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Tuesday, April 2, 2013

Five Years

It's been five years.  Five years that we will never take for granted.  Five years ago at this exact moment I was getting settled in for a long night, awaiting the word that Tricia's double lung transplant surgery had been successful.  Hundreds, maybe thousands of people, mostly strangers stayed awake with me, reading my blog updates every few hours, holding their collective breath, praying for Tricia's second first breath.

I know it's been frustrating for you who care so much for Tricia for the past several months as the blog has been quiet.  For reasons I won't share, we felt it best to use only Twitter and Facebook to update about Tricia's health, and we deeply appreciate your patience.

Tricia's health has very slowly continued to decline since arriving in Durham in mid-October.  She is down to 100 lbs, her breathing numbers are severely low, and she is very, very weak.  She has had several different kinds of setbacks which have kept her from being re-listed...signs that her body is shutting down.  Tricia has been working incredibly hard, participating in physical therapy as much as her body will allow.  This journey has been incredibly difficult and frustrating for her.

We believe that the end is coming soon.  Either she will be relisted because she become a "now or never" case, or the transplant team decides she cannot be re-transplanted and sends us home.  We are not ready to be told "no"...as I've explained before, very few people get this second chance to begin with, and we are thankful that Tricia was given this opportunity, for which we are thankful.  It is amazing that Tricia has survived this long, through the winter, and until the team sends us home, we have some hope.  But, as I said, all the signs are pointing to the fact that a decision will need to be made very soon.

Tricia is not ready to end this.  Although ultimately I believe we will both be able to accept God's will for this situation, Tricia doesn't want to leave her family, and I certainly don't want to continue this life without her.  We need your prayer and encouragement that the next few weeks will provide us with the clarity to see things as God sees them.  We are praying that Tricia will hit her weight and strength goals and that the setbacks will cease so that she can be listed and transplanted as soon as possible, and if not that God will give us peace.

Thank you so much for your support over the years and now.  I will update the blog again when I can.

Nate

170 comments:

  1. Our prayers continue for all of you!

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  2. I follow you on Twitter and wondered if this might be the way things are right now. I hope and pray she does improve. I have been already doing that. I am sure one is never ready to leave a family or ever ready to let that loved one leave. I don't think it is wrong to hate sickness and death. It wasn't supposed to be this way. Without the blessed hope in Christ, I can't see how anyone could ever walk that road. I'll pray for you all. My heart is heavy for Gwenyth too. She is just precious and such a miracle! I'll pray you guys will have wisdom to prepare her if the time comes for her to let go. I hope you are strengthened knowing people are upholding you in prayer. It must be tough for you.

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  3. I continue to pray for you folks....

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  4. Sending prayers of peace, comfort and clarity!

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  5. We're sending prayers and love to you all the time - you are always in our thoughts & our hearts...my little ones pray for you every night at dinner and before bed too...we LOVE you.

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  6. Continued prayers for all of you. May you have peace as you walk this road hand in hand.

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  7. PRAYING!!! I know that God has His hand on Tricia and He knows what the future holds!! I will be praying specifically for peace and reassurance that GOD is in the midst and that He will do what He feels is best!!!!

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  8. You all are never far from my prayers and I am praying that yet another miracle (in the form of a 2nd transplant) comes your way.

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  9. My heart breaks for you, Tricia, Gwyneth, and everyone who knows and loves your family. You all continue to be in my prayers.

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  10. Prayers for all of you. Wishing you peace on your birthday. God Bless

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  11. I love you guys so much. Been praying from Uganda often, I know what silence on the blog means :( Praying that each day is full of sweet moments. Praying that Jesus is enough for whatever lies ahead. And that He continues to get much glory from your lives and testimony. Keep clinging to Him and each other!

