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

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