I have been encouraged to start blogging again more frequently. I have become aware that there isn't a whole lot of information or blogs out there that share what its like to live a life with Muscular Dystrophy especially our particular form. There are hundreds of forms of MD and they all present so differently in symptoms that its difficult to find others that can relate. One thing that almost all the forms of MD have in common is that their is no cure. The progression is what significantly varies from one another. This blog will still be a place to hear updates and to learn how to pray for our family but I hope it will also serve as a resource to learn and relate. I want to start off by showing a timeline of when our journey with MD began.
1977- Melody was born and it was a normal delivery
1988- 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.
- 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.
- Melody underwent emergency pacemaker surgery to replace a lead wire.
-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.
- 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
- I became pregnant with our third child and miscarried at 10 weeks.
- I began to trip and fall occasionally. We just chalked it up to me being clumsy :)
- 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.
- 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.
- 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 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.
- Our family goes on a make a wish trip-Disney Cruise to the Bahamas
-Tons of fundraisers
- I purchase my first wheel chair-pink of coarse
- Pacemaker surgery to replace battery
-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.
- Jonah is tested and the results are negative- Praise the Lord!!!
- Hannah has second open heart surgery "The Fontan" to place a shunt and a pacemaker implanted.
- Melody finally breaks down and decides to listen to doctors and gets her first set of AFO's.
- Got adaptive equipment put in my car
- Discovered weakness in my swallowing and breathing
- I started being seen at the UCI MD clinic and learned that my breathing numbers were very weak.
- Bi-pap was delivered as well as a cough assist machine to assist my breathing
- Noah moved from a status 2 on the list to a status 7(in active) Praise The Lord!!!
- continued progression of weakness for mom
-Started walking with a cane
- We sold our house
-Noah began getting out of breathe frequently and was referred to the CHOC MD clinic
-we learned Noah's breathing numbers are weak
-Noah receives his cough assist breathing machine to use every day
-Noah gets diagnosed with Torsil Coalition and has foot surgery
-Because of more weakness in my legs I get my first pair of full leg KAFO's
- Bought a new home close to church, friends,school and support
I'm sure I left out some things as it was hard to go back and remember it all. If you have questions for our family please leave them in the comments and Noah and I will be happy to answer them.
It has been a hard road but we are aware that it could have been so much harder. We are grateful for all the ways that the Lord has and continues to meet us in our brokenness. Thankful that he gives us a hope thats far greater than a cure for MD. He sustains us, gives us strength, and his mercies are new every morning. He allows us to continually see him working through our situation and for that we are so grateful.