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  12. I had faith, hope and prayers for you five years ago and I have them now for you. Praying for the miracle that you so deserve.
    Tara

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  13. Dear Family,
    I have followed your blog from the beginning. I am sorry to hear of the current situation. May God wrap you all in his loving embrace and watch over you. Miracles happen daily; I wish this for your family.
    Tina

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  14. These are the times when words fail to convey what is in the heart. Much love to your family. Asking for our Heavenly Father to guide you through the path ahead, He knows what will happen and He will give you what you need when you need it.
    I have a great deal of respect for the both of you and the grace with which you live out your faith in difficulties that most of us will never come close to understanding.
    Praying for miracles!

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  15. Praying for Trisha and the whole family!!

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  16. Your friends at Faith continue to pray for Tricia and your entire family. May God's comfort and hope continue to strengthen you all!

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  17. So many emotions right now. Much love to you and Tricia. Thanks for your example of long suffering and faith. praying for your family.

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  18. After my husband died 9 months ago, I learned to stop trying to find words for an unimaginable situation. I have followed your blog since she was pregnant with Gwyneth, and y'all have continued to be in my prayers since then. As a newly widowed Mommy of two children, your words have always given me hope and comfort.

    Hmm....I guess I was able to find something to say after all!

    prayers continue.

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  19. I am so happy to see an update, but I wish it were better news. This must be an incredibly hard time for you all. You are in my thoughts.

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  20. Tricia continues - as you all do - to be in our prayers. We will always remember your kindness to our family when we met at church a couple of years ago, and we will be lifting you up before our loving Father for provision and for healing. Thank you for letting us know how to pray.

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  21. I've been praying NOT to see this update. I will relist Tricia on our congregation's prayer list, as well as you and Gwenyth.

    Genevieve

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  22. I have been with you all since the beginning, and this was one of the toughest posts to read. My love and prayers are with you, Tricia and the children. You all have traveled quite a road. I am grateful for the faith you share, which will help along whichever journey is before you.

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  23. Praying for a miracle - praying for God's comfort.

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  24. Continuing to pray and trust with you!

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  25. Praying, as always, for you and your family.

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  26. I wish you and your family well

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  27. http://youtu.be/t5Cjt83wWDk

    This song plays through my mind , over and over, as I hold Tricia , you and Gwyneth close in my prayers today.
    With love from Kingston, TN
    ~Kim Waggoner
    W8k@aol.com

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  28. I meant to show the name of the song in my comment above..." This Is Not the End" by Gungor

    ~Kim Waggoner

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  29. Praying fior you and your family! Praying that God will give you strength to help you through your trials. He alone knows and He has a plan. May His Love surround all of you.

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  30. Praying for a miracle for your family!!!!

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  31. Praying, praying, praying!!!!

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  32. Prayers continue here! I am sorry Tricia has had such a difficult time. I have faith that God's plan is the perfect plan. Hugs and prayers!

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  33. Sending so many prayers. Tricia's strength and faith is such an inspiration to me.

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  34. You all are in my prayers daily and always...

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  35. My prayers are with you and your beautiful family. I started praying for Tricia over five years ago and will continue to do so.

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  36. I know you don't know me but I have been reading and praying for your family a long time. I wish you all to be wrapped in love and peace. You remain in my thoughts.

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  37. I'm praying for your precious family...and have been for over five years. I count it a privilege.

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  38. Even though the blog is quiet our prayers are not! Thank you for this update. Continuing to lift Tricia, you and your family before the Throne of Grace; before the Great Physician.

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  39. Praying so hard for you and your family. I cannot imagine what you are enduring. Praying for a 3rd first breath for Tricia <3

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  40. Hope. Love. Prayers. All being sent your way.

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  41. Praying for you and your family through out each day.

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  42. Praying for all of you.

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  43. I have been following you on twitter. I so hope things improve and I will be praying for peace for your family. I can not imagine what your family is going through.

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  44. have been praying for you all since the beginning and will continue to do so. Becky

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  45. A song came to mind while reading this post. It is entitled "New Grace" and the chorus says: Grace not yet discovered, grace not yet uncovered, grace from His bountiful store. Grace to cross the river, grace to face forever, there'll be new grace I've not needed before. Praying for God's grace for you and Tricia during this season of your lives. May you feel God's arms around you both.

