Counting Our Blessings

Counting Our Blessings

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.

Thursday, December 29, 2016

Redbasket Link

Thank you so much for your outpouring of love and generosity regarding my last post.  I was in the process of setting up an account with Red Basket.org and did not have the link yet to give you all.  It is up and running now.  Red Basket is a non-profit organization that allows individuals to donate time or money directly to people or projects that need help. Your donations are tax deductible and 100% of the profits are directly given to the cause.  The link to the page is  https://redbasket.org/1200/more-mobility-for-melody. We have a baked goods boutique and walk/jog-a-thon in the works.  We so appreciate your prayers and encouragement as well.  I was so encouraged this week by a donation that came in from a gal who has been following our story since we adopted Hannah.  They are not connected to anyone we know.  I know there are several of you that have found us in the same way.  You are all examples that our suffering is not just about us but what God is doing in the hearts of those around us. It really is amazing. Thank you for your outpouring of love and support.  We feel so blessed by you all.


Mel

Monday, December 26, 2016

Merry Christmas

Merry Christmas Everyone,

As I write this letter I’m overcome with gratefulness.  The Lord continues to show us his love through the hard.  Sometimes it is through his word, an article, a worship song, or a conversation with a friend, a stranger, a family member.  Sometimes its through acts of service or giving by others.  It’s a reprieve from doctors apts, it’s a good night sleep, or seeing your kids thrive.  It’s honestly too many ways to recount.  God is so good.  He reminds us that this life here is so small in comparison to what lies ahead for us.  I want to bottle up this gratefulness that I feel because I know that I’m a sinner and there will be days ahead where I will forget and I will be consumed by my circumstances and the hard.  I don’t want to forget.  I always want my eyes to be focused on the things that are eternal.  The one who promises to deliver us.  JESUS.  The one who came as a babe and took on flesh to bare our sins so we could have eternal life.  Who was born in a smelly stall, beaten, slandered, and nailed to a cross on our behalf.  I hope you are all able to soak in what that means for your life and I hope you all had a wonderful Christmas and a Happy New year.

We wanted to share with you all an opportunity to come along side our family.  This last October I had a really bad fall in our home.  It led to me having a concussion.  I lost my balance just walking from one room to the next.  I couldn’t recover and hit head first into a wall and landed on the hard tile. Walking is already difficult however this shook me up pretty bad and I have been more scared to walk even in our home.  My balance has been worse because of it and it has caused us to consider other options for me.  Our youngest son Jonah has been praying and begging us for a dog for years.  With everything we were dealing with we did not want to add anymore in our lives.  We also couldn’t have a dog that might knock me over.  After the fall we started to think about the benefits of a mobility service dog.  As we looked into it further we discovered what a gift this could be for myself and our family.  A mobility dog comes trained to help people like me walk, pull my wheel chair, help open and close doors, help me out of bed or off the couch, help retrieve items like my phone and keys, call for help, help get me up after a fall and so much more. This thought brought me some comfort as I’m often home alone now.  After some prayer we found a wonderful close by organization and have applied.  We have been accepted but we are 101 on the list and the wait could take years unless we raise the money ourselves.  A mobility dog with lifetime training cost $24,000. We are hoping to do some creative  fundraising soon.  However if you feel led in any way,  to give, to fundraise, and to pray we would be so grateful.  Praying this option of a mobility dog would become a reality for our family.







With love and gratitude,


The Lietzau’s

Friday, November 25, 2016

Thanksgiving 2016

Happy Thanksgiving Weekend!  I’m so thankful for all of you who have so faithfully been following our journey over the last five or six years.  As I reflect back on this year Im so thankful for the ways GOD has sustained us.  We feel so truly blessed.  Noah’s heart remains stable, Hannah’s heart remains stable, and even though I continue to progress in this muscle wasting disease, GOD so graciously shows me the ways he is using it for his glory.  This year God provided us a home in a wonderful community filled with members of our church body who pour over us with love and acts of service time and time again.  God knew in our journey it would take a village and he certainly does provide in those times of need.  Just recently a group of men surprised us and made it possible for us to park our van in the garage.  To most this seems like no big deal in fact most do not even park in their garage.  For me however this meant no more long walks to the front door.  This meant Jason did not have to carry me time and time again in the house, and it gave me more of a desire to get out of the house.  They also took the time to tear down an old patio cover that the city was requesting be removed.  My heart swells with gratitude when I think of the many ways on a weekly basis that people pour into our lives and help lessen the load.  I hope you all know what a gift you all are to us.  Thank you just doesn’t feel like enough sometimes.  You are all constantly on our hearts and in our prayers.  I hope that you all were able to be with family and loved ones this holiday but most of all I pray that you were able to count your blessings.  In this world full of hatred, violence, sickness, and pain it can often be distracted and hard for most.  We often forget that God redeems beauty from pain.  We forget that he is still on his thrown, and most times we forget that we ought to fix our eyes on the things that are eternal.  2 Corinthians 4:18 says, For our light and temporary affliction is producing for us an eternal glory that far outweighs our troubles. 18So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.  




