Counting Our Blessings

Counting Our Blessings

Sunday, June 11, 2017

Life After Four Surgeries in Ten weeks

Friends I’m so thankful for the amount of love and support you have all shown me over the last few months. I made it through number four and am at home recovering. It will be another 6 weeks before I can raise my left arm or drive.  Please pray as we adjust and work hard to recover.  It has been a roller coaster ride for us over here.  What started out as preparing for the fact that I was going going to get my first body piercing AKA G-tube, led to three more surgeries on my heart. YEP THREE MORE!!! It was crazy, unexpected, and a total shock.  Not at all to the Lord though.  I was exactly where he wanted me and I needed to trust that he would use every ounce of this crazy tidal wave we were riding for his glory.  I’m often giddy at the ways he shows me he is.  I endured two failed surgeries, 4 paddle shocks to the heart, awful reactions to new meds, painful incisions, and things too embarrassing to discuss on the blog.  It wasn’t all roses and rainbows and I would have given anything not to endure it.  However I experienced Such joy in having my wonderful Husband by my side, he really is honoring his vows we said at 22 in sickness and in health, sweet friends giving of their time to help step in so my husband could work, people bringing meals, flowers,cards, gifts, caring for our kids, sweet calls from far away family members, and beautiful conversations with nurses about Jesus.  Apparently when I come out of anesthesia all my inhibitions go out the window and I become super concerned with every stranger I encounter and them having a relationship with Jesus.  Honestly this is where I saw Jesus the most.  So many great nurses and hospital staff and opportunities to share how the Lord has worked through our story. This really is what it’s all about right?  I long to be fully recovered and have more independence and I’m hopeful those days will come soon. As much as I long for those days I’m praying for more opportunities for the Lord to use me as he sees fit.  Crazy? nope.  Refusing to acknowledge we have an amazing creator who was persecuted for our sins and took on the ultimate sacrifice on our behalf now thats CRAZY. In the mean time I will focus on how incredible it is that the Lord gave me the strength I needed to endure all of this, how I have come out so much more stronger and appreciative.  It would have been so easy to let all of this defeat me, to drag me down, to sit in anger, disappointment etc.  If I would have chosen that I would have missed out on so much.  None of it is meaningless.  It ALL has purpose.  I would have missed so much.  What is your go to when your pressed in at every angle? Life is so full of hardships if you haven’t experienced any they will be coming. The bible promises it. When difficult times come into our lives and we find ourselves unable to comprehend or to understand, the enemy is quick to throw doubts and questions into our minds. We find ourselves questioning God's goodness and God's wisdom in allowing these things to happen. We may even be bitter and angry with God for allowing this to happen to us and wonder if He really understands. But God's word confidently reminds us that God does understand. Things do not just happen by accident to the Christian with no meaning or no purpose. God is in control. In Romans 8 Paul reminds us no one or nothing can separate us from God's love. Even in the most difficult of circumstances.  I hope that whatever hard thing you are facing, whatever is pressing in on you that you can draw encouragement from these words.  God is for you.

Sunday, June 4, 2017

Surgery Tomorrow

Well tomorrow is the day.  Surgery will be at 7:30a.m..  Not gonna lie I'm really going into this one kicking and screaming.  I just feel tired and don't have it in me to go through it all over again.  For whatever reason this is what I'm suppose to do.  It's hard to understand why a fourth time.  Why another surgery?  I trust the Lord and know this has purpose but I really feel like he is putting that to the test. I feel like we have tried to trust well but right now we are being pressed in at every angle.  It is going to take a lot of trust in the doctors to get this surgery right and to trust that this is it, and it's going to take a lot of trust to send my boy on a plane this week to Japan.  Please will you once again pray for us.

Wednesday, May 31, 2017

Fourth Times A Charm......Maybe????