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  46. Prayers.Love.Hope...

    Faith that Tricia is in God's hands.

    ToOdLeS.

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  47. I pray for your sweet little family even though I know God's plan is unfolding exactly as it is meant to be. Sending light, compassion and most of love your way <3

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  48. Still keeping you in my heart and thoughts ~

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  49. I am praying for you both from Michigan. Tricia will be victorious no matter the outcome. Praying for peace and that you are both (and G) surrounded by love.

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  50. I can hardly post right now because of the tears. My first thought this morning was to text Tricia to ask some of these exact questions, but something kept me from doing it, and now I read your blog. I'm not losing hope, and I am in deep prayer for your sweet wife. I love her so much!

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  51. Prayers for you and your family!

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  52. I am certainly praying for your entire family. Though I have never met you and probably never will, I have followed your story for years and continue to pray for Tricia. I can not imagine the emotions you all are going through right now. I pray that God's peace and love surround, protect and sustain you all.

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  53. Praying for and loving your family. You've come so far and fought so hard. My prayer is to see you all back home with Trisha healthy and being the mommy she is meant to be.

    xxxoox

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  54. I have followed your story and prayed for your family for about six years now... I started when we were stationed in Germany, all through our time in Texas and now in Turkey... I am heartbroken in this news but will continue to put my faith and trust in our Abba Father. Always.

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  55. I am praying for Tricia - and all of your family- every day!

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  56. Always praying for Tricia. Adding prayers for her family and her health care team.

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  57. I'm very sorry to read it has come to this. I wish for you both to find peace in your hearts at this very difficult time.

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  58. love and prayers for all of you.
    j from NE

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  59. my prayers are with you, God will not give you more than you can handle and he is with you every step of the way

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  60. Praying for Tricia and all of your family!!!

    Susan
    Redwood City, CA

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  61. Praying for you all, God Bless

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  62. Prayers for for you all. Everything will be ok.

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  63. I was praying five years ago and will continue to pray now. I wish nothing but God's blessings on all of you! Thank you for being such a wonderful example of faith!

    Emily

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  64. Your family is in my prayers.

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  65. We are praying for you every day...please know that so many of us care and you are not alone.

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  66. My heart hurts for you guys. Praying for God's grace and healing to Tricia's body. ALL OF IT! Love you guys and can't wait to hang this summer :)

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  67. Praying and posting your blog for family and friends to lift you up on this continued journey. May you have His perfect peace around you and within you. Our daughter is 16 and has CF. Tricia has been an exemplary role model for her, and Nate, you remind me that if it be God's will, He will have the perfect lover of her heart as well, to walk alongside her for the years she has ahead that God knows the number of. He picked you perfectly for Tricia to be a picture of Christ to her and love her so well. Many prayers.

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  68. Nate & Trisha,

    I am praying for you and was touched deeply by this post! I have a close friend here who has a heart transplant and he is a young man. We have been involved with their ride and it is so difficult. I can't imagine all you two have faced so far! I pray for the best!

    Scott Ranck

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  69. I have been following your blog from Norway over years, with CF and new lungs after tx. I am so glad to have this information, allthough I fell very sorry for this news. I hope from all of my heart that you will have peace with the way your situation will develope. Warm regards from Åshild

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  70. this had to be a very hard post to write, i appreciate the update, even tho it is heartbreaking. your all are in my thoughts & prayers. God bless.

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  71. Nate and Tricia,
    Thank you for taking the time to post updates during this very difficult time in your lives. Our prayers and thoughts are with you and pray for God's discernment and peace for you always.
    LaMar and June

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  72. Praying for you and your beautiful family! Janis

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  73. I've been checking twitter daily for updates. Will be praying for peace, not matter the outcome. My heart cries for you. To Him who is able....

