Monday, April 13, 2015

Three Doctors Give Opinions ~ Another Update & Some Blogging Notes



The doctors, nurses, social workers, and transplant recipients associated with the UCLA transplant program are the most positive-thinking and optimistic people I have ever encountered. My husband's attending physician, the surgeon, the optimistic and caring Dr. K., led me to believe that this last surgery would really take care of whatever needed to be taken care of. He also had a long talk with our friend Tom, and said pretty much the same thing. 


So when I walked into the ICU yesterday, I expected something better than what I saw. I have seen my husband sedated before, but yesterday, it was different. It was easy to see that the nurse, they change nurses most every day, so I had not met her before, it was easy to see that she was deeply touched by my husband's struggles. We were all wondering how much he felt, how much he was aware of. When he has been awake, he has mouthed (he can't talk) to both Tom and me, "help me, help me." That alone is certainly enough to break my heart.


Yesterday, as they were "rounding" as they now call it when doctors do the rounds, checking on patients, the second in charge, Dr. G., comes into the room and proceeds to tell me what I already know: My husband is the most ill person, by far, at the UCLA Liver Transplant ICU. Neither the procedures done, nor the antibiotics have cleared up his massive infections. Since the new liver was transplanted into a very sick environment, it is not performing all that well either. 


Then he says, "but we are doing all we can and we are not giving up yet, so don't give up hope." I tell him that I don't like hope, that I'm a realist, that there's no need to sugarcoat anything, that I prefer the truth. "We will continue to treat your husband, we are not giving up, and if/when we know we can no longer help him, you will have a decision to make," says the good doctor. I tell him I appreciate his honesty. Then I look at all these lines, dialysis, stents, bags -- and I think bad thoughts about modern medicine. 


Then doctor number three wanders in, an older guy, a liver specialist, who confirms that my husband's liver, while not failing, is having problems that don't seem to be getting better. But he, yet another optimist, sounds like he believes everything will be OK, my husband will get better. Then, on his way out the door, he turns around and says,"and when he does, of course, he won't remember a thing of all this." The nurse, Tom, and I look at each other, astonished, since this is what all three of us had wondered about earlier


Finally, about blogging. I will continue to post these updates, hopefully mixing them up with other news and pictures from the canyon. 


I have decided to use the Reply to comments funtion from now on. I feel the caring that goes into each and every comment and I am touched by what you write. So, using Reply will allow me to communicate more directly with you. And it may just alleviate some of that guilt you tell me not to feel when I don't have the energy to read/comment on your posts.

So, if you have the time to come back.......

And thank you so much for being there for me. 

I just noticed today's date. Tomorrow, it will be two months since we took my husband to the ER and all this started. I'm trying to remember what his voice sounds like........










80 comments:

  1. i hate that things are not going better - or as well as the medical professionals continue to believe. it must be so difficult for you. bless your husband for all he is going through.

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  3. Thank you, my friend. I am amazed that my husband has survived all this. As for me, it is getting more difficult to cope. But then I look at the Fluffmonster and his Badass sister and I know I have make it through, one step at a time.

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  4. You don't know me and I don't "know" you... except through your blog and I can't even remember know how I found it. I just wanted you to know I'm touched by your struggles. Whatever the outcome, you have the necessary skills to arrive at the other side with much grace and courage. Sending you good thoughts.

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    1. Thank you for the good thoughts, Beth. I have too have been touched by other bloggers and their struggles in life. I have made some of my best blogger friends that way. Thanks for stopping by.

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  5. As your husband gets weaker, I hear you getting stronger. Hope springs eternal...

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    1. I don't know about hope right now because every time he gets better and my hope is strong, something else happens and he gets worse again. Thank you though, for your caring thoughts and for stopping by so much.

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  6. Always something more. You are a brave lady. So glad you have the dogs and your wonderful place to come home to, to give you a little peace and much hope. The last picture of your dog is the best! He is telling you to be strong, not give up, but rest all you can.

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    1. All the dog pictures are a few years old. I don't think I even noticed that last picture before and I agree, it is a good one. Aren't I lucky to have him to hug?

