around.  Over the coarse of a few months and tests though we would learn that getting this chair and being able to continue to drive on my own would mean that I would need to upgrade to an electrical hand control car system and a mobility van. The new electrical system was not expected and felt like a sucker punch to the gut.  I thought I could upgrade to a simpler set of hand controls  however due to my decreasing muscle strength this was not the case. This the  insurance does not cover and it comes with a pretty steep price tag. The excitement soon came with disappointment, fear, anger, and a whole batch of other emotions. This seems utterly impossible and I feel defeated. I feel like I have been given a picture of how to make my life a little easier and give me more freedom but it isn’t attainable for me. The carrot is dangling infront of me and feels out of reach.  After a few days however the emotions calm down and I start to give them over to the Lord.  I start to speak his truths into my heart instead.  He finds a way for us to at least  get the power chair, he doesn’t have to but he does. A sweet reminder to me of his beautiful grace and provision. That he draws near to the broken hearted.  I’m grateful and even though the rest feels like the hugest mountain to climb I’m choosing to trust that he will provide the rest and asking for your sweet prayers in this.

My absence from writing is usually due to not having the emotional energy.  Everyday is a battle.  It’s a battle to push through the frustration of being physically limited.  It’s a battle to not want to waste my suffering, It’s a battle to not give into fear, and it’s a battle to fight against my own selfish flesh and keep my eyes off of my circumstances.  Some days all I can muster up to write or say is that its’s hard. It’s really stinking hard and messy. You all know that though.  This is no surprise to any of you.  You all experience hard in one capacity or another. This life is just plain hard.  It’s not meant to be easy or comfortable.  It’s not meant to be that way because it’s not about us.  It’s all for the glory of the Lord.  If you are in a season of hard, if you just got smacked with a hard wave.  I want to leave you with these words from John Piper that have been encouraging my heart and helping me to stay focused on our redeemer.  The one who redeems us from the pain this world has to offer.

There are nutrients that we draw out of seasons of suffering that are strengthening to the bones of our faith and sweetening to the marrow of our faith like we can’t get any other way. Eat them. Go ahead and eat them. As long as God keeps you in that season, don’t waste it by wishing and wishing, wishing you’d be out of it. Go ahead and eat the fruit that grows on that tree alone.

Savor the special promised nearness of the Lord. Psalm 34:18 says, “The Lord is near to the brokenhearted and saves the crushed in spirit.” There is a unique and special promised nearness that you will enjoy. Yes, that is a tearful, painful, true word you will enjoy that you will not have once the sun comes out again. Wait for God’s timing of healing and restoration. Psalm 30:5 says, “His anger is but for a moment, and his favor is for a lifetime. Weeping may tarry for the night, but joy comes with the morning.”

I don’t think the point of that is about the clock, like sadness at dusk, joy at dawn every day. That’s not the point of that statement. The point is God does not leave his children indefinitely in the depths of sorrow. Joy comes eventually when dawn comes, and it comes in God’s timing. The older you get, the more you know that terrible things don’t have the same horrible gut punch as time goes by. In the moment of loss, when you get that phone call, that utter disappointment, that painful email, a dream is shattered, a massive disappointment, something you thought would never happen — and you feel in those first hours, “There’s no way I can live with this. There’s no way I can live with this.” God’s timing is very mysterious in its effects because the next day it’s a little different, and the next day it’s a little different. A week later it’s a little different. Everybody moves at different paces, but God uses time and grace to take away the sense of impossibility of life.

I don’t know about you but I so needed to be reminded of that.  “God uses time and grace to take away the sense of impossibility of life.”  Please continue to lift our family up.  We so appreciate each and everyone of you.

Grief Is Painful

I have been struggling for months now to write a blog post.  I just haven’t been in a good emotional state to find the words. I have wanted to, however I just didn’t know how to process all of what I’m feeling in a clear and precise way. I know many of you just want to know how to pray. I’m so grateful for that and grateful that you care enough to still read my words.  I always want to be my authentic self so here it goes.  