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  74. I am so sorry to hear this news. I have read your blog for a long time. I am holding out and praying for another miracle for Tricia - that she has the second transplant and recovers fully to enjoy a long life with you and your children. I believe in miracles - my father was one. I am praying for you all.
    Alyssa

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  75. Prayers continue for Trisha and guidance for all involved in her care. I can't imagine how difficult these past months have been being away from her children and fighting this monster CF; you are an amazing team and wonderful family!

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  76. Will continue to pray for all of you. Our God is mighty to save.

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  77. ...continuing to pray. My love to you all. -Psalm 139

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  78. Nate - we have been following and praying since before your beautiful little girl was born! You and Tricia have been and are such a testimony to so many! Continue to stand strong - we are standing with you! Praying.. Susan

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  79. Praying with thanksgiving and praise. God has been so faithful and He will be faithful still. I can't begin to know what this will look like but I know that He has your family close to His heart. This is so much easier for me to write than for you to walk. But I know you know even in your darkest moments that God is good. He will be good. His grace and favor will continue to allow you the freedom to trust Him even when you can not see.So I offer up this 'sacrafice' of praise for all that He has done and simply for who He is. Asking for a miracle and trusting in His provision.

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  80. Prayers for your family from Ohio...

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  81. Prayers continue for all of you.

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  82. I've been following your blog since Gwenyth was born. Praying for you all...may the Lord be near to comfort you and give you hope. Thanks for posting so that we all know how to pray.

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  83. We have been praying over the years for all of you and will continue to do so. Am praying for you, Tricia; your husband, family and both of your parents. Our whole church continues to uphold you all in prayer also. Will pray for what you asked, clarity for all concerned. Dianna MacIntire

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  84. God bless you as you travel this heart-breaking path. May your love for one another and the love of our Lord carry you.

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  85. I only began following this awhile back, thru Burnie and Roxanne Staples, and I have prayed and hoped this day would not come to pass, to read this, is a sinking feeling. BUT, GOD makes these decisions, not US, so, I know GOD will reveal what is to be, and we will stand with you thru whatever God's plans for Trish are to be...much love to everyone....

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  86. I pray for Tricia so very often. I pray for her when I am running. I pray for her while I am worshipping in church.
    I pray for her when I am doing everyday things that are too difficult for her to do due to her diminished lung capacity.
    Will continue to pray for wisdom, peace, and grace for each moment
    Romans 8:17-39

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  87. Positive vibes from across the pond

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  88. That is very sad news. I was hoping as they say, no news was good news. You are in my prayers. Thankful with you for the five year and Gods will for more. In His Name

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  89. Thinking about and praying for you two. Richard and Lisa

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  90. Praying for you and your family. Met you on the Outer Banks of NC at your church. You also helped us celebrate our 40th wedding anniversary by taking beautiful family pictures that we treasure.
    I feel so bad for you that words cannot describe. I pray for your faith to continue to sustain you.

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  91. I've been praying for your family for five years. Now I will just pray harder. May God comfort and strengthen each of you. May He give your family a miracle.

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  92. Continuing in thoughts and prayers for you....

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  93. Praying for you.

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  94. The very best to you both.
    Tricia I salute you for your courage.

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  95. Nate and Family,

    Just a quick note to let you know that your family is in our prayers.
    Thou wilt keep him in perfect peace, whose mind is stayed on thee: because he trusteth in thee.
    Isaiah 26:3

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  96. We will be praying for you all. ( thanks for the update. It's nice to know how to be praying for you guys).

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  97. Thank you for sharing. For loving each other. And for displaying God's faithfulness. I'm praying for you too.... praying that God's grace and peace will be abundant and real to you all.

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  98. Praying for Gods will and your peace with whatever His will is. You certainly have shown faith in him and I know he recognizes that - although sometimes hard.

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  99. Praying in Brazil!

