Update on the Lietzau's

Our family started back to school and are slowly settling back into our routines. When school started we were in the middle of a big move.  We sold our home of ten years and decided to relocate to LaMirada.  This was a difficult move for us because we loved our home so much.  We had done so much work on that home and had built so many wonderful memories.  We prayed for a long time about moving and whether or not it was the right decision for our family.  The timing was never right and so we kept putting it off.  Our desire was to be closer to friends and our church community who had a desire to help come along side our family.  My disease has slowly kept progressing over the last few years and we know it will continue.  With several flights of stairs our home was no longer allowing me to enjoy our patio or the outdoors and I would often be isolated to the bedroom which was a constant reminder of my disability. We decided it was time to step out in faith and make the move. It was so hard to say goodbye to our home but God has really made it known in some beautiful ways that this was the right move for us.  When we approached our realtor and close friend about moving he recommended we sell our home first so that we were not contingent when we went to make an offer on a house.  A few weeks later the Lord answered our first prayer and provided a wonderful fully furnished house for us to stay in.  As if that wasn’t great enough it also happened to be on the best street, with many friends from church, and wonderful neighbors who have blessed us richly and welcomed us into this wonderful community.  On top of that our home sold in three days and we were able to get our asking price.  Since being in La Mirada our kids have played outside every day with friends, riding bikes etc.  Many have lessened the load already by taking our kids to classes, offering to pick things up at the store, and have come to sit and visit.  We feel so blessed and are confident that God will reveal our future home here in La Mirada in his perfect time.  We very much covet your prayers.

Noah’s health seems to be doing very well.  I can’t tell you how much joy it has brought me to see him out riding bikes with his buddies.  I don’t take those things for granted because I realize how fast that could be taken from him.  We just celebrate today and thank the Lord each day for sustainig him.  We go back to UCLA next month for a check up.

Hannah gave us a little scare a week ago.  She was complaining of her head hurting and fainted on the way to the couch.  We took her to CHOC and everything checked out ok.  After wearing a holter monitored it revealed that she is having some skipped beats so they will keep monitoring her and she goes back for more testing next month.

As for myself my body continues to get weaker.  Some areas more than others.  My swallowing muscles are getting weaker making it more difficult to swallow and get down food.  We are praying I can be dilligent in making an effort to do the things I need to do to help in this area.  The next option for this is to go to a feeding tube and I would really like to push this off for as long as I can.  Each step is a difficult one.  I’m learning to grieve well and some days are harder than others.  I want to walk this road with Joy and not miss a single second of what the Lord has for me in this.  The other night I sat and watched this sweet boy from church laugh and play with my daughter with such joy oozing from his body.  This sweet boy wears a prostetic on his leg, and on his hands he is missing several fingers.  His balance is off, he has difficulting standing without rocking to hold his balance and falls constantly.  I often can relate to him in so many ways.  This boy brought tears to my eyes though as I sat and watched him play.  Everytime he would fall he would get back up, smile and just keeping having fun. He never seemed bothered by it for one moment.  He encourages my heart.  So often I can get so frustrated with every fall and every hard step, or not being able to keep up.  He doesn’t even think about the difficulty,  he gets himself back up, dusts himself off and enjoys life to the fullest.  May we all be so determined and so full of joy like this boy.

I feel so honored that you all still pray for our family so faithfully.  I hope you know we are so grateful for each one of you.

Update

I apologize for being so late on this update. It has been a CRAZY week. Not only did we have Noah's big Cath procedure, we had to go back to UCLA on Wednesday for a stress test, we put our house up for sale, and made an offer on a house all in the same week and it's only Thursday. This momma is T.I.R.E.D tired.

Noah's heart Cath went great. Their were no issues and Noah did great. His numbers have increased but are still in the lower normal range. The doctors feel like he can remain inactive for now. They will continue to see him frequently and monitor his symptoms. Because of the increase they would like to do another heart Cath in six months instead of 10-12 like normal. Over all we are so pleased with the outcome.  We wish his numbers would have improved but are thankful he is allowed more time.  Please continue to pray for Noah that he would remain strong and that his numbers would improve.

Why are we putting our house up for sale?  We have thought about moving for the last couple of years but the timing has not been right. Because of the type of progressing disease that I have we know that we will need a house that fits those needs as well as long term care.  We have loved our home and have put a lot of work into it however it saddens me not to be able to sit in my patio because of the number of stairs. We desire to live close to our church community and friends who can help shoulder the Load as things progress and become more difficult. We are praying that God would provide the perfect home for our families needs.