Grief is a tricky thing and Im learning when you have loss there isn’t really a magic timeline of when you stop grieving.  I have continual loss and lately i have found myself in deep grief over it. Losing the ability to do even the littlest things like brush your own hair are losses for me.  It takes so much vulnerability to allow others to help in this way.  I long to do it myself.  I long to walk along the beach or let alone just inside my child’s school without help. This road is very lonely and you feel like you are burdening others constantly.  I see how much my situation impacts those around me and it just adds to my pain.  Please don’t confuse my grief as whining.  I’m so grateful for many beautiful things that have come from my story. Im confident God is working in and through it. I know he has good for me but the pain of loss can be overwhelming.

 I believe you can experience both joy and pain in suffering.   Real joy doesn’t have to be put-together and smiley. We often get joy confused with Happiness.  I once heard someone explain that happiness is fleeting and deep joy is not conditional to my circumstances or experiences.   It comes from a deep understanding that God is for us, he loves us, and is working in and through the hard for his glory.  It comes from our hope that this is but a speck compared to spending eternity  with Christ.   Real joy is often teary and exhausted, crawling after God with whatever strength and longing we can muster up. Our joy will prove strong and durable because God will keep us, but it will run low and feel fragile along the way.  Even in my deepest grief I can still understand that he is working this for my good while also longing for another way.

So how is our family and what is the latest?

Jason-  Jason recently started a new job working for Ministry Partners Inc. as a loan portfolio manager.  It is actually in the same building as his old job so the same commute.  It was an answer to prayer and he is very happy there.  You can pray for him as he carries the load of full-time employee as well as caregiver, husband, and father.  It can often be a lot.

Mel- My physical body continues to get weaker effecting my heart, lungs, swallowing etc. and I continue to see specialists.  Looking forward to homeschooling Hannah this year and soaking up all my time with her.

Noah- Noah’s heart continues to remain stable.  He still gets regularly checked and right now its a watch and see thing.  He still has RCM but it has not progressed.  He gets checked regularly at the Muscular Dystrophy clinic and there is very mild weakness in his hands and feet but the rest of his muscles remain strong.  It’s hard to believe it has been seven years since his diagnoses.  Thankful for God’s protection over him.  Noah has entered his last year of high school and just sent off his first college application this afternoon.  I can’t believe we are at this stage.  I’m so very proud of him.

Jonah-  This ray of sunshine continues to make us laugh daily.  He is constantly performing in some way and never tires of working on his craft.  He has enough energy for all of us combined.  He spent the summer getting to learn from many experienced people in the industry.  He was awarded a scholarship for the “Five Days Of Broadway" at the Seagerstrom, He started taking workshops with two wonderful Professional session singers, took some dance classes, and did a theatre camp.  He booked a print job with Guitar Center, and just landed his first commercial.  He is a huge helper to mom, loves Jesus, has a compassionate soul, and loves making others smile.

Hannah- Hannah’s health is doing great and we often forget that she has a complicated heart case.  We go to regular apts. that are now thankfully more spread out.   She loves to be helpful and serve.  Often times without asking she is the one who gets in and gets stuff done.  She has discovered volleyball this year and is looking forward to playing in the fall.  She is my giggly girl and loves to laugh which makes a great audience for her brother.  She is his biggest fan.  She loves school and is looking forward to fifth grade.

Dawson-  He is the best gift.  We are all so thankful for him.  He is my buddy and I love him immensely.  We really can’t imagine our lives without him.  He is a hard worker and just the sweetest dog.

We did it!