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  7. every single one of these photos of Samson are wonderful. each one he has a different LOOK on his face. and i love all those looks.
    every time you update us I feel your hurt, your heart ache, your strength, it all comes through at the same time.. 2 months is to long to be under this kind of stress, yet you are doing it and so is your husband. prayers for healing

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    1. Thank you for your prayers, Sandra. And I value your friendship so much. I'm hurting so much right now, but I think I did the right thing to update you all. And then to decide to use the Reply function to talk with everyone a little. It helps.

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  8. You and I are very much alike, I think. I don't like sugarcoated either. I don't like loss of quality of life and I sometimes wonder about physicians who are taught to never give up (which is appropriate, I guess). Your husband seems to want to fight on and you know him well enough -- better than anyone -- to know when enough is enough. I am amazed by his strength and his struggle; it is more than I would want to endure. People are so different in what they want in these situations; you are doing a good job of balancing reality, his wishes, and compassion. Two months. Wow.

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    1. Hopefully, all doctors take saving lives seriously. I know the transplant doctors also feel that a new liver is a gift to be honored. Which of course it is. They must have known they took a big chance once they opened my husband up and saw the extent of his infection. Which primarily was in the liver, and most likely caused by the scope and the stent implanted by other UCLA doctors. Without the transplant my husband would not be alive now. If this liver fails, he will not get another one. I am not at peace with anything right now. Thank you for stopping by and for thinking of us, my friend.

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  9. Samson is a beautiful boy; and you have the strength and courage of his namesake. You and your husband have had so much to bear, may the optimistic doctors be proved correct.
    In the meantime, take comfort where you can... sending warm thoughts and hugs.

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    1. I'm afraid my strength is fading, at least today. But my decision to communicate this way with all you kind people who stop by here with encouraging words, with prayers, and healing thoughts will help me. This I know. Thank you, Jacqueline.

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  10. There is nothing more to say except WE LOVE YOU BOTH!!

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    1. Dear Fran, I meant to send an email to you and Bud. I owe you that much, but then the thought got away from me and I never did. You have known my husband for longer than I have and I know how much you love him, and he you. Both of you. Maybe the optimistic doctors will be right, there were two of them, after all.

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  11. I agree with Jacquelineand , , , adding extra thoughts and hugs . . .

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    1. Thank you, I feel the hugs and the good thoughts.

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  12. Our dogs help us comp with life's most difficult challenges. Samson so obviously loves you with all his being :-)

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    1. Yes, Samson loves me. He has brought up his little sister, Faith for me. She will be one year old at the end of this month. My husband got her after he was diagnosed with cancer and named her Faith. Of course I haven't had much energy for dog training, so Samson took over. Samson protects me from her exuberance and jumping on me by gently flipping her over and making her behave. It is remarkable to watch. Thanks for stopping by again. I think with our love for dogs that we will become good blogger friends.

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  13. Samson is a fluffmonster of many faces, isn't he? It is true that all these events which are etching themselves into your memory with acid, your husband will not remember when he recovers. It is amazing what the human heart and mind can withstand and go on -- both with you and with your husband. It is not given us to know the future. All we can do is stay the course and hold our ground (which the little cub, Hibbs, tells me sounds quite impossible to do both at the same time!)

    I wish I could send healing your husband's way. Medical science is miraculous, but it is the human spirit that pulls up through healing. I think your husband is a fighter. May strength and inner peace be yours when you need it most, Roland

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    1. As my strength and peace have faltered these past few day, I know pat myself on the back because I was so smart this morning. I knew I had to do something, and since our town is not exactly running over with psychologists to talk to, I decided to do this. First read, then think about, then reply to all my friends' comments. It works, I feel much better now. As I have worked my way down the comment listing. Our friend Tom said the same thing to me yesterday, as we sat outside at UCLA: Stay the course and hold your ground, not exact words, but still. I must visit with little Hibbs again. I love that cub. Thank you Roland for your friendship. I value it immensely.