Sitting here numb in disbelief that this has actually been my life the past 10 weeks. I was just starting to turn a corner. Hopeful that I was drawing near to the end of my recovery. My weight is up, pain has lessened, energy is up.  Then the doctor lays another bombshell on me. Granted it's not his fault, he's just the messenger.  After careful monitoring of the new defibrillator they determined that the lead wire has dislodged from my heart and I will need to have ANOTHER SURGERY. Yep if you have all been keeping track this will be 4 in 10 weeks.  I can't even begin to tell you the disappointment I feel. These 10 weeks have been some of the hardest our family has had to face and if you have been following this blog for sometime and know our story we have faced some doozies. We are exhausted and weary and this surgery will come at some hard costs. I don't mean financially.  Jason will need to give up his spot on the Japan mission trip, and I will have to have a huge level of trust sending Noah, Jason will have to miss more work, Jason along with many others will have to put on their care giver hats, my kids will not be able to rely on me once again during my recovery and they will have to watch me endure more pain and more time strapped to a bed, longer time that I will not be able to drive, Grandparents will give up more of their time and the list goes on.  We know and believe God is at work in all of this and that his ways are wiser than ours.  Sometimes it's hard to make sense of it all and that's when the rubber meets the road right? That's when all we have is to choose to trust. I choose to trust even when it's hard to keep enduring the pain. I choose to trust even when I'm exhausted and out of strength. I choose to trust when I see the tears from my kids faces as I tell them hard news.  Yes I choose to trust. Is it easy? Nope but it's all I got. All I can do is revert back to God's truths. Lean in and let him carry me through. Let him be the lifter of our heads, let him guide my ways. I give it all up to him and I choose to trust.  Please pray that we can do this well. We pray for wisdom that we would be faithful to glorify him in the midst of these hard things. Pray for our kids, for our marriage, for all the doctors and staff, pray for no more complications.  You all have been carrying us so faithfully and thank you never seems like enough. We are getting through this because of your love and support so thank you❤️

Thursday, May 18, 2017

Rescheduled

So we are all set for Surgery this Friday at 3:00p.m..  The last few days have been hard as the anticipation of this surgery is heavy on our minds.  My surgeon told me that they will have to test the defibrillator once it is implanted.  He also mentioned that there is a chance that it wont work because of interference with my current pacemaker.  They believe this was the issue with the last surgery.  If this were to be the case they will need to surgically remove my current pacemaker and set the pacer/defibrillator combo.  Its hard, tricky, and causes fear for a lot of complicated reasons that are hard to explain.  

Our biggest prayer is that the defibrillator would work, the lead will connect to my heart with no issues and all will go better than we could have asked.  We are also hoping this recovery will go smoother than the last.  It’s been a long 8 weeks and I’m just very ready to be on the other side of things.  Grateful for the last few days to feel somewhat back to my old self.  Below is a song that I have been listening to this week. Hope it blesses one of you.


Monday, May 15, 2017

Disappointing News



Well we were all set for surgery tomorrow and just got a call an hour ago saying that the surgery needed to be cancelled.  St. Joseph Hospital did not have the correct lead wire that my surgeon needed to perform the surgery.  This is a huge disappointment because it takes so much work to coordinate kids schedules, and Jason’s work.  They are looking at Friday of this week.  Please pray for us as we are just trying to hold it all together at this point.  We are tired, and fearful, and ready to get this all behind us. Pray that God would meet us in these moments.  Pray that we would hold strong to his truths.  I pray that we would relish and remember the beautiful ways he is working out his plan through even these hard moments.  Thank you for continuing to shoulder with us.  We appreciate each and everyone of you.

Friday, May 12, 2017

Hard Recovery

So grateful beyond words for all the texts, cards, flowers,gifts, meals, visitors etc. over the last few weeks. This has been a really rough recovery.  We did not expect things to go this way and are nervous heading into the next planned surgery.  Yesterday we were advised by my surgeon to go to the ER to get checked for infection because I was developing flu like symptoms and not getting better. After spending seven hours in the ER they did not find anything. Their best guess is that its most likely a reaction from all of the heavy antibiotics I have been on from my last two surgeries.  I had a rough morning today but by the afternoon I finally started to make a turn for the better. I even got out for a walk and enjoyed the fresh air and the warmth of the sun. Praise God!! We are hoping this continues.  Please would you all pray that I would feel good enough to have this surgery on Tuesday.  They will be implanting a defibrillator.  It’s a much needed surgery and I’m ready to get this all behind me and on the other side of things.  I Cannot even express to you how grateful I’am for an amazing church body who just enters in to the pain of others in the most beautiful of ways.  It’s overwhelming how beautiful it is to be so cared for.  Please forgive us for not responding to texts or messages right away and know that we want to, we care, and we are so thankful.

Thursday, May 4, 2017

Information overload

So I have been told over and over in the medical community how special I'am, how rare my condition is, and how I don't fall into a regular category. My case is unique they say.  Unlike any other they say. Isn't that true of us all though. I mean We all are special because we were created in God's image. Each one of us a true miracle. Our lives have purpose because of our Maker. We were born with a purpose.  Because of the Lord's hand and new advances in medical technology I have gotten to be a wife, a mom, a friend, and share Jesus with so many. 

Twenty years ago my heart journey started. I started passing out. I had several fainting episodes. Thanks to great insurance I was able to have a myriad of tests in a total of two weeks ultimately leading them to discover that I had complete heart block. The only way to keep me alive was to put in a pacemaker. So crazy to look back at all of that and see God's faithfulness over the years. How he has sustained me. They put my first one in at the ripe age of 19.  I would go on to have two lead failures which led to emergency surgeries with new leads placed in my heart and new pacemakers. Making this a total of three. Because I'm fully paced 100 % of the time my battery is only good for 6-7 years. I had my fourth pacemaker surgery 2 1/2 years ago.  Hope your all keeping up😏 it's a lot.  