Well we did it! After two weeks of Handler training Dawson and I graduated and have been home for a few weeks settling into our new routine.  I had no idea the amount of hard work we would endure going into this training. It pushed me both physically and emotionally. It wasn't just the three hours of training each day, it was also the hours of homework each night, being away from home, and sometimes having to make the three hour drive back and forth. There were days that left me completely exhausted and depleted and I had no idea if I had the strength to go back the next day. There were a couple days I said to Jason I don’t want to go. My body is aching so bad I’m not sure I have anything left to give. Normally when  I do too much I have a day to recover and let my body rest. I pushed my body hard and I was really feeling it but I was so determined, eager, and wanted to see my dog so badly. I was learning a ton and Dawson and I bonded immediately. I knew what a gift this already was. I knew what a gift it was going to be for me  in the future and that pushed me to keep going.  I’m learning to be more and more vulnerable with my disability. Hearing you all tell me how encouraged you are helps so much. I don’t usually like to take pictures of me in my wheel chair. Not because I don’t want others to see me this way(they already do) but because it’s still hard for me to see myself this way. So seeing the videos of me walking, in my chair, or trying to use Dawson to help me up was extremely hard. There was one day that I was lying flat on my back. I was able to use Dawson to help roll me over to my side but I could not get on my knees. It just physically was not happening. I have no idea how I got to this point of not being able to do this . We tried super hard and it just wasn’t happening. Another huge loss.  It left me raw, exposed, scared, and vulnerable. In my mind I still see myself as this strong girl who loves to dance  more than anything and fly around the room chatting it up with whoever comes my way. These things have been stripped away and the Loss is big, scary, hard, and sad. It’s ok for me to feel these things and to not like it. I should in fact hate it and groan. I just also have to realize this is for my good. This is where Christ is going to do his best work.He already is. Most days I realize this but I’m also human and some days I just really hate being limited in my physical  capabilities. Even if it’s painful, hurtful, and I lose everything I remind myself constantly that it’s light and momentary. If I don’t keep that perspective and I let my circumstances get the best of me it will drive me to despair. I have to fight hard to see myself as Christ sees his daughter. Still awesome despite my inabilities, because I’m allowing him to do his best work in and through me for HIS purposes and  not my own.

I say this a lot but When I’m really able to those things, I lose  focus of the hard And Focus on his goodness. Like his goodness in bringing a beautiful community around me. All of you.  A community who raised 30,000 in 8 weeks to help provide this wonderful life changing gift. A community who continually showers us with love and support. Im blown away by your love and can't say thanks enough.  I see his goodness through you.  I see his goodness in the ways that Dawson is able to give me some of my independence. I see his goodness in showing me things that I CAN do even in my limited capabilities. I know it was a long wait to get Dawson. After spending two weeks I completely understand why. It takes so much time, love, and resources to train these dogs specifically for you. It’s a process that they take seriously. They have their own breeding program and it’s hard to find quality trainers. My trainer worked 14 days straight with me. He has a passion for these dogs and what he does. That is hard to find.  It was hard work. I don’t think you can truly anticipate what the training is like until you are actually there walking through it. I’m so proud of how far Dawson and I have come in two weeks. The videos from Day 2 to day 14 are incredible. Dawson was so worth the wait. He is already changing my life in the sweetest ways❤️ 

We are still working on me trusting Dawson when I brace him to walk. He LOVES people and attention so it’s difficult to get him to focus on just me while we are walking. We are both doing better. Walking is not something I do a ton as it is difficult for me, my legs tire out, and I can’t go very far. It’s nice to have the option to go into a short distant place though. One of the hardest things for me is to to tell you all that you can not pet him while he’s working. It’s so hard because I want you to be able to love on him as he is just the sweetest however when he’s working he has to pay attention to only me. Thank you for your  understanding. There are plenty of times at home that he is not working and able to play. You should come over and get your snuggles and pets in that way😀 We would love to have you!  Thanks again for being apart of this journey and helping to make Dawson a reality for us.  He is one of the best gifts.

How Deep the Fathers Love for us

I’m sitting here in awe and amazement at the fathers love for me.  Do you sometimes feel so overwhelmed by God’s goodness to you?