Thank you for continuing to walk along side of us and continually lifting us up in prayer. This morning I was so encouraged by the following passage and it was just another reminder to me that God is in the hardness of our stories and he is doing his glorious work. I hope it encourages you as well.

There are many black dots and black spots in our lives, and we cannot understand why they are there or why God permitted them to come. But if we let God come into our lives, and adjust the dots in the proper way, and draw the lines He wants, and separate this from that, and put in the rests at the proper places; out of the black dots and spots in our lives He will make a glorious harmony. Let us not hinder Him in this glorious work! —C. H. P.

Prayers Please

Dear Friends,

This Monday July 20th at 8:00a.m. Noah will be having his heart Cath Procedure at UCLA.  This is where they put him out and take a good look at his heart.  Back in September when they did this same test we got some AMAZING results.  We were stunned that the doctors told us his pressures were in the normal range.  This is when after consulting with the team we made the decision to make him inactive on the transplant list.  We have no idea why his numbers had increased.  The doctors think the medications have been helping but I give all the credit to our God.  We have been so thankful for this gift of time that has allowed us to have the freedoms to vacation and not be worried that at any moment we could get a call and onto the hospital for Transplant.  If his numbers have declined he will need to be active on the transplant list once again.  We want more than anything to avoid that step.  We would love more than anything for him to have more time, to be able to be a kid, to not have hospital stays, and meds that will hurt his body.  Please pray that the doctors would be pleased at his pressures and that his story would be one that points and gives credit to the Lord.  Pray that we would trust the Lord in whatever the outcome is for Noah. I have had an upset stomache all week and anxiety.  I thought I was doing ok until a few days ago. Pray that we would surrender our wants and desires and trust in God’s perfect plan for Noah.  I know I say this everytime but thank you for continuing to follow our journey and for your constant prayers.  I ran into a few people over the past few weeks that have told me that their kids pray for Noah every night and it brought such joy in my heart.  I pray that they would continue to see their prayers answered.

After waiting three years Noah finaly got to go to Hume Lake Camp this summer.  We all had a wonderful time and we felt so blessed to be up there.  This journey has caused me to not take certain things for granted.  I tried to soak in every moment realizing that it could be taken away from us again.  Thankful to the Lord for allowing us to enjoy moments like these and to create many wonderful memories to hold in our hearts. 

3 YEARS

This Saturday will be three years to the day that we were told that our boy had Cardiomyopathy and would need a transplant.  It has and continues to be a journey filled with fear, faith, joy, tears, and so many more emotions.  We have seen God do incredible things.  The fact that Noah is still stable, doing well, and has not had a transplant is a huge gift that we don’t ever want to take for granted.  I know people are often confused by that statement given that all of us prayed for a heart transplant for so long.  Transplant is a wonderful life saving option but it is only an option for so long.  Your body will keep trying to reject the new heart because it recognizes that it is a foreign object and not your own.  The lifespan of a heart varies and it is common to need multiple heart transplants.  The anti-rejection meds they give you wreck havoc on your body causing many more diseases and possibilities for other transplants like kidney, and liver.  There are multiple doctor appointments and hospital stays.  Don’t misunderstand me we will endure all of this if it means our son gets a chance to live.  However we are so grateful that God has given him more time. More time to be a kid.  More time to build memories and travel as a family. Please pray with us that God would continue to keep Noah stable. We don’t know how long he can maintain being stable.  We do know and understand however that we are not in control.  God can still choose to heal his heart, he can choose to take this away completely, he can also choose to make him active on the transplant list again, or even bring him home.  We are not in control so we trust the one that is.  Noah is so excited to go to camp this year.  Something he has missed out on for three years.  After camp though he will have a heart Cath that will check the pressures in his heart.  This is an important test.  If his numbers are good he will remain inactive.  If they have changed than he will need to be put back on the list and face the possibility of transplant.  Being put back on the list will put an end to our vacations and will mean we are bound to our phones, holding our breathe when every call comes in.  It has been incredible to have had a break from that for the last 9 months.