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  14. Inger, what a living "hell" you and hubby are experiencing. For that, I am sorry. As I have told you before, you are so strong and although it is wonderful that Tom was with you, you have every right to question modern medicine. Remember, Inger, if the doctors feel they can do more, they will...they always do!...:)JP

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    1. In addition, in the case of a liver transplant, I can't help but feel success is at stake. Both in a good way: Honoring the donor and the precious gift. And a bad: I'm sure there are statistics, success rates, and so on to deal with as well. And finally, he got his infections at UCLA, through one of their procedures. Of course I have no idea how they reconcile that or if they even think about it. I have to work hard to contain my anger about that part of this tragic journey. At least for now. Thank you, J. P. for that card, which I love, and for this comment, which sort of set me off, but in a good way.

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  15. Oh Inger he sounds so incredibly sick! I pray for you both. And for the doctors and nurses who are treating him. The pictures of your dog are wonderful! I am glad the doctors are giving it to you straight!

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    1. Yes, dear Paula, he is so very ill. To be the most ill in that large ICU full of people whose livers have failed, says a lot. Thank you for your prayers, for becoming my friend, and for caring about me and my husband. It was this time last year that we met, during the A to Z and I felt so bad for you and for what you were going through. Life is strange, isn't it?

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  16. It is bittersweet to see photos of Samson integrated with such sobering news, Inger. Samson represents Hope and Faith of course what her name says. I totally get where you are coming from and it is a great burden to bear. When hubs was sick, I cared about nothing else. He was the only thing that mattered. With all of the caring that is being shown, your husband must get better. People do survive, we just have to adapt to a changed person somewhat, and if they don't remember the tough times, so much the better. Hugs and healing thoughts being sent to you, Inger.

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    1. Thank you, my friend. I know you have been through so much with your husband this past year. I think about you often and hope things are going as expected at this time in his recovery. All three doctors said they had not given up, that they are doing all they can, and of course they can do a lot. It is just very difficult for me, as a lay person, to know when a lot may be too much and therefore, not enough. If that makes any sense. So I have to place my trust in them, with some reservations. Thanks so much for your support and take care.

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  17. Dear Inger, I am sending from miles and miles away prayers for healing. Bless your dear husband for all his struggle in this moment.
    So lovely all photos of adorable Samson. He express so much love and comfort to you.
    Take care of you my dear friend.
    Warm hugs and much Love to you.

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    1. Dear Sonia, From miles and miles away, I feel your prayers, your concern, and your healing thoughts. I don't know how that works, but I do. Replying to comments has been healing for me this afternoon, as I was just about to lose it. My strength was truly fading. Now I feel better. Thank you, my friend. Samson is a great comfort.

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  18. Hang in there Swedish Goddess & beloved pups!!! its always darkest before the dawn, and that corner still needs to be turned! In my humble opinion, Doctors dont give fake Hope - your husband is not letting go, and doesnt want to - that takes more then just what a physical body can do...Although his body is sick, his spirit is not crushed - If the ones who are taking care of his physical body say there is hope, then there is Hope!

    Wishing you peaceful dreams when you do finally get to rest, and once again - please bury your nose into that soft fluffy white fur of Samsons - and dont forget Faith! ;)

    XOXOXOX

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    1. Hello my beautiful Feral Friend, and thank you for stopping by with these wise words. People, like you, who live in and with nature are so wise. That much I know. But I am still afraid of Hope, so I will hang on to Reality, which is that he is not letting go and he is strong, both in his will to live, and in his physical body. Samson is a wise dog now, and a huge help to me. Faith is badass, but she listens with great intent. She really wants to understand. I think she will grow up to be a wonderful dog too. Thanks for everything and for giving Buttons my address. She sent me some lovely stories. I tell you, that woman can write. How blessed I am to have met so many wonderful friends on the blogs. Who would have thought?

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  19. My heart hurts for you. Like Arlene, I sense that "As your husband gets weaker, I hear you getting stronger. Hope springs eternal..."

    Thank you for your Samson photos. They soften the toughness of your journey.

