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.

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.  

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

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

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.

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

Verse Concepts

The LORD is good to all, And His mercies are over all His works.

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