While Noah has remained stable, my disease has unfortunately kept progressing. We recently got the opportunity to go back east with my family for a fun filled educational trip.  We visited DC, Williamsburg, and the boys visited NY.  This trip was wonderful being with my family and I wouldn't trade it for the world, I was immensely grateful for it  but it was hard emotionally.  My disease was smack in my face.  I spent more time in my wheel chair than I ever had, I struggled to get into shuttles, subways, and bathrooms without assistance.  I was unable to participate in some things because of stairs etc.  It is a daily struggle for me both physically and mentally.  I absolutely HATE this disease. I HATE that me and my son share it.  I HATE that he may one day have the same physical struggles as me.  I want more than anything to feel strong and not have to rely on anyone or anything for that matter.  I know that statement may come across harsh but when you struggle to just walk, breathe, and swallow normally it will makes sense.  I HATE seeing it continue to progress and I often worry about what else I will have to give up.  I spend my moments wishing for the days when walking was so much easier and feeling sympathy for those who can’t walk at all. Trying not to feel sorry for myself but at the same time allowing myself to grieve the things that I’am losing. All the while Trusting and knowing that God is doing his work and that it’s all so that the works of God can be displayed.  It’s a daily surrender for me.  

When I sit and think about this journey over the last 3 or four years and the many blessings that have come with the hard,  I truly am grateful.  Grateful for the opportunities to see God at work,  for the strangers we have met who are now dear friends, for the answered prayers, and for all of you who have walked with us so faithfully.  Thank you so very much.  We ask for your continued prayers as we seek to live a life that Glorifies the Lord.

A Hard Goodbye

On my last post I mentioned a beautiful Woman Kara Tippets.  She is the author of The Hardest Peace and writes on a blog called Mundane Faithfulness.  This past Sunday she has gone to be with the Lord. Kara had stage 4 breast cancer that had spread throughout her entire body. She fought a long and hard battle and never wasted a single second of her cancer or an opportunity to share what Christ was doing in the midst of her suffering.  I looked forward to reading her blog posts on a daily basis and was always so surprised that she had the strength and the emotional capacity to write.  Kara wouldn't have it any other way.  She was determined to fight through her battle and to bring others along.  This woman has impacted my life so much and I know hundreds of others.  While I'm sad that she doesn't get to enjoy anymore time hugging her husband, kiddos, and many friends who held her hand through this journey.  I smile knowing that Kara is free from pain and suffering and in the arms of her precious Savior. Kara was kingdom focused living a life with life after death in mind.  Oh how I long for that to be my story. http://www.mundanefaithfulness.com/home/2015/3/6/kara-tippetts-documentary Please keep this dear family in your prayers.  I pray that Kara's story would have a lasting impact on her children and steer them on to share with others how their mom  lived and loved well for the glory of God.

Longing to suffer well

I again can not express enough how much your comments and support have lifted me up.  These past two weeks have been rough and busy.  In the midst of some overwhelming news about my disease I was matron of honor in a dear sisters wedding.

It was emotional as she closed one chapter and began a new one.  My dear friend is a mother of five who lost her husband a year ago to Luekemia.  During my sweet friends vows she told her new husband that he was not her plan B.  Oh how I loved that.  God is sovereign over all things and my dear friend knows this well.  She knows that this was always God's plan.  Knowing God is working out his plan through this awful disease is the only thing that helps me walk through it.  This latest step in the process of my MD has brought on a lot of fear.  Hearing doctors say things like ventilators and breathing machines causes me to tremble.  I hate that I allow the unknown to rob my joy and stricken me with unnecessary fear.  I HATE that!!  I don't want to waste a second on this disease.  I want to use every ounce of it for God's Glory.  I follow a blog of this amazing gal Kara Tippet who is suffering from stage 4 brain cancer and is on hospice.  She is the Author of the incredible book I have talked about before called " The Hardest Peace".  If you have not read this book I highly recommend it.  Kara is not wasting one second of her disease.  She doesn't enjoy the pain and wants as much time with her kids that God would allow but she suffers well.  She inspires me to not take anything for granted and to not waste this disease but to live my life for the Lord.  My desire is to suffer well like Kara. My desire is to make Jesus known in all he has me do.  Please pray that I would not let fear overtake me.  Pray that God would be glorified through all of my suffering.