This last year I have had a ton of pre Ventricular beats and small Ventricular Tachycardia beats.  That small pacemaker in my body records all heart activity. It's unbelievable technology. It amazes me. They have adjusted my pacer with no luck of stopping the episodes. After my 20 min short g- tube surgery my heart was in distress causing my cardiac enzymes to be elevated. They are still not clear why. Like I said I was only under for 20 minutes.  Two weeks later I had a Ventricular Tachycardia episode that caused me to black out for a few seconds. At my Cardiologist appointment they picked up from my pacemaker recording that the V-tach episode lasted for 11 seconds at over 200 beats. Super Scary!! How you all doing? Still with me?  You all are going to be heart pros after this. The doctor grew concerned at this point and had to take everything into account.  My muscular dystrophy, me being completely dependent on my pacemaker etc. After discussing my case with several doctors familiar with my history they landed on the safe approach to put in a subcutaneous Defibrillator. They did not want to take any chances of a longer more dangerous Tachycardia episode occurring.

Well that surgery took place last week and did not go well. I left the hospital with the battle wounds and no defibrillator 😞After they put in a defibrillator they have to test it to see if it will work. They put your heart into V-Tach and the defibrillator should shock the heart. It sadly did not so they had to use the paddles. You know those crazy things you see on TV when they are trying to save a persons life.😳 Yep they used those! They did this a total of four times and the defibrillator never kicked in. It was mis reading my pacemaker. So at this point They made the decision not to keep me under any longer. They had to sew me back up with no defibrillator. The surgery that was suppose to take 2 hours took four and instead of a defibrillator sewn into my body I got fitted with an outside "Life Vest". Think uni bomber. It's a uncomfortable tight vest that is a external defibrillator.  It's there to protect me should an episode occur.  You could say My best friend for the moment. To say I was disappointed about the surgery was an understatement. I was tired, sad, and did not want to hear that more surgery was in my future. At the same time I was alive, my brain was working, there were no other complications, and I could still cry out to the Lord. All things I will never take for granted. 

Yesterday we met with my amazing Doctor who has basically lost many hours of sleep studying my case and talking to all the top doctors in this field. I'm so grateful for this man. He discussed two options with us. One option was to remove all of my leads and start new on the left side with a pacer/defibrillator combo. Super high risk for lots of complicated reasons with many doctors who are very uncomfortable with this option. It may be needed in the future but they all agree to put it off for as long as we can. Option B was to leave my pacer and the leads that are on the right alone and to just put an additional Pacer/defibrillator combo on the left running another lead to the heart. This is the plan we are going with. So I will now have two pacers. The kids think this is funny and cool all at the same time.They are calling their mom a Cyborg. The TSA's are going to have a field day with this I'm sure.  The reward will be that if the pacer on the right should go out or a problem with a lead occur we will have a back up. We will also have a much needed defibrillator keeping my heart from going into potentially deadly v-tach episodes. All very good things.


There are risks with this surgery but they far out weigh the other option. We feel good. We feel relief. We feel thankful for life saving medical equipment.  We feel ready to get it all behind us. It's been a hard last few months. Like always we see God's beautiful hand in it all, he's allowed us to minister to people through it, he's worked through his people beautifully as they have ministered over and over again to us.  It's because of this that we stay strong, it's because of this that are kids are doing amazing through it.  Keep praying and keep trusting. These 20 years are proof that God is so mighty and sovereign and works beautifully in all things.

Monday, April 24, 2017

Trying yet again to surrender it all

Being satisfied in God (or anything) always seems easier when all is going well. But when things you love are being stripped out of your hands, then the test is real. If God remains precious in those moments, then his supreme worth shines more brightly. He is most glorified. -John Piper

For those of you who have been following my blog for sometime know what a big John Piper fan I am.  He has been a huge encouragement to me in some of my darkest moments.  He constantly reminds me that it’s not about me, he reminds me that God is not wasting any of my suffering, and he reminds me that God loves to bless his children.  Oh how I need those truths repeated to me over and over and over again.  Why do I need to hear them again and again?  Because we forget.  We retreat inward and we allow ourselves to focus on our circumstances.  we focus on what they are doing to us instead of focusing on what HE is doing through us.  I once again have to make the choice of letting go of control, and fear, and doubt and surrendering it all to the Lord.  It’s not easy but I know the peace and joy that comes when we are fully able to rest in him.  I need your prayers that I will once again be able to do this.


