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.