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    1. Thank you, Susan, I am so glad I decided to read comments and then write a reply this afternoon as I was really feeling very, very bad. In an almost scary way. And I do know that I must take care of myself. So I am so glad I came up with this. It has helped me a lot. The Samson pictures are all old. I am glad I had them to share right now. For the rest of the day, I will focus on one thing at a time not think to much about yesterday and the hospital and my husband's situation. Then tomorrow is another day, and who knows what it will bring. Thank you for your visits and comments.

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  20. Inger, we share so much on our blogs, and care, love and support from a friend far away or close by is the very thing that will help right now, To put it into words is hard, as I did after Hugh's heart attack, and stent surgery. Facing reality is the way I manage, and I have always asked for straight words, no sugar coating will make the outcome any easier. Let those 2 bundles carry you through these rough days. Much love, and caring thoughts. from NZ
    .

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    1. Dear nancy, this is helping me so much. I had no idea when I started blogging, no idea that one could make friends this way. I know you have been through a lot and I hope Hugh's health has improved and that you don't have to worry as much. Thanks for the love from NZ. It may come from far away, but I feel it, for sure.

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  21. I see myself as a realist as well, Inger.... but as long as breath is left, I feel there is hope. In 1990 my mom lay in Georgetown Hospital on a ventilator for over 3 months due to complications from a quadruple by pass surgery. Her problems were many and severe from her diabetes. We had finally given up and said goodbye, when suddenly she made a turn for the better and slowly recovered giving us three more years together. Living through that ordeal made me realize that as long as there is breath, there is hope. I know too that as a realist, we are preparing ourselves for what is likely to be. But we hope for better. And sometimes, it just happens. Gracie and I just prepared a little package for you and the dogs, nothing big ... just a thinking of you. Should arrive Thursday or Friday via Fed Ex. Thank you so much for the updates. This is heavy on my heart...

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    1. Dear Bobbi, What a remarkable story about your mom. Thank you so much for letting me. Miracles do happen and I believe in them. I think I am just so tired of getting my hopes up when the test results show improvements, only to have them squashed again. It is very exhausting.

      How nice of you and Gracie to think of us with a pressie, as Puddles would call it. What happened to Puddles, by the way? She would have so cheered me up now. I hope she's OK. That is so kind of you both. I hope Gracie gave her pressies a good lick so Samson could finally get a whiff of what she smells like. I'm sur ti will be perfume to his nose. He misses her a lot. So ready for an older woman after raising puppy Faith. (If someone else reads this and doesn't know who these dogs are, I am sure they will scratch their heads!) Thanks Bobbi and Gracie!

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  22. I came on here before going to bed to see if there was an update from you. All I can do is send loving wishes across the sea. Your dog is so gorgeous and cuddles she must be a comfort to have around. X

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    1. I can't even imagine that you, so far away, would think of us and go and check before going to bed. I so wish I could put down some great news. Thank you for being there for us.

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  23. Dear Inger, those desperate cry for help that your husband mouthed hits to the heart. He must feel terribly sick and in pain... Two long months of agony and even longer is way too long for anyone and for you too.... I know that you are hurting so much too and I wish I could help. It's must feel like a bad nightmare that you want to wake up from.

    Your husband is a strong fighter for lasting this long and he wants to live. He's not giving up. You are strong too wether you think so or not but I think that you're burnt out right now. I hope that someone is taking care of you beside handsome Samson.

    I'm keeping you both in my prayers and I'm so glad that you allow us to share in your pain and struggles. It's the least we can do.

    (((Warm hugs my friend))).
    Julia

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    1. It is a difficult journey, but somehow all of us find some strength to do what we have to do. This week, I am exhausted and I have decided to stay home and go back to LA on Sunday. I know I have to take care of myself too. And the dogs. The both need shots and Samson needs his eyes checked, so I will plan on taking care of that. Thanks, Julia, for your concern and for your prayers.

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  24. Inger, I sincerely wish that things were going better for your husband. Please remember that you have people out here who care about what is happening to both of you. Prayers.