This Thursday I will once again go in for surgery.  My heart is getting weaker and the doctors feel like the best plan is to put in a subcutaneous Defibrillator.  So that is the plan.  Our biggest prayer is for a successful surgery with no unexpected surprises.  My heart went through some stress after my last surgery and we are praying that the Lord would protect my heart.  Would you all say a prayer for Jason as he watches his wife once again get wheeled away for surgery.  pray that the Lord would meet him in the sweetest ways.  Pray for our kids that they wouldn’t feel anxious but would rest in knowing that the Lord is watching over their mom.  I’m filled up knowing that in the days leading up to surgery when I’m feeling depleted you all are lifting us up. Thank you for that.  You all don’t know what a gift that really is.

Thursday, April 13, 2017

Another bump in the road

Thank you so much for all your encouraging words regarding our videos.  It was fun to get the kids involved and give you guys more insight into my surgery and also how Noah is currently doing. 

 I’m writing to ask for your prayers once again. We were feeling hopeful after my surgery with how well the feedings were going and the increased energy. It was so nice.  We unfortunately have come to another bump in the road and its pretty big.  After my surgery while I was in the recovery room I started having pretty intense chest pains.  The doctors were concerned and ran some tests.  The tests showed that my troponin levels were elevated. A Troponin test measures the levels of troponin proteins in the blood.  These proteins are released when the heart muscle has been damaged, such as occurs with a heart attack.  The more damage to the heart, the greater the amount of troponin in the blood.  A normal level is .10 0r lower and mine was .395. They ran several tests to check for blocked arteries etc. and determined that I most likely had inflammation around the lining of my heart.  I was to follow up with my cardiologist.  On March 30th I had a black out episode that lasted for a few seconds and took me by surprise.  I saw the doctor a few days later and he was able to pull up my pacemaker recording that told him on that day I had a Ventricular Tachycardia episode that lasted 11 seconds with my heart rate in the 200’s.  This could have led to me going into cardiac arrest if it was a longer episode.  Because of these incidents the doctors want to put in a cardiac defibrillator.  This is where things get tricky.  I have a pacemaker and four lead wires in my heart.  My arteries can not fit any more wires on that side.  Lead wires have an average life span of 12-15 years.  I have had mine for 12.  They might have to consider lead extraction surgery but it is high risk. My muscular Dystrophy is high risk just going under anesthesia.  There is a team of 4 doctors all consulting one another on the best approach and we will talk about the best plan this Wednesday. Surgery will most likely take place at the end of the month.  This has felt intense and emotionally depleting.  It didn’t help that a few days ago I had another bad fall either. Yep! Scraped up my elbow, bruised my knees, my ego lol., and have felt the aftermath in my whole body.  I seriously have considered buying and wearing a rubber suit.  Too many hard falls. It stinks. But you gotta get up, dust yourself off, and keep pushing through.  It also feels good to let out a scream, put on some good music, and laugh at the ridiculousness of it all.  

We all have a story. The one God writes for each of us may go down many paths. No matter where you are on the journey, there is a plan and a purpose to what you experience. If you are struggling, take comfort in knowing you are not alone.  It is hard enough to walk through pain and suffering but if you don’t have Christ none of it will make sense.  I urge you to put your faith and trust in christ if you haven’t already.  Only he can give you purpose, only he can help you make sense of it all. The greatest truth that you can ever hear is that Jesus Christ died but rose again, and that you, too, will die but can rise again into newness of life.


Please pray for us friends. Pray for all the doctors involved, Pray I would not have any more episodes and that God would protect my heart. Pray for Jason and our family that we would lean in to God as we walk through another bump in the road. I know God is not surprised by any of this and that is where I draw my comfort.  We will keep pressing on, we will hold fast to his promises, and we will bless his name in the process.  

Tuesday, April 4, 2017

Blog Update With Noah

I had some fun doing an interview with Noah.  Lets just say we are both not as natural or as comfortable as Jonah. There were many edits but we managed to pull it off.  We hope you enjoy the update.  Jonah is begging me to do another video with him so comment below what you would like us to talk about.  We would love to include your questions.  As always thanks for following us on this journey.

https://youtu.be/Egqv1p43Vmw


Thursday, March 30, 2017

An Update and a VLOG

Hi Friends,

Thank you all for your continued prayers over the last few weeks.  The surgery for my G-tube went well.  I'm so thankful to be back to my old self.  The feedings are going great and we are beginning to see some bursts of energy.  Thankful to have this step behind us and we are hopeful that it is going to just increase my quality of life in wonderful ways.  I continue to be humbled by the way you all love and support us during this journey.  It's not always easy to enter into peoples hard trials.  I don't take this for granted.  I know what a gift this is and I just thank you from the bottom of my heart. Click on the link below to view a Vlog interview with Jonah and I about G-tubes.  This kid cracks me up.  He never shy's away from an opportunity to be on camera.  As always we are happy to answer any questions you might have.