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  100. Our hearts are extended worldwide for all of you. Much peace and happiness, no matter how many days, weeks, months, years, or decades she's given on this earth. Tricia has changed how I act as a mother, realizing how precious life really is. She's a blessing. You're a blessing. Thank you for all you've done, and continue to do. Peace.

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  101. FIVE YEARS :D THANK YOU JESUS

    More Lord

    praying praying praying for you all
    May the Lord of love and peace beyond all understanding have His arms around you and your family very tightly.

    http://www.youtube.com/watch?v=S99SGfStdKI--This song was playing as I typed.. love cannot be silenced or changed by the storm

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  102. Thank you for this update. I don't even know you and I had tears in my eyes. Can't wait to meet you both in heaven if it's not to be on this earth. Praying hard here in Chicago for this sweet family. Our God is able--He is mighty--He is faithful!

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  103. I check in from time to time to see how your family is doing so I can know how to pray. I will be praying for wisdom for you as you and Tricia go through all this. May God direct the doctors to do the best thing for Tricia. May He bless you all the way.

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  104. Prayers continue. Peace and hope!

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  105. Praying for all of you!

    God Bless,

    Angela M

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  106. I have followed y'alls story for so long. Please know you are forever in our thoughts and prayers.

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  107. I've prayed for you since your sweet baby girl was born and will continue to pray...

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  108. I wanted to drop you a note to say how important your blog has been to me. I've been idly reading for years, so enjoying your little family, your faith, your love for Tricia. Then, 18 months ago, we had our first child after five years of trying. Unbeknownst to my husband and I, we are both carriers of the DF508 gene, and she has CF. The moment we got the news, I thought of you, and realised how God had been preparing my heart through your blog for years without me knowing it. I read this stage of your journey with such compassion and sorrow for you all, but also hope because our God is a great God. I hope that when it's my turn to go through this stage of Zoe's life I will trust God as thoroughly. Praying for Tricia and all of you today and in the days to come.

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  109. Thank you so much for the blog update. I am so sorry that things are not going better. I know your family is one of great faith and this will sustain you whatever happens. My prayers are with you all.

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  110. Praying for your family

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  111. Continuing to pray for you and your entire family.

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  112. Thank you so much for the post. I don't have Twitter or Facebook, so this is the only way I have to hear about Tricia. My prayers continued and will continue to be with you even though I may not get regular updates. As my pastor says, "God is good all the time, All the time God is good". We will hang on to this thought! God bless.

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  113. Have been following and praying since the night that Gwyneth was born. I've posted this before, but it bears repeating. "The things that tax His almightiness are the very things that we should be asking of God."
    -Oswald Chambers
    STANDING with you and asking God for a miracle. LOVE, LOVE, LOVE

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  114. Nathan, I'll be praying with you. xo

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  115. I have been following you guys since your daughter's birth and have prayed. I have checked your blog every single day since you were offline hoping that you would start up again. Praying for you all from South FLorida. As you know, we serve a very Big God...

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  116. your family has been in my thoughts since i left duke 5 years ago april 15, when donna lost her battle with cf. i say this with tears running down my face, i am praying for you all and no words can express how sorry i am that their is not a cure for cf. the people who have cf are such fighters and have given us so much pleasure to have known and loved them. my heart goes out to all of you. diane dalrymple

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  117. Loving you. Praying over you. Hurting for you and trusting with you. Please listen to this annointed song - just for you right now:Lord, you know I need A Brand New Touch http://www.youtube.com/watch?v=pgthAyMn28M Love and prayers.

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  118. Nate,
    I am not sure what to say and am not really sure there are "just the right words." I check everyday for updates and when there aren't any, worry takes over. On the other hand, I do respect the privacy your family deserves and needs. Do know that I am always praying for Tricia and the family.
    Elaine in Montana

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  119. Hmm, good job!I continue to pray for you folks....

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  120. Hmm, good job!I continue to pray for you folks....

