It Is Well

Hi Dear Friends, I wanted to thank you for your patience as I have let some time pass since our last medical update. We have had a lot going on with appointments, and especially trying to manage those around the COVID19 pandemic. Steve has had an exceptionally high work load as you can probably imagine as he and his team are coordinating best ways to care for our firefighters as well as be accessible to the community members in need of Fire/EMS services. I am Coordinator of the Fire District's Family Support Program and that

has had its own set of challenges. Our last post was to celebrate our 25th Wedding Anniversary and it was super nice to do a post about love, joy, and hope. The paradox is that even a medical update post still has this same love, joy, and hope. These emotions aren't based on circumstances but rather a deep abiding relationship with God. The difficult road we have been on is certainly trying and can be emotionally overwhelming at times. The comfort comes in knowing that Jesus will not bring more into my life than what he also prepares me with to battle the storm. Our last posts in January were evident of our difficult journey and seeking God's guidance and comfort as so many things were all happening at once. So ... lets catch up ...

It was finally determined that my early January hospitalization was not an infection with the implanted port in my chest (for IV access). I was diagnosed with SIRS - systemic inflammatory response syndrome. I have Mast Cell Activation Disease (they find this disease in higher concentration with people with Ehlers-Danlos Syndrome EDS). My surgeon did research and found a port made of different materials and I had that implanted and it has been a successful implant. It allows me to have IV access and labs drawn from the port and not having to have countless needle sticks. My feeding tube was relatively new when I posted in January and it was definitely overwhelming in the beginning. It took some time to get a feeding formula that worked well with my body and contained enough protein to allow me to continue to get exercise without depleting my muscles. It takes between 10-12 hours for the formula to make it from the bag on the IV pole and enter through the tubing into my small intestine. I have been able to get enough hydration and nutrition that now I am able to only have to go to the Infusion Center at the hospital only once a week for about 7 hours. The nursing staff is great. I get my own room and it gives me a day to renew and refresh. I had the reconstructive surgery on my right thumb and the surgery was a huge success and no longer dislocates on a whim. I am doing occupational therapy for it to strengthen it and be able to do more with it. My left thumb is in pretty bad shape and we are discussing when I will have the same surgery on it. The reduction in pain and minimizing osteoarthritis will guide our time table on that procedure. Two weeks ago i dislocated my right shoulder and so I am currently waiting on MRI results to make next step decisions. My EDS is very aggressive and agitating to the joints because of its faulty connective tissue and defects in the collagen that stabilizes joints. The only issue remaining that is still under observation is my heart. I have been having rate and rhythm problems along with some pretty severe chest pain. The doctors are on top things and I am doing a specialized monitor that relays in real time. The cardiologist feels an evaluation for a pacemaker is the next steps to consider. The concern always lies with the fact that EDS has caused me to have an aortic aneurysm and so I have to be somewhat hyper-vigilant about taking good care of my cardiac symptoms. While this may seem like a lot, it is becoming easier to manage. I definitely couldn't manage all of these moving parts

without my diligent and medically trained beloved husband.

The evening and morning routines can still be tedious and time-consuming but we are getting better and quicker! In my last medical post in January I shared my prayer with you - Lord, I need your strength, I need your courage, I need your endurance, and even I need your smile and sweet spirit to do life today. I went on to explain that needing Jesus to just get out of bed is a sweetness that fills my soul and allows me to start the blessed day he has given me filled with great meaning - an urgent call to comfort others who find themselves suffering and/or in emotional pain. My husband and I are learning how to comfort others who find themselves suffering from the same pain we have or are experiencing.

In January I shared a hymn that reflected my weary soul, "Softly and Tenderly".

The lyrics say come home you who are weary, come home. Oh for the wonderful love he has promised; love he has promised for you and for me ...

As we have developed a rhythm to our new medical routines, a peace has settled in and leads me to another hymn that has been a favorite of mine for years, "It is Well With My Soul."

"When peace, like a river, attendeth my way,

When sorrows like sea billows roll;

Whatever my lot, Thou hast taught me to say,

It is well, it is well with my soul.

For me, be it Christ, be it Christ hence to live;

If Jordan above me shall roll,

No pang shall be mine, for in death as in life

Thou wilt whisper Thy peace to my soul.

It is well with my soul,

It is well, it is well with my soul."

We are treasuring and thanking God for the ever constant love, hope, and joy he pours over us as we take this battle one day at a time. Thank you for taking the time to check in on us and pray for us.

By His grace alone,

Lee and Steve

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Comments

Mark Colavecchio:

Thank you for the updates Lee. It matters so much in these days we are physically separated. Please know that is all we are, "physically separated". Les and my hearts and prayers are with you and Steve as you endure and move down the road in front of you. We will pray that your strength does not fail. Keeping your eyes on Jesus is such an encouragement to so many of us. Thank you for this gift!

Judy Wilson:

"It is well with my soul" is one of my favorites too. I will think of you whenever I hear it. Thank you for your honest updates. I think about you often and keep you in my prayers. Remember I am not far away and usually, especially these days, at home.

Ellen Bunch :

Love you and Steve. The chorus to this song reminds me of you: (Blessed Assurance) This is my story This is my song PRAISING MY SAVIOR, ALL THE DAY LONG This is my story This is my song PRAISING MY SAVIOR, ALL THE DAY LONG

sandra henry:

That's one of my favorite hymns too. Thank you for your update and the pictures. You are beautiful and haven't aged a bit! You two make a good team. Thanks for all you do to support others amidst your own suffering. We pray for your continued improvement and for your medical team. Also for protection from covid and other infections. Love always.

Steve Braden:

Go to Sabrena Logan April 6 entry and listen to her sing "It is well with my soul." It will bless you. She went to school with Dawn and was in our youth program at Clear Branch. Uncle Steve and I are sending hugs and prayers your way. We love you guys

Steve Braden:

Sorry. That's April 8 entry

Kimball & Elizabeth:

Praising God for His comfort and care for your body and soul! Thank you for sharing the victories and the struggles. May your joy be found and finalized in Jesus!

James Broman:

Amen... blessings and may the Peace of the Lord rest upon your weary souls (and bodies!).