https://youtu.be/WDAfOIWOZIE


Wednesday, March 8, 2017

God's Still Good

Hello Friends,

It has been a busy month with lots of doctor visits and tests.  I’m in a place where I’am just really looking forward to getting this surgery behind me.  So many of the doctors I have visited are all feeling hopeful that this feeding tube can provide relief in so many areas of my body.  I’m very encouraged by their optomism and very much hoping the same.  So here we go this Tuesday March 14th is the day.  I would very much appreciate your prayers.  This surgery normally would be a simple procedure in a radiation lab but because of my compromised breathing, pacemaker dependent, and muscular dystrophy they will need to take more precautions.  This means I will be admitted, intubated, and monitored closely overnight.  I would really not like to wake up to any surprises or complications. Whatever the outcome I know we will face it head on.  I was so encouraged by this following post I read today.  The following post comes from a man who’s daughter just received a new heart.  She has been barely holding on for the last 4 weeks.  I don’t know this family but his daughter has the same heart defect as our Noah.  The trauma they have faced these last four weeks could be our reality at any moment.  I hope in all I face that I would echo his same words.

OUR FAMILY HAS BEEN GIVEN A GREAT GIFT. Lexi has been given a great gift. There are many children and adults who are very sick while waiting for a transplant, and they die before an organ becomes available. Right now we are talking about how "good" God is because He answered our prayers and He provided a heart for my daughter. But this begs the question...if a heart had NOT been provided for Lexi, would God still be "good?" Would we have been strong enough to endure the ordeal of losing our child with our faith in our "good" God still intact? The goodness of God far surpasses the mortality of our child. For us to simply say that God is "good" when things go our way is crude thinking. I think that the "get-rich, success and wealth" gospel that is so prevalent in America has warped our concept of what a "good God" is. The Bible never promises health, wealth, and prosperity to people who follow God. God certainly DOES bless people with health, wealth, and prosperity, and we do see it in the Bible. However, it is not a guarantee. It should not be expected as a promise or a natural privilege of following Jesus. Not a single disciple was wealthy and prosperous. Their reward for following Jesus? Death and persecution. They were crucified upside down. They were beheaded. They were boiled in oil. Would any of them, having willingly laid down their lives for the sake of the gospel, denounce the goodness of God because of their suffering? I think not. The message of the gospel is not prosperity, health, wealth, and success. The message is that Jesus is enough, no matter what happens in life. It's that simple. We live in a fallen, sinful world, and suffering is part of the package.
So, God is not good because he gave us back our daughter. He ALREADY WAS GOOD to begin with! (“Oh, give thanks to the LORD, for He is good! For His mercy endures forever.”
Psalms 107:1) What God has shown us is GRACE. He has shown us favor which we did not deserve. What we have experienced pales in comparison to the salvation He has given us through Jesus, but it is one extra blessing we have experienced in our journey with Him. So how would we endure if Lexi had not received a heart, and if she had died one of the many times she came close to death on this journey? It would have been brutal. We would have been broken. But bones mend and wounds heal. God would have given us the grace to get through, and Lexi would be with Him. As it is, God has a unique purpose for Lexi here on earth, and He has honored our prayers and chosen to return Lexi to us. She will have to live her life to find out what that purpose is.
We can never understand the ways of God. However, we must trust in His goodness, knowing that He sees the full picture, and we can only see a small portion. Isaiah tells us, ““For My thoughts are not your thoughts, Nor are your ways My ways,” says the LORD. “For as the heavens are higher than the earth, So are My ways higher than your ways, And My thoughts than your thoughts.” Isaiah 55:8-9 


I hope his words are just as much an encouragement to you all as they were to me.  God has purpose in all he does. Amen and Amen!!!

Praise
We are still celebrating that we surpassed our goal for our service dog.  We are waiting to hear more details on the time line and will let you all know soon.  We were also able to purchase a mobility scooter.  My kids are so excited that mom gets to join in on bike rides and no longer has to wait on a charged scooter at Target or Costco.  WOOT!!!!  Watch out La Mirada peeps this scooter goes pretty fast.  Praising God for the ways he continues to provide and sustain us.

Prayer
I have a cold and can not risk it getting to my chest.  I want to be well enough for our woman's conference this weekend and for surgery.


Saturday, February 25, 2017

WOWZERS!!!!