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  121. A group of us at work here in Baltiore have been praying solid since Gwenyth's birth and will continue to do so until God's will is done. Know that we love you all and uphold you in prayer

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  122. I too remember checking updates during the tx to see how things were going and rejoiced with you! Thank you for taking the time to write update us on what is happening. We will be praying that God's peace and sustaining grace will be abundantly evident as you daily face each decision and challenge. Blessings on all of you!

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  123. been a very long time follower and prayer warrior. Prays will continue to go up!

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  124. I have been following your story for about 5 years and have grown to care deeply about your wonderful family. It hurts me that your journey has reached this point and I hope there is another miracle coming your way.

    You are truly an inspiration. Your strength and dignity is an example to us all!

    Much love and hope being sent your way!

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  125. Always praying for you and your family....

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  126. Good luck to Tricia. Keep fighting mama. I feel so badly for Gwyneth now as she didnt ask to be born into this sadness. Praying for her heart.

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  127. We are praying and I will enlist others. God knows the plans He has for you, plans for good and not for evil. But, His ways are so much higher than our ways and His thoughts are not our thoughts that sometimes it is hard to see the good. I will pray that each day He will show you the good and you will see His blessings, love and mercy even as the road is so hard and the night seems so long.

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  128. I was one of those hundreds or thousands of people who checked in and prayed hard during Tricia's orignial transplant. I've also been following you off and on since that time. My thoughts and prayers are with you; praying for another miracle for you!

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  129. Nate,

    I just found your blog. I ache for y'all right now. Please send her our love from Raleigh, NC.

    Love,
    Frances & Skip

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  130. Thank you so much for the update. Although I've been following on FB, I lose track of the updates on your pages & have felt a little unclear about what's going on. Praying fervently for both of you (& Gwyneth!) Love from Texas!

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  131. We will be praying fervently for Tricia and her entire medical team -- that they would be wise men and women who call on the Lord first in decisions such as this.

    The B Family in Louisville, KY (Southeast Christian Church)

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  132. I've followed your blog over the past 5 years and am sorry to hear of Tricia's current health situation. I will pray for you every day and hope that God can help you find the peace you need. Many prayers and good wishes for your lovely daughter too!

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  133. Praying for you and your family to be washed with the peace that passes all understanding.

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  134. My prayers continue. Whatever the outcome, may God's Peace be with all of you.

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  135. I've been thinking about you and your family and hoping this was not the reason for the silence on the blog. I will continue to pray for you all.

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  136. I've been thinking about your sweet family and hoping this was not the reason for the silence on the blog. I will continue to pray for you all.

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  137. praying for you and your lovely wife and children. I hope to hear updates soon, but also understand your need for privacy.

    Praying for Tricia and hoping her health improves enough for surgery.

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  138. I have been following the story of your lives for more than 5 years. While I no longer have the ability to follow the current chapters of your story, I wanted to let you all know that I am keeping you in my thoughts and prayers. With hope and prayer. Blessings.

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  139. Nathan, I have been following along since Gwyneth was born and always praying ,hoping for the best for your family. I see, today, that your twitter account is now private. I don't twitter and don't think I would be very good at it but I have appreciatd being able to keep up with you all. I guess Since I have been around for 5 years now I want to check on you all ,to see your photos,read your opinions and to see Gwyneth doing so well .
    Is there a way I can still follow without signing up for a Twitter account. I can just check here from time to time.
    I pray that PattySue can gain the necessary weight and hold on for another transplant and chance for more wonderful years for you all to be a family.

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  140. Lost my Link to you guys found my way back. Thinking of you daily and hoping that god has you in the palms of his hands and angels among you guy.

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  141. Hi guys...thinking about you and hoping all is okay. Was following your Twitter feed but can't see it anymore. I don't have a Twitter account but I could still see the tweets. Hope Tricia is feeling well. God Bless

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  142. Thanks for the update. Praying daily for her strength to increase so she can gain weight and strength. Prayers for you and the family. Prayers for the DR to guide them in making their decision. Praying in KY.

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  143. Praying! I pray she regains strength and is able to be re-listed.

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