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.

Monday, December 15, 2014

Noah's Thoughts

Hi everyone this is Noah. I wanted to tell you all that my heart is doing fine. I'm happy that I haven't gotten worse I took this weird test to see how I would do in high altitudes because I want to go to camp and Big Bear. I'm able to go to Hume Lake this year which I'm super excited about. We are also planning some other fun activities since I got the ok to travel. Sadly there are still lots of doctors appointments and medications I have to take. Good thing I take pills now and not the yucky medicine. I still wish I could play soccer and hockey. I'm glad though that  I'm doing well and not in the hospital like some of my friends that I have made this year had to.  I'm a little worried about the actual surgery of the transplant but I usually try not to worry about it too much.  I have really been enjoying 412 my Church's youth group.  It is a lot of fun.  School has been a lot harder this year and there are many tests but I have been doing well.  Thank you so much for continuing to pray for me and my family.  I know God is working and has everything figured out.



Wednesday, November 19, 2014

Thankful

Thanksgiving is fast approaching and we have so much to be thankful for:

 Our sweet boy has made it almost three years since his first diagnosis in January 2012.  He has been on the transplant list for over two years now and has remained hospital free.  I can't tell you what joy it brings me to see some of you still faithfully wearing your bracelets.  Eric Twisselmann I was brought to tears the other day when I saw you on stage sporting your faded bracelet. I love how worn it was.  It was so faded the words were washed away but I could still tell what it represented and was so beyond grateful to see the support. I know so many of you are still so faithfully praying and we can't thank you enough.  We are so thankful Noah has remained well.  His pressures are stable for now but we don't know for how long so we celebrate today and the last few years knowing things could dramatically change tomorrow.  Really it's how we all should be living, thankful for today not knowing what tomorrow may bring.  Can I get an Amen?  Our sweet boy still needs a new heart but only God knows the timing.  He remains on the transplant list and we remain hopeful that it's in God's control and not our own.

I'm also thankful for the gift of driving and for the muscles in my body that still work.
As this muscle disease continues to progress it brings me more and more thankful for an amazing husband who carries his bride and lessens her load, supportive friends, family, adaptive equipment, and God's grace.

I'm thankful for our sweet girls successful surgery.  She is doing amazingly well and there have been no  surprises.  She loves that her momma has a pacer just like her.  She has regular check ups and positive reports.  So thankful.

Last we are thankful for all of you that would care enough to read our words and receive our updates.  It means so much to us.






Give thanks in all circumstances; for this is the will of God in Christ Jesus for you. (1 Thessalonians 5:18)

Sunday, November 9, 2014

Bittersweet

Yesterday our sweet girl turned six.  It was a birthday to remember.  She has been in love with horses for a while now.  She was super sad when Jason, the boys, and I went horseback riding a few months ago.  She did not meet the age requirements and was unable to join.  She wanted a horsey birthday so mom began the hunt  to find someone who had a pony or a horse.  A sweet friend I grew up with had a connection to a ranch close by.  The people had never done a birthday party before.  After hearing about our family from our friend they were willing to host a party for us at their ranch.  This ranch holds several horses including ponies, a pig, chickens, and several peacocks.  It was the perfect place.  The hosts went above and beyond and truly blessed our sweet girl.  It was such a joy seeing her ride a horse for the first time. Hannah will always remember this special birthday.

At the end of the day looking back through all the pictures my heart began to break for Hannah's birth mom.  I think and pray for her often when she comes to mind.  She always comes to mind on this day in particular. We are so blessed to have Hannah's birthdate.  Since children are abandoned they don't often know a birthdate and are given one based on weight and other criteria.  Her birth mom felt like her daughters birthdate was significant or she wouldn't have taken the time to pin it to her clothing.  She cared enough to let me know and I will forever be grateful for that and so many other things.  I can not imagine the loss she must feel not knowing if her sweet daughter is alive and well. Oh how I wish she knew what an incredible gift she has given us and how brave we think she is for leaving her in an elevator of a hospital in hopes of her getting the care she needed.  I wish she knew how healthy and beautiful she is and how much we adore her.

 Lord please wrap your arms around Hannah's birth mom and give her the love and comfort that only you can give.  Lord I pray that if she doesn't know you already Lord I pray that you would make yourself known to her.  Lord thank you for choosing us to be Hannah's parents. Lord I pray that she would grow up with a desire to love and serve you all her days.  I pray that she would put you first above all things.  Grow in her a compassion for the fatherless, give her a gift of humility, patience, and self worth.  Thank you for saving her life and for continuing to heal her body.  Thank you for the fighter that she is and that you made her perfect created in your image.


Tuesday, October 14, 2014

It's not about the why it's about the who

The last two weeks have been rough.  I have been to at least eight doctor appointments. Six of which have been for me.  I have been told after allergy testing that I'm allergic to almost everything except foods(Thank you Jesus),I had a CT scan of my sinuses, told I need tubes put in my ears, after a PFT test was told my breathing is declining, and was told I can no longer drive with out adaptive equipment(that one was the hardest). There were days where I felt like Alexander in the book "Alexander and the terrible no good very bad day". Great book by the way.

Normally I can tackle each hurdle as they come knowing God is working out his plan through each obstacle I face.  This last week however I finally broke and was crying out to God Why?  Why so much?  Why my driving? Why does it all have to be so hard?  Many of these things I knew I would have to face with this disease I just thought it would be further down the road for me.  I knew all the answers to the Why in my head but my heart was buried in my circumstances and I was feeling very defeated. After a very good and much needed meeting with a friend I was super encouraged by an article he read to me.  Many of you know about Pastor Saeed Abedini.  He is an Iranian American Christian pastor imprisoned in Iran.  He has been incarcerated now for over two years.  He wrote a letter to his daughter for her 8th Birthday.  In the letter he talks about how he recognizes that this must be so hard and confusing for her.  He goes on to say that she is probably asking Why? Why is daddy in prison? Why are they doing this to him?  He says to answer your question you must first understand that it's not about the Why it's about the Who.

This pierced my heart and reminded me once again that it's not about me.  It's always all about Jesus.  Not about the why but about the WHO.  JESUS. Who am I to ask Why? Who am I to question his plan for my life? Jesus took on human flesh, went through more than anyone could bare, and was hung and crucified on a cross for my behalf. Yes I cry and I groan but then I'm reminded of how much I don't deserve but have been given much.  It's not about the why it's about the who. Powerful words.

Thankful for friends who remind me of God's truth.  The only way to get through these hard moments is to preach the Gospel to ourselves and to meditate on his truth daily.  For some of us hourly :) Thankful that he is working out his great plan and that he is sovereign over my life.  I pray that when hard days come again I will remember these truths, put on my battle gear, and fight the good fight.