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    1. Thanks for your prayers, Michelle, and for your friendship.

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  25. Oh Inger we are all here for you, never forget that my friend. I think the words of hope reality and love are written here from all who love you and support you. Different ways of handling things during these times seems to be what people have to do to get through the tough stuff. Everyone has a way that works for them. Your friends speak their ways and all this support and courage is just what you need. I like Feral believe they (the doctors) do not give false hope. Sending hugs hope and reality. Lots of hugs.xo B

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    1. Dear Button, I don't really believe doctors give false hope either. I just think some are more positive thinkers than others, hoping until there's no more hope that they can save a person's life. I think that is a great quality to have if you are a doctor. However, I think when you talk to a relative of a very ill person, it is good to present all sides of what the patient is up against. And I do believe in miracles. Thanks for the hugs and the love, my dear friend.

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  26. Your husband must be a real fighter to go through all this. Wish there were some words to make you feel better and for your husband to get well. All I can do is to keep praying for you, him, and the doctors. I continue to say a prayer each morning.
    Hang in there.

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    1. I have read your Bible verses to my huband, so you gave me words that were inspiring. Thank you so much for those words and for your continued prayers.

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  27. I'm glad you are keeping us updated so that we can keep your husband in our prayers. And I love your sweet Samson photos. Take care of yourself and try not to worry about things. I've read some of your comments here on your post and you are so caring and sweet to everyone. What a remarkable lady you are. I'm glad we are friends. Sweet hugs, Diane

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    1. Dear Diane, I think all of you who leave these wonderful, encouraging, and prayerful comments are the remarkable ones. Who would have thought when I started blogging that there was a community out there, a community that I somehow was blessed to have become a part of. A community of such loving and caring friends. Thank you for your kind words though and for your prayers.

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  28. Gosh I am still here and praying. I am asking for the best decision for him according to the will of God. You hate him to go thru something like this - yet he may make and never remember a thing. I am also praying for you. This has to be so incredible hard. sandie

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    1. Dearest Sandie, you are so sweet. I hope all is going well in your life and that the changes turn out to be positive ones, even if I will miss your blog, your grandson, and his dog. Thank you for your prayers my sweet friend.

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  29. How horrifying and helpless to see your husband mouth those words. You both have been thru a virtual Hell and I am praying that he does comes out of this with no memory of this ordeal. I only wish they could give you the same promise.. Continue to be strong and lean on those who care including that handsome Samson.

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    1. Dear Patti, yes, it was horrible to feel how helpless my husband felt when he came to. It is definitely easier for me when he is sedated when I visit. When he's awake, he is frustrated and angry and I am sure he doesn't have any idea what has befallen him. I don't feel very strong right now, but I have decided to not go back to the hospital until Saturday. I need to get some rest and get my house in order here, so I can funtion OK.

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  30. I can't imagine how distressing it is to see your husband mouth those words. I know what you mean about modern medicine. While it can do wonderful thing, it can also feel like a curse sometimes. I will share the doctor's hope that your husband will recover and not remember this ordeal, what a gift that would be.
    I am thinking of you and wishing you strength and love to get through whatever comes next. Take care and many hugs to you.

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    1. Thank you so much, Julie. I have to trust the doctors here, I'm sure patients have woken up months later and not remembered a thing. When my husband has been semi-aware, I have told him that his cancer is gone and that he has a new liver, but I'm sure he has no memory of that.

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  31. You're going through something we all do if we stay married long enough. My wife had a brain tumor 15 years ago. My experiences were similar to yours. She did recover though, so there is always that chance.

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    1. I am so glad that your wife made it through her cancer. She must have been young then, 15 years ago. Because my husband is six years younger, I always hoped he'd be the one to take care of me in my old age. And I certainly never imagined anything like this. Thanks for stopping by and for caring.

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  32. Dearest Inger - thank you for taking the time to update us and give us some wonderful photos of Samson and your Canyon .. I'm sure Faith is there too ... You express your thoughts well ... and know that it must be such a very difficult time ... much love and with many thoughts from here .. Hilary

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    1. Thanks Hilary, I wrote you an email, so I will leave it at that. I hope you are having a great time with the A to Z, and I hope to go back and read your posts.