Sitting here in aww and amazement at what God continues to do through his people.  Two months ago we put a need out that our family would be raising funds for a service dog.  Not only did you guys help meet that need but you surpassed it.  In TWO months.  Thats CRAZY! We will get to use the additional funds for a dog bed, dog food, grooming and the additional will help when we have to stay in San Diego for the training.  We feel so blessed and sometimes so undeserved by the amount of love and support from you all.  I don’t know how people walking our Journey do it without an amazing village like ours.  You all contribute so much and thank you’s just aren’t big enough for how much we appreciate it.  I wish we didn’t need it but at the same time we would miss out on seeing the remarkable ways God works through his people and the ways he turns ashes to beauty and because of that I wouldn’t change a thing.  He continues to show me “He’s Got This”  He lifts my head and gives me just what I need and I GET to give him glory another day.  Blessed be his name.  

We will now go on the placement list for a service dog. We will keep you updated as to when we will get to add this furry member to our family.

Prayer Requests:

Mel’s surgery got changed to March 14th. Please pray for all the pre- testing and for no sickness.
Pray for my dear husband it’s  sometimes harder being the caregiver and watching the ones you love go through hard things.

Pray for the kids that they would process this all well


Psalm 145:9
The LORD is good to all, And His mercies are over all His works.


Saturday, February 18, 2017

What is a Feeding G-tube???

Thanks for your overwhelming love and support from my previous blog post.  I wanted to let you all know that we have a surgery date scheduled for March 9th at 11:45 for the G-tube.  I know many of you had a lot of questions regarding the G-tube and how it will work so I hope to answer those in this blog. 

A gastric feeding tube (G-tube or "button") is a tube inserted through a small incision in the abdomen into the stomach and is used for long-term enteral nutrition. Some people with neuromuscular (and other) conditions have difficulties with chewing and swallowing (dysphagia). This can sometimes lead to aspiration (food or drink 'going down the wrong way' - ending up in the lungs), which in turn can lead to choking, bacterial infections and possibly pneumonia. If this is the case, it may be necessary to avoid certain foods & drinks, or in some cases to cease oral feeding completely.

So now that I have given you the textbook terms let me answer some of the most asked questions:


Can you still eat through your mouth?- Yes.  For now I can eat soft, smooth, wet foods. Because of my swallowing weakness I get food residue build up in my hypopharynx.  I can feel this so I will swallow six or seven times per bite to empty the residue.  However eventually as things become weaker.  I will lose the sensation that things are stuck and that is when it will be too dangerous for me to eat by mouth.

Will the tube stick out of your stomach?- Yes and No.  For a few months while my surgery site heals and creates scar tissue around the incision I will have to live with a tube sticking out.  After that they will pull the tube out and put a flat mic-key button in.

What will it look like and how do the feedings work?-  








What things can you eat through the tube?- Caloric Nutritional meal supplements, medications, and things that are blended well.


A few things “Not to say to a person who is getting/has a feeding tube”: 
  • I would kill myself if I couldn’t eat anymore
  • I wish I had a feeding tube so I could lose some weight
  • You are so lucky you have an excuse not to eat the things you don’t like
  • It’s not that bad, at least you can still eat some things

Can you taste the tube feedings?- No.  This will be great because most of the formulas are not very tasty.

How often does the tube need to be replaced?-  We were told this depends on how well we keep things clean and maintained.  Most tubes last 12 months and can be easily replaced in your doctors office.

Can you still go swimming?- Yes I can still go swimming, take a shower etc.  


As always feel free to ask me any other questions if i miss anything.


Things I’m Thankful for:
- All of you(seriously we feel so blessed by your prayers and desire to walk this road with us)
-A great conversation with my kids about the surgery.
-Lots of reaching out from friends and family with prayers, sweet words and offers of help.
-The most amazing clam chowder from the world famous Splash Cafe in Pismo.
-My son Jonah getting a Fearless For Christ award at school.
-The incredible amount of donations that have come in for our future service dog.
-God’s word(the bible) that is food to my soul


Things to Pray for:
  • All of the upcoming tests and procedures before the surgery
  • My anxious heart(that I would trust God with the unknowns)
  • For Jason and the kids as they continue to process it all.
  • For the Jog-A-Thon next week


Wednesday, February 15, 2017

Finding joy in the next step

I started attending two bible studies a few weeks ago. In one of the studies we are going through James.  As someone who has and is walking through trials I find the first chapter to be incredibly encouraging.  I appreciate that James is very specific in verse 2 in using the word When. James 1:2-4 Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness.  And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.  James doesn’t say if, or maybe, or by chance. No he’s very specific and for good reason. There is no way around it,  we all will endure trials of different variations.  It will look differently for each of us but none the less we will experience hardship.  It’s a fallen broken world we live in and one of the hardest lessons we christians have to learn is how to be joyful in the midst of pain and suffering.  It’s not easy at times. If were honest it’s not easy most times. What does it mean when James says to “count it all joy”?  In order to count it joy we have to first understand that it is for our good. It is growing our patience, and deepening our faith and dependence in Christ.  Also in order to count it Joy we need to have hope for our future.  In Romans 8:18 it says  For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.  This is how I find Joy.  I trust that God is working out something far greater than my pain and suffering and I have the HOPE and assurance  that it is nothing compared to what lies ahead for me.  