For those of you that are not familiar with my story. I grew up with out a father.  I never had the opportunity to meet my dad.  He moved out of state when I was two and him and my mom never stayed in contact. Twelve years ago after searching for information on my dad I was sad to discover that he had passed away at the age of 34 when I was just seven years old.  I was able to find his sister and we talked and exchanged information.  It was a lot for me to process and I wasn’t sure how much more information I could take at the time.  Life got busy and I forgot all about our conversations and went on with Life.

A week ago I received a message on facebook from my dad’s sister. It has been an emotional process as I have been able to talk with cousins, learn more about my dad, family history etc.  Every picture, every story, every phone conversation has been treasured.  The biggest gift though came last night when I received a long email from my cousin.  He informed me that his dad use to party with my dad. Years later my cousins dad became a Christian. My cousin said that his dad had the opportunity to visit my dad in the hospital before he died.  He said his dad presented the gospel to him and that my dad had accepted Christ before he died.  

Reading this letter I couldn’t compose myself. Did I read that correctly? Am I really reading these words?  I had Jason re read the letter and my oldest son came and held me tight.  How great to share this with them. I had wondered, why after all this time and now the Lord wanted me to connect with my fathers family.  Why now?  Don’t get me wrong I was grateful.  Grateful to connect with them, grateful to hear the stories but still wondered why now.  God knew hearing that my dad accepted Christ would mean the world to me.  He didn’t have to give me this gift but he did.  Wow!  Our God loves us so personally it blows my mind sometimes.

When we begin to let God overwhelm us with His love, grace, power, Spirit, provision, we will see Him work in and through our lives in glorious ways. I really believe that God’s will is for us to become overwhelmed with His goodness and His grace instead of being overwhelmed with our problems and trials. When we change our focus and perspective, something beautiful happens, a change so dramatic and so real that the problems we were previously overwhelmed with pale in comparison to the peace, contentment and joy that we find in Christ.  I find this to be true over and over again in my life.

For every measure of suffering, God has returned to me a measure of his grace, for every measure of pain, a measure of love and victory in Christ. For every fear, a calm and peace, for every need, a provision.  I’m so beyond grateful and pray that you all would feel the fathers deep deep love for you. 

If you have never made a conscious decision to bring Jesus Christ into your heart, then you can do so right now by praying and asking Him to come into your life. There’s no magic formula for the type of prayer that you need to pray, nor is there any special wording that would make one prayer better than another. As always, God looks at what is in our hearts when we utter our prayers, He understands and knows the condition of your heart and mind. But if you do want to ask Jesus Christ into your heart and life today, here are some suggested phrases that you can use as you pray:

• Lord, I admit that I have sinned against You and that I need Your forgiveness

• I believe that You died for my sins

• Jesus I ask You to come into my life

• I ask You to forgive my sins

• I give You the rest of my life

If this is the first time you have ever asked Christ to come into your life, I would encourage you to find someone and tell them that you just accepted Christ as your Savior and Lord. Please tell me I would LOVE to know and to be able to pray for you. I would also strongly urge you to become part of a church that preaches the Bible every Sunday so that you can begin to grow in your faith and knowledge of Jesus Christ.

https://youtu.be/e9FG12eTSbI

Our Newest Family Member

I would like to introduce you all to the newest member of our Family “Dawson”  

Dawson is a Golden Lab. Yep you guessed it he is part Golden retriever and part Lab.  Here is a brief description from our new boy.

I am one of those dogs that loves to work! I like to play too and cuddle for hours in the humans laps. I know the difference though for when its time to work and when its time to play. My trainers worked hard on teaching me this important detail.  I am really excited to take all of the training I have had and put it to good use for my special person. I know all of my easy tasks (trainers call them basic) and I know the hard ones especially for smart service dogs! I can turn on/off lights, open/close doors, push buttons, get my vest, retrieve items, brace, the list goes on and on. Pretty cool! I am very proud of how hard I have been working and I can tell my trainer is too! It makes me so excited to know that even though I am ending one part of my journey at the ranch, I am really just starting my BIG journey with my person. I will love my person so very much! I hope to meet you soon!  Love, Dawson

We will start our training in a few weeks at the Little Angels Ranch in San Diego.  The second week of our training we will be able to take Dawson home. YAY!  This is super exciting and such an answer to not only our prayers but many of yours as well.