Guest Post from Marla

Thank you to everyone who continues to love and support Mel, Jason, and their kiddos. Mel asked me to write a guest blog post regarding her most recent appointments. As you know, she has been having progressive muscle weakness with some rapid changes recently. This has affected her significantly in the areas of walking, driving, daily living, and most recently swallowing and breathing. She finally got into the MD clinic she was hoping for.  At her last appointments, she heard a lot of information about the progression of her disease and some of the hard realities that will likely come - in her words - sooner rather than later. Sooner than we hoped. Sooner than we expected. The doctor recommended that she start wearing a Bi-pap machine (which pretty much blows air into your lungs from a mask) to give her diaphragm a break from the constant work of breathing. Unfortunately they learned that this will not improve her numbers or respiratory muscles.  They hoped that this would help increase her energy and give her more strength for the day to day. The Bi-pap machine arrived last week, and Mel has had a challenging time adjusting to it. Not just the machine itself, but everything that comes along with it - the grief that comes from a growing dependence on machines to do "normal" activities, less control of her circumstances, fear of the future and the progression of this disease, greater need for extra help from other people...it is taking a toll on her emotional and mental health. Sadness, fear, helplessness. It is overwhelming.

Please continue to battle with our dear friends as they face the daily realities of this disease along with so many other challenges. Pray that they would taste and see that The Lord is good. Pray that they would rely not on their self-sufficiency but on the abundant grace that is sufficient for them in their weakness. Pray for moments of light and hope in the midst of a dark time. And pray that they would be strengthened to continue to look to Jesus and honor him with each breath and moment they are given.

Thank you, friends.

Marla

Guest Post By:Samantha Stowell

Some jobs you work without knowing exactly what the purpose of you being there is.  Sometimes it’s a means to an end, sometime a passion is discovered, at other times, you’re there in order to be introduced to God’s overriding plan--my orthodontist marketing position certainly fell into the latter category.  

This past summer, on a typical day working for this dear Orthodontist firm, my to-do list took me to a general dentistry in La Habra to deliver some paperwork for a mutual patient of ours--the patient being none other than Noah Lietzau.  The receptionist I had come to know informed me of his unique story and the phenomenal family he belonged to. 

Leaving the office with tears brimming my eyes, I wasted no time in looking into their website for myself.  I not only found their personal testament of the hardships they’d been dealt, but was overwhelmed to discover their incredible faith that had been produced through this trying time.  As I kept reading, I became aware of their upcoming Angel game fundraiser and excitement began to rise as I brainstormed how to get involved. 

A lightbulb went off internally as I realized how much my boss and his staff would love to contribute to this event if at all possible, and wasted no time in inquiring whether or not the office would be able to support in some way.  I was greeted with a receptive reaction from the compassionate orthodontist and the green light to contact Melody.  

It was in that initial call one afternoon that I began to see God’s coordination weave together, for as I caught Melody off-guard with the random call and introduced myself as someone who had been touched by her family’s story and desired to pray and hopefully contribute, she in turn took me by surprise with her open response in informing me of their youngest daughter’s second heart surgery being scheduled for the very following week.  Talk about amazing timing...how intentional is our God?

I was taken aback and humbled by Melody’s vulnerability and the chance to even chat with her; hearing her calm demeanor in explaining the prayer requests she and Jason had for their sweet Hannah’s surgery was such an honor--it quickly began to register with me that this family was going to occupy a special place within the walls of my own heart. 

A couple weeks later, our rounded-up group headed to the stadium in Anaheim to support the Lietzau’s as Noah received the privilege of throwing out the first pitch--kicking off what ended up being a great night of celebration and community.  It was about a month or so after the event that a good friend of mine who had been in attendance that evening mentioned his own inability to now get this endearing family off his mental radar.  It was a joyful conversation that lead to the producing of multiple ideas in how we could continue to support this impressionable family, all leading to the one that prevailed in deciding to host our own fundraiser for Noah and the Lietzau clan.  

Melody and Jason met the idea with grace and open arms, much to mine and my dear friend Andrew’s excitement and gratitude.  Planning this occasion has been nothing but a joy as we’ve seen God so clearly go before us and coordinate each donation, site approval and participant according to His will.  This fundraiser for Noah’s Heart will be a night in celebration as we, as a community, seek to love on this family that our Heavenly Father has so evidently chosen to use for His beautifully orchestrated purposes.  

It’s in relaying this journey that I reach this conclusion: we were given our hearts with distinct intentions, to be led into areas in which we can be used by God for His incredible purposes.  It’s in following these callings, though they seem to be absurd at the time, that we uncover His bigger picture, His incapsulating and complex perspective, it’s here that we get to be apart of His mysterious and glorious plans. How humbling.

So come on out to Costa Mesa on February 7th for a night of music, games, photos, delectable eats and good ol’ fashion fun--all to support this deeply loved family and glorify of the One who continues to sustain and provide for their needs.  

Hope to see you there,

Sam Stowell

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.

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.