 This is exactly what I needed to be reminded of this month as I enter in to another hard step in my MD journey.  Over the last three months I have hit a faster progression with my Muscular Dystrophy.  I have felt it in my swallowing, my breathing, my digestion, and many other muscles.  As a result of this we have had to make some hard decisions regarding next steps for me.  The first issue we have had to address is how to get the best proper nutrition into my body.  My swallowing muscles have become progressively weaker making it very difficult and dangerous for me to eat  a lot of foods.  If the foods are not smooth, soft, and wet I’am not able to get them down properly.  For every bite it takes me six to seven swallows to remove my food from the esophagus.  I have to make sure its clear before the next bite or the food will back up and block my airway.  You can imagine how tiring and hard this makes eating.  Because of this issue I’m not getting adequate nutrition and that creates a whole host of issues in my body.  With the suggestion from my doctors we have decided it is best for me to have Surgery for a feeding G-tube.  I will explain more about this in a later post.  Basically my feedings will go straight in my stomach allowing me to get proper nutrition without working so hard and putting myself in danger.  This will be in the next couple of weeks so I would appreciate your prayers.  Normally they would do this surgery in a radiation lab but because of my respiratory weakness they will need to do it in the OR and intubate me during the procedure to take the load off of my lungs.  For MD patients it is dangerous to go under anesthesia.  From my understanding it is because it relaxes your muscles and our muscles are already weak so to relax them any more compromises them. This is increasingly dangerous for your main organs. The doctors will do a series of lung functioning tests in the next week to determine the progression of weakness.  I will also have a full cardio work up and am currently wearing a heart monitor because of some arrhythmia issues. 

Things I'm thankful for:
-A night away with my husband(given by the in-laws) to process, lament, and talk through all these hard things
- Sweet friends who live around the corner who come over and share what life with a G-tube is like
-Friends and family who take you to doctor apts.
-Sweet friends who pray with you and send you encouraging books
- foods that I can still enjoy
- Great insurance, doctors, and procedures that help your quality of life
- two bible studies a week that keep me in the word

Things to Pray for:
Would you pray that both Jason and I would be steadfast in our faith, and that we would cast our anxieties on him.  That with this new step we would find Joy and comfort in knowing that he is making us complete, that he works all things together for good, and that he is the lifter of our head.  I know He goes before us and that we can trust in his goodness for our life.  Pray that as we explain this next step to our kids they would have great understanding, that we would be clear in our explanations, and that it would not bring about any fear.  I pray that the Lord would already be working in their hearts an understanding of what James is saying in Chapter one.  Please pray that the surgery would go smoothly and that there would be no complications or weakness from being put under.




Thankful for you all as always,

The Lietzau's

Tuesday, January 31, 2017

INCREDIBLE NEWS!!

Incredible News!!!


UCLA called this afternoon and they informed us that they were officially taking Noah off of the Heart Transplant List.  The team met this morning to go over last weeks heart cath results and to discuss his case.  Noah is no longer sick enough to qualify for a Heart Transplant.  Praise the Lord!!  This does not mean that he no longer has Restrictive Cardiomyopathy it just means that he is not sick enough to need a new heart.  They will still see him at clinic every three months and he will remain on his meds.  They want us to celebrate but also want us to be aware that things could drastically change at any moment.  We are celebrating for sure.  What does this mean for Noah? Well we celebrate that his heart is doing well  for now but Noah is still very weak.  His muscular Dystrophy effects his breathing and many of his muscles.  Please continue keeping him in your prayers.  Were so thankful for the gift of time that God has given him with his own heart.  All thanks and praise to you great God of Love.


Saturday, January 28, 2017

Fundraisers

Hello Friends,

I wanted to make you all aware of two Fundraisers we will be holding next month to help raise money for a Mobility dog.  On February 4th from 1-5 Faith Koontz and Greer Bascom along with several others will be putting on a Boutique.  Their will be lots of fun handmade things and baked goods on hand. I know so many of you have been working so hard on this event.  Please help spread the word and invite all your friends.  It is sure to be a fun event.   