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  33. Hello Friend,
    Thank you for sharing with us. I will continue to pray. You have been so strong, I will continue to pray for strength for you.
    I will continue to pray for your husband, the doctors and nurses.
    xx oo
    Carla

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    1. Dear Carla, thank you so much for your prayers and for caring. I don't feel very strong, I just know I have to stay calm.

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  34. Since there are medical miracles from time to time don't give up all hope. Praying the doctor is right. Love the pictures of Samson.

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    1. Thanks for your caring comment. I didn't mean I have given up hope when I wrote I am a realist.I may have to clarify that in a future post. It's a miracle t me that my husband is still alive after all he's been through. So, yes, I do believe in miracles.

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    2. I know you have not given up hope, but it is good you are preparing for all possibilities. Give Samson an extra hug from me

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  35. Two months that probably feels like 6, I'd think! I am grateful to hear that doctors communicate with optimism. I believe they really do believe there is hope, Inger, or they couldn't come to work each day and face loved ones who are waiting so patiently for signs of improvement. This has been unbelievably grueling, and with each day that passes I'm more convinced your hubby is extraordinarily strong. You do have our prayers, Inger. We care about you and your husband and so badly want to hear that infection is gone! Soon, I trust. I am hopeful, right along with your doctors. oxo

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    1. Dear Debra, thank you for this caring comment and for your prayers. The transplant doctors have all told me that, in their field, they have to be optimistic. And they are wonderful and caring people. And it is a great help for me that I can trust them. And I have come to love the hardworking nurses that take such good care of my husband. The one last Sunday teared up after that straightforward doctor left and she saw how difficult it was for me to hear what he had to say. This is pretty much a one day at a time process, even though it is difficult to not think back or forward.

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  36. Those photos of Samson are so beautiful - ..!! I'm glad you have such a wonderful companion w/you while you and your husband go through this extreme situation. Just know I along with so many others are praying for his healing and your strength and ...well I just don't have the right words to convey how much I feel for you and what you are going through.

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  37. Thank you so much for caring, Sandy. It is amazing how the caring of my blogger friends comes through in each and every comment. It is a wonderful thing, indeed.

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  38. Hello Inger. And thank you for the update on your husband.
    My goodness, two months. And you are still able to share and reply here. You have obviously switched into a 'gear' so as to stay as calm as possible during this very stressful time. I know this must be exhausting for you.
    And look at Samson keeping us company during this post and softening the stress for us as we read. He is a beauty for sure and I am certain an angel for you when you are home. As is Faith too.
    I would hold on to that last doctor's prognosis.......not in a unrealistic way.....but in a trusting way. They have seen everything and we must trust what their opinions are.
    Sending you wonderful Nova Scotian 'spring energy' to get your through this, Inger. BIG hugs from the 3 amigos!!

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    1. Thanks for this long comment, dear Jim. You, Ron, and Sophie are among my longest and best blogger friends and I love to hear from you. I will be by soon to see some of your spring time. Last time I visited, you had snow.

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    2. I guess I should have said "oldest" friends. It's late for me, I'm tired and I guess my Swedish kicked in.

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  39. Continue our prayers for you both.

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    1. Thank you for your prayers and for leaving a comment.

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  40. One day at a time Inger. You are a very strong woman and I am glad you have your beautiful pups to keep you company. I hope things turn around for your husband very soon.

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  41. Love to you and your hubby. Love the Samson pictures. He has such sweet expressions. Many blessings to you.

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  42. It's been a long time since a last update...not that you should be worry about keeping us informed. I just wanted to let you know that you've been on my mind and in my prayers. Today you've been on my mind even more...so I'm concerned and just wanted to leave a hug. I'm so aware that two months can feel like two years. oxo Debra

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  43. Inger, I'm hoping everything is going well for your husband and you. You are both in my prayers daily. ~Jeff

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Thanks for leaving a comment.. ~~ Inger

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