Counting Our Blessings

Counting Our Blessings

Wednesday, January 28, 2015

Guest Post By:Samantha Stowell

Thursday, January 22, 2015

Cause for Celebration

I want to start off by saying thank you so much for the overwhelming response to my last post.  You all have been so encouraging to us.  It feels great to know we are not walking this road alone.

The day after I posted my last post we finally were able to get an appointment at the UCI MD clinic in Orange.  I have to say it was worth the wait and all the frustration.  They got us in the next day.  We met with a wonderful Neurologist who we could tell took the time to review my file.  She encouraged me that I would be well taken care of.  At the UCI MD clinic they take a team approach.  Meaning each time I'm seen at clinic I will see a team of doctors.  Pulmonologist, cardiologist, physical therapist and like six others.  We were THRILLED at this.  I go back on this Tuesday to meet the whole team and discuss a plan of action.  I have already been told that the biggest concerns are my respiratory muscles and heart so they will be monitoring those more closely.  We are so thankful for God's answered prayer in bringing us to this place.  Someone asked me if I was frustrated that we didn't choose them over UCLA.  Honestly it was hard to wait to get to this point but I started thinking about the many doctors I have seen and that now have exposure to this rare disease.  Hopefully they will be able to help other people suffering from this same disease because of their exposure and experience with me.  I look forward to updating you as we learn more about the future plan.

Today was Noah's appointment at UCLA.  We haven't seen the team since his last heart Cath procedure in September.  We were shown pictures of Noah's heart and his pressures and were amazed at how well he is doing. After talking with the team we feel that it is best to make Noah inactive on the list and reevaluate his progress in July at his next heart cath.  Their is risk to this but we feel there are risks both ways and we feel at peace with this decision.  On the list or off the list we ultimately know who is in charge :)  So how does this work?  When a person goes on the list they are given a status.  If you are waiting in hospital you are given a status 1A and are priority.  If you are waiting at home on IV meds you are given a status 1B second priority, if you are able to wait at home on meds you
are a status 2, and if you decide to go inactive for awhile you are status 7A.  Noah is currently at status 2 but will now go to status 7A.  He will not lose any of his time on the list and can go back to active at any time.  Jason and I feel at peace.  The last four months have been hard for us.  We have been worried about getting a call and having to accept a heart when he is doing so well.  We will feel so much better about accepting a heart when he truly needs it.  Transplant is great in the fact that it saves lives but it also causes a ton of other issues and complications so the longer we can pro long it the better for our son.

Please continue to pray for Noah and for our family.  We continue to trust in the one who formed Noah and has him in the palm of his hand.

Tuesday, January 13, 2015

Living Life With MD

I have been encouraged by a few to share my story about living life with MD. To be honest it’s been something I haven’t really felt comfortable sharing.  I know many of you will find that hard to believe since I pretty much live my life like an open book.  I think the reason is because I don’t want to be pitied or made to look weak.  Vain I know. It’s hard to admit weakness.  It is something that has brought so much of my sin to the surface, it has robbed my joy, effected my marriage, family, and friendships, kept me from doing things I love, and dashed future dreams.  It is making me rely on others for help and making me loathe words like adaptive equipment, disability, and disabled.  At the same time this disease has made me compassionate towards others who are fighting battles, it has taught me to let others help, it has made me rely on the Lord more, it has strengthened my faith, made me deal with ugliness in my heart, and made me long for Heaven.

We first noticed symptoms in me about 6 years ago.  It started with weight loss.  I had begun to drop a lot of weight for no explained reason.  I have always been petite but I was dropping to an unhealthy weight and losing muscle.  I also began tripping and falling. Kind of relieved to know I’m not just a clumsy gal. Four years ago after a trip to New York where we did a lot of walking I began to feel as though I was carrying weights in my legs when I walked.  At first I thought I was just out of shape and needed to hire a trainer.  After a regular check up with my doctor, he watched me walk and sent me to a neurologist.  I remember spending an hour and a half with the neurologist where he pointed out all these weaknesses I was completely unaware of.  I had just been compensating for things over time not even realizing that I had lost the ability to do simple things like give a high five, get into the car without using my hands to lift my legs etc.  It was very mind blowing to me and scary because none of the doctors could tell me what and how fast this would progress.  Over the next couple of years I would endure lots of testing, poking, and prodding.  Many doctors could tell me that I had a form of Muscular Dystrophy but none could tell me which one.  Their are many forms and they all effect the body differently.  Most have no cure but the life expectancy and progression of weakness varies in each one.  During all these visits and tests we began to see more and more weakness.  It has been a slow progression but one that is starting to have heavier impact on my day to day life. I can no longer walk very far without the need for Mustang Sally(my pink wheel chair) I wear Orthotic braces to keep me from falling, I now have to have hand brakes in my car because my legs are deemed unsafe to drive.  I have difficulty walking up a step, swallowing,slurred speach due to lazy tongue, opening up jars, using scissors, washing my own hair and the list goes on.  I was desperate for answers and help.  Last year I underwent genetic testing and found out that this rare disease is called Desmin Myofibrillar Myopathy.  Both Noah and I have the gene but it represents differently.  Mine has effected the conductivity of my heart and skeletal muscles and his has presented in Restrictive Cardiomyopathy.  We do not know if he will develop the adult onset of skeletal muscle weakness like I have or not.  It is something I give up to the Lord frequently.  I pray he would not have to endure this on top of living a life with Cardiomyopathy.

One of my biggest struggles with living with this disease is not having a doctor familiar with it.  I have not had luck getting into the MD clinic or finding someone to follow my case.  I’m so passionate about wanting to do everything in my power to help my situation but do not have the knowledge or tools to make this happen.  Please pray that we would find some good doctors that could help.  One of the biggest blessings however has been the loving support from family and friends.  I have an army that pitches in to help and feel so grateful.  I wish it wasn’t needed but am growing in my ability to accept well.   These are big things, and sometimes have been hard to bare but God has been so faithful in his word to show me how intentional he is in our suffering.  It’s all so that the works of God can be displayed. I’m sure there are many of you that are up against it now or feeling overwhelmed.  I know I’m not the only one experiencing hard things.  Whatever your story is whatever your hard is. I can’t stress enough how God is sovereign over all these things. Not only is  He  in control of our trials but he purposes them for our good. Yep he does just read Romans 8 -It doesn’t mean that it takes the difficulty away and that all these things aren’t horrible and painful now and that we should love it and go through life saying everything is fantastic. I just believe that it is nothing compared to what is waiting for us.  Something far better than we can even imagine. An Eternity with our Heavenly father. An eternity with no pain, no trials, no more suffering. Oh how I long for that glorious day.