The Second Event will be a Jog/walk-A-Thon and it will be held on Saturday February 25th from 8:30-10:30 at Heights Christian Junior high. The address is 12900 Bluefield Ave. La Mirada CA 90638.  If you are interested in Jogging/walking please contact Melody at lilmommamel@yahoo.com to pick up a pledge packet.  For those of you that attend Grace look for me tomorrow as I will have them to pass out.  This is open to all ages.  Their will be prizes, 50/50 raffle, and more so stay tuned for more details.

Thank you so much for all your support.  We are grateful for the ways we have already seen the Lord provide for this big need.



Thursday, January 19, 2017

Prayer for Noah

I wanted to remind you all that Noah has his Heart Cath coming up this Monday at 9:00a.m. For those of you who are new to our blog. Cardiac catheterization (cardiac cath or heart cath) is a procedure to examine how well your heart is working. A thin, hollow tube called a catheter is inserted into a large blood vessel that leads to your heart. They put Noah to sleep and they go in and are specifically looking at his heart pressures. They do this procedure every six months. Five years ago his pressures were a little below the normal range and he was put on the Heart Transplant List as a status two.  We held our breathe every time the phone would ring.  A few years ago his numbers were in the low normal range and doing much better.  They stayed this way for the next year and a half so the team moved him to status 7 on the list.  This means he is still occurring time but is not accepting a heart.  We are so thankful for how well Noah's heart is doing but we also never forget how fast his pressures could change and how big the possibility is of him going into cardiac arrest.  He still has a scary EKG that has been unchanged since he was 9.  It basically shows that he is in major heart failure.  The doctors are very puzzled by this and monitor him closely.  On Monday if his pressures are still good they will move this heart cath to every year.  This would be amazing! If they are not good he will need to become active again on the transplant list.  It's a procedure that none of us look forward to so will you please pray with us for good results.  Now that Noah is older it gets even harder.  He is processing all of this right along side of us. He understands it all and its a lot for a teenager.  Noah also needs to have surgery on his other foot.  Last year we were told that Noah has Tarsal Coalition in both of his ankles. Most likely a symptom of MD. This was causing Noah pain in both feet.  Since they do not do them both at the same time, we had them do the foot that was causing the most pain.  This was a bigger surgery with a harder recovery than we had expected.  We wanted to hold off on doing his other foot for as long as we could but it is starting to cause him a lot of pain.  Please pray for wisdom for us as we try to decide the best time for this surgery.  He is slowly showing more and more signs and symptoms of this Desmin Muscular Dystrophy that we both share.  I can't even explain to you how incredibly hard it has been for myself to walk through this and experience loss after loss but to watch your son struggle is 1000 times worse.  Even though I'm confident that the Lord is going to use him in powerful ways my heart hurts.  When he asks me if he might need a wheelchair one day I feel a sucker punch to the gut.  When he tells me it hurt to breathe at youth group, or his legs hurt from running, or I watch him struggle to play a game of football, open a jar, see his lack of muscle tone.  It all wrecks me.  Pray for Noah.  Pray that he would cling to the promises of God.  That he would trust in his goodness and truly believe that he has good for him.  Pray for Jason and I as well that we would believe the same.  Thank you for those that have carried us through these years and continue to pray for our family and thank you to those that are just discovering our story.  We are so blessed by you all.

Thursday, January 5, 2017

Update

Friends you have all blown me away by your support and generosity.  In just seven days we have raised $9,850 all because of you.  This process has been similar to our adoption with Hannah.  Lots of paperwork, phone interviews, learning, eventually being matched, and patience on God's timing.  We know this will be a huge gift for our family and will make things so much easier in a lot of different ways for us.  We are so amazed as we learn all the things a dog can be trained to do.  I linked a couple videos in case some of you are curious.  A good friend of mine Faith Koontz, her mom Greer, and a bunch of volunteers will be hosting a Boutique fundraiser. It will be held on February 4th 2017 from 1-5 at 531 Chestnut St. LaHabra CA 90638.  There will be lots of homemade items, baked goods, and various vendors represented. Thank you to everyone who is helping. I was overcome by a donation that came in from a family who's child is battling cancer.  It's so hard sometimes to be on the receiving end but I get how Good it feels to give even when your facing your own trials. Sometimes its the people in the middle of the storm that get it the most. Thank you dear family for your generosity and please know that your family and your son will be in my prayers. I'm so thankful that these troubles even though most days it doesn't feel like it,  really are light and momentary compared to what Eternity will be like with our heavenly father.

https://youtu.be/9kPA7fQSAsM
https://youtu.be/5Nh1fS1N9NQ
https://youtu.be/3b8_-C4BB4g

For all my prayer warriors, Noah has a heart cath coming up on January 23.  Our prayer is that their would be no surprises and that he would have good numbers that allow him to stay inactive on the transplant list.

Thank you all so much again for all your love and support.