Happy Thanksgiving Friends,


Mel

Monday, October 24, 2016

What is Muscular Dystrophy?

Here is a good explanation of What Muscular Dystrophy is.....





Here is a list of things most people with Muscular Dystrophy wish people knew....

https://themighty.com/2015/11/what-people-with-muscular-dystrophy-wish-others-understood/



For those that are Bored I mean interested lol. in learning more about our particular form of Muscular Dystrophy.  Desmin Myofibrillar Myopathy....


What is the official name of the DES gene? The official name of this gene is 􏰀desmin.􏰁
What is the normal function of the DES gene?
The DES gene provides instructions for making a protein called desmin. Desmin is found in heart (cardiac) muscle and muscles used for movement (skeletal muscle). Within muscle fibres, desmin proteins are important to help maintain the structure of sarcomeres, which are necessary for muscles to tense (contract). The desmin proteins surround rod-like structures called Z-discs that are located within the sarcomere. Desmin connects the Z-discs to one another, linking neighbouring sarcomeres and forming myofibrils, the basic unit of muscle fibres. The connection of sarcomeres to each other to form myofibrils is essential for maintaining muscle fibre strength during repeated cycles of contraction and relaxation.
How are changes in the DES gene related to health conditions?
Myofibrillar myopathy can be caused by mutations in the DES gene Page 2 of 5

page3image384
More than 40 mutations in the DES gene have been found to cause myofibrillar myopathy. Most of these mutations change single protein building blocks (amino acids) in desmin. Mutated desmin proteins cluster together with other muscle proteins in the sarcomere to form clumps (aggregates). The aggregates prevent these proteins from functioning normally. A dysfunctional desmin protein cannot properly interact with Z-discs, leading to abnormalities of sarcomere structure and problems with the formation of myofibrils. DES gene mutations that cause myofibrillar myopathy impair the function of muscle fibres, causing weakness and the other features of this condition. People with DES gene mutations are more likely to have a weakened heart muscle (cardiomyopathy) than people with myofibrillar myopathy caused by mutations in other genes. In some cases, cardiomyopathy is the first symptom of this condition. 


Monday, October 17, 2016

First Vlog


https://vimeo.com/187744832
The following link will take you to a video I made addressing some questions about MD and the equipment I use.  I apologize because after viewing the video I realized I answered the second question but I didn't do a very good job at answering what a typical day looks like for me.

What does a typical day look like for me?  Well everyday is different.  Having three kids I don't get the amount of rest needed which can make me super tired and super cranky.  I have to be aware constantly of my responses. Just ask my sweet family I'm not always perfect at this :(.   Its like somebody trying to function daily on an hour of sleep.  I struggle with getting dressed particularly getting my legs through the pant hole, or putting on my socks.  This is from my legs being weak and not able to stretch or lift.  I have to remind myself to eat often.  It is a chore to eat because it requires so much work and effort of those particular muscles.  Everything needs to be chewed well and broken down because my swallowing muscles are weak and food gets stuck and causes choking and aspirating.  I need to take in a ton of calories because my muscles are constantly atrophying and I can not keep weight on.  I have to concentrate on my walking to avoid falls, I have to rely on others to open cans, lift objects, bend down for me etc.  I have been blessed with many helpers Though and a great team who help out a ton.  When I don't have doctors appointments I  love to meet with friends, get out of the house to soak in the sun, go to Chik-Fil-A, go on dates with my hubby, spend time with my family, and enjoy church.  I hope this gives better insight into my days and the challenges with MD.  Keep asking those questions.  I feel blessed if I could help even just one person. I love educating people and I'm hopeful that more and more research will be done in the future to hopefully make things easier for not just myself but for Noah and kids his age and younger who are dealing with the hard symptoms of Desmin Myopathy.

God Bless,

Mel