We want to thank everyone who has been on this journey with us for the last two years. Wow! Can you believe it’s been two years. Many of you have contributed financially through fundraising, donations, your time, and prayers.  We really can’t thank you enough.  I’m so excited for you all to see and meet this sweet dog and for you to see him at work helping to make our lives a little bit sweeter.

Look for more training updates and lots more pictures in the coming weeks.

Christmas Reflection

A few years ago we created this timeline as a way to look at how our disease and medical journey has transpired.  We have since updated the time line to add events from the last couple years.  I did not put down every ER visit, test, doctors apt. etc.  I just highlighted the main medical events.  

As I reflect back on this timeline I’m filled with many emotions.  Mostly gratitude for the ways God has carried us through.  I also feel hopeful because I know that God will never give his people trials in which he will not sustain them and bring them through to everlasting glory.  This is not to say I don’t grieve my losses on a daily basis.  I certainly do but I grieve with hope.  The Hope and Assurance I read from 2 Corinthians 4:16-17 that says: So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.

I hope this holiday causes you all to pause and take time to be still. To reflect and think about what you are putting your hope in. Hope is found in the promises God has given us – promises of freedom from sin. We can find so much hope in Scripture through the gift of eternal life made possible through His son, Jesus Christ. So on that first Christmas night God not only came down, He came WAY down. As Yancey puts it in his book, THE JESUS I NEVER KNEW, Unimaginably the Maker of all things shrank down, down, down, so small as to become an ovum, a single fertilized egg barely visible to the naked eye, an egg that would divide and re-divide until a fetus took shape, enlarging cell by cell inside a nervous teenager.? To rescue us GOD became MAN and he entered this world in the same way any man does as a tiny BABY. He is our Hope. No matter what trials, temptations or pain we may suffer, we can always hold onto the hope God extends to us. I hope you all Have a Wonderful Hope Filled Christmas.

1977- Melody was born and it was a normal delivery

1989- Melody could not keep up with her peers when it came to physical activity, always came in last for the mile and walked most of it, was nicknamed peanut because I was super small.

1997- Began having syncope episodes which led to pace maker implantation for complete heart block.

1999- Jason and Mel get married

2003

- Noah was born six days past my due date.  Complicated birth which led to an emergency c-section.  My lungs began to fill with fluid, my heart rate dropped and so did Noah's. Noah hit all his milestones early and we never saw any signs of MD early on.

2005

- Melody underwent emergency pacemaker surgery to replace a lead wire.

2006

-Jonah was born.  Planned c-section.  Healthy boy.

- I had dropped a significant amount of weight this year after just having Jonah and was now under weight and we started to become concerned.  Got my thyroid checked, blood tests, saw a nutritionist etc. No real explanation.

2007

- Noah starts T-ball and we notice lack of coordination but didn't associate it with anything and never found it cause for concern.

- I had pacemaker surgery to replace another lead wire

2008

- I became pregnant with our third child and miscarried at 10 weeks. We prayed about adopting and submitted our application almost to the day of Hannah's birth.

2009

- I began to trip and fall occasionally.  We just chalked it up to me being clumsy :)

2010

- We flew to CHINA to adopt our beautiful daughter who had a multitude of heart issues the major one being poor oxygen due to only having a single ventricle. Double inlet left ventricle, pulmonary stenosis, VSD, ASD and too many others to name.

- 3 days after being home Hannah goes into major heart failure, we were given a 30% chance of survival if they operated or the option to keep her comfortable and she would not make it through the night.  God performed the first of many miracles and she had her first successful open heart surgery.

2011

- I was still falling and hadn't gotten any answers about my weight loss. After being referred to a neurologist we discovered it was a form of MD.  Which one though? Lots of tests, biopsies and doctors visits.

2012

- Noah complains of chest pain a few times.  we don't think much of it but remember being encouraged by Hannah's doctor to get EKG on our boys.  I took the boys to get tests and got a phone call that afternoon that I needed to take Noah to the Cardiologist right away.

- We were able to take Noah the next day and I was told that they might have to airlift him to UCLA or admit him to CHOC.  We were stunned and confused. UCLA  agreed to let us take him first thing in the morning.  More tests, trouble with insurance, a switch to CHLA then back to UCLA.

- May 30, 2012- We were told Noah had Restrictive Cardiomyopathy and would need a heart transplant.

- September 19 2012- Noah was put on the transplant list as a Status 2.  Lots of meds, monitoring, caths, and procedures became our new normal.

2013

- Our family goes on a make a wish trip-Disney Cruise to the Bahamas

-Tons of fundraisers put on by friends and community

- I purchase my first wheel chair-pink of coarse for longer distance walking

- Pacemaker surgery to replace battery

2014

-Genetic testing confirmed that both Noah and I have Desmin Myofibrillar Myopathy a rare form of Muscular Dystrophy.  We find out that both our heart conditions are symptoms of the disease and that it manifests different in every person.  We find out that it is a slow progressive disease that will effect all of our muscles.

- Jonah is tested and the results are negative- Praise the Lord!!!

- Hannah has second open heart surgery "The Fontan" to place a shunt to help the blood flow to her heart and they also implanted a pacemaker in her abdomen.

- Melody finally breaks down and decides to listen to doctors and gets her first set of AFO's(foot and ankle braces).

- Melody gets adaptive equipment put in her car as her legs become to weak to drive.

- Discovered weakness in Mel's swallowing and breathing

- Melody started being seen at the UCI MD clinic and learned that her breathing numbers were very weak.

- Bi-pap was delivered as well as a cough assist machine to assist with Melody's breathing

2015

- Noah moved from a status 2 on the list to a status 7(in active) Praise The Lord!!!

- continued progression of weakness for Mel

-Started walking with a cane

- We sold our house in La Habra

2016

-Noah began getting out of breathe frequently and was referred to the CHOC MD clinic

-we learned Noah's breathing numbers are mildly weak

-Noah receives his cough assist breathing machine

-Noah gets diagnosed with Torsil Coalition and has foot surgery

-Noah comes off the transplant list(Praise the Lord)

-Noah has a hard time physically getting around at summer camp and keeping up with his friends doing anything physical.

-Because of more weakness in Mel's legs she gets her first pair of full leg KAFO's but unfortunately they do not work out.

- Bought a new home in La Mirada close to church, friends,school and support

** Updated Below

2017

-Melody has surgery to insert a G-tube.  This was a much needed surgery and helped to gain 6 pounds.  It has also increased energy and made it easier to get meds and nutrition in.

-Melody has three surgeries in 6 weeks. Making it four surgeries in 10 weeks. Melody had a Ventricular Tachycardia episode that made her heart stop for 11 seconds.  It was determined Melody needed a defibrillator.  Many complications led to two more additional surgeries.

-Melody starts using a walker to get around easier at home.

- Melody now needs help getting dressed, and turned in bed

-Through overnight testing it was determined Melody needed to be put on a liter of oxygen at night.

2018

-Melody, Jason, and Noah fly to Minnesota to visit the Mayo Clinic.  We met with a doctor who is a specialist in our rare disease. We leave feeling encouraged that research is being done to help people with this disease.  Also thankful to finally find a doctor familiar with our disease.

-Noah begins to show weakness in hands, feet, and abdominal muscles

- Melody continues to get weaker and has a hard time walking without the aid of another person.

-Jason has an unexpected seizure like episode and is taken by ambulance to the ER(everything checks out fine) he follows up with many tests that all come back normal.