So, I’ve got this ‘list’ of people I meant to call back today, and just haven’t got to it. Not so much that I couldn’t as much as I chose to do other stuff. I worked in the morning, and in the evening played some video games with Ty, and watched a movie with Minnie before bed. I’m sorry I’m not real chatty on the phone or otherwise, I know I should be, but… Well, I’ll add it to the list of things that this family is working on.
Minnie is working on ‘being tough’ even though she’s kind of fed up with going into the O.R. We talked tonight about how its necessary, and also that these next couple trips in are not nearly as invasive as before. Last time she went in, they didn’t close (sew) her up. Instead, they installed a wound vac which involves placing some special dressings in an open wound and connecting a vacuum, which allows them to remove the petri dish that was there before. It also means that the incision can’t dehis. Sort of a preemptive move. The idea, is we can continue with antibiotics, and clean out and irrigate the wound and around the spine every 3-4 days to eradicate the infection. Once the infection is cleared, she can be closed back up. She has several catch-22’s going on. It seems very likely that her gut somehow seeded (bacteria moved from the intestines to the blood) this infection. So, the possibility for recurrence seems likely, which means she may have to have the rods removed one day, since they could become a colonization stronghold. This means more immediately that her intestinal health is pretty important. Having general anesthesia every 3-4 days is pretty much the opposite of what you want for intestinal health. Her Iron levels are low which would explain why peripheral blood flow seems poor (cold hands/feed/legs), and blood flow is what takes that IV antibiotic to get to the infection, but… iron supplements will cause more trouble with motility in the gut. Anesthesia causes everything to sort of ‘fall asleep’, which is no bueno, but also means her appetite is diminished (although she did get hungry today) which also doesn’t jive well with immune response. It didn’t help that the g-tube feed she got earlier today all came back up.
There is also symptoms from the wound, infection, and lack of bowel movement. Fever, bloating , pain, etc. We’re trying to find a balance between comfort and protecting her liver/kidneys, and keeping in mind that it seems that with several of these things if we treat one thing, we raise risk/problems with another thing.
I was tempted to post pictures of Minnie’s back, but after some thought on it, I don’t think I will. If you’re interested in seeing how the wound vac works, take a look at this video showing how to apply/change a wound vac. Keep in mind that this is not Minnie, that Minnie’s wound is the length of her back, and also that if your squeamish, you should pass on the video.
So, I mentioned that we’re working on some things… Minnie is being tough. Tyler, today learned how to ‘put on a good face’ now, and cry in the hall later (critical parenting skill). He’s doing a really great job so far of keeping upbeat, and showing loving kindness to his sister. Rachel is working on maintaining a good attitude and sanity (most women would be quackers in half the time in the hospital.) She’s doing a great job too. I can tell she’s really tired, but she is keeping it together really well. I’m hoping I’ll be able to relieve her long enough to give her the recharge she needs. I’m working on making sure my words are uplifting to my wife. Its all to easy for me to point out what could be done different/better, and never say anything about the successes, and its something I know I need to do better on. I’m also working on talking with friends and family better. I know I tend to be terse and keep to myself, as part of my ‘no drama’ policy, but… Life has a way of undermining our little ‘policies’, and we have to learn to improvise, adapt and overcome.
Let me share with you what God has been showing me today. I’ve been faced with some scary stuff, had a miniature breakdown at work, I’m tired and miss my family, miss ‘normal,’ and what I see and hear all around me is that I need, and can, know joy in the middle of it. Now, its important to understand that Joy is not the same as happiness. Happiness is great, but never lasts. Joy on the other hand, may not have that spiking high, but like a wellspring is a sustaining flow. I listened to an aspiring Opera singer at the hospital today, with a simply beautiful instrument, I looked outside and awed at His creation, and realized that God is good (all the time.) Its tough, because Minnie is usually our wellspring of joy, but she’s starting to get a bit discouraged. Her expectation was to be done with this by now, and she wants to feel better. God is reminding me that Minnie has a source for this joy (and if you know her at all, you know the joy I’m talking about), and that He wants to give me the very same joy, not just for my enjoyment (pun?), but also as a responsibility. There are so many people that need His joy in their lives. Right now, my girl needs that joy again, and I’ll do my very best to reflect it for her, but also the so many people we’ve met here and will meet. People in your life need that joy too. Folks are facing financial hardships as they look for new work, they are facing relationship catastrophes with family and loved ones, they face addiction and disappointment. The world offers so much sadness… They need His joy. If you’ve met Minnie, you know her joy. That very same joy is yours to have too, and its also your responsibility to show it to others. Don’t forget to. Make sure you go to the Original Wellspring, and get a daily dose. You’ll run out of gas if you try to do it on your own.
Please continue to pray. We’re at a point where we need a lot of things to align simultaneously. We’re seeing some of the staff here feeling a bit discouraged. We’re ready for a big shot of joy, preferably with a big change of health. Please ask boldly for Minnie to recover soon.
Nehemiah 8:10
10Nehemiah told the people, ” Enjoy your good food and wine and share some with those who didn’t have anything to bring. Don’t be sad! This is a special day for the LORD, and he will make you happy and strong.”
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.
We are fervently praying to our Heavenly Father, Jesus our Savior & the Holy Spirit to enfold you all with His love, and to cover Minnie with healing, protection and a refreshing of her soul. Love mama/mema & papa/Larry
Josh, Thank you for your post. We love your family dearly. We continue to lift all of you up. Please tell Minnie hi for Amanda and tell her that she is the first person Amanda asks about when she gets home from school each day. She holds a very special place in Amanda’s heart that not many people share. Please give your amazing wife a hug for me, and tell Ty that my dad is specifically praying for HIM everyday. And, Josh, let me say how much I respect you and your ability to minister to each member of your family. You were designed to be their daddy and husband and you do an amazing job of it.
Thank you for this, Josh. I am praying. Oh, how I am praying.
Rogers Family, thank you for such honesty. Remember that tears are not a sign of weakness they are a sign of a sensitive heart. God puts much value in a sensitive heart.
To say my heart hurts for you is an understatement. I am so glad that God hears our prayers no matter where we are. I wish I was closer ( I would be like rach and do something crazy to make you all laugh).
Because of the Lord’s great Love we are not consumed, for His compassion’s never fail.
They are new every morning; great is your faithfulness.
I say to myself, “The Lord is my portion; therefore I will wait for Him” Lamentations 3:22-24
It is in times of great discouragement that we grow in Him the most. Love you all so much!
Thank you Josh for taking time to update us on what is happening with your family. We are praying for you guys, and I hope that you can feel the prayers that are being lifted up for you guys from people around the world.
The honesty that you and Rach have expressed through this blog is so refreshing and beautiful. I cannot even begin to imagine what you are both feeling at this time, but I know that you are using every moment to glorify God and most people would not be able to continue to do that.
I love you guys and hope to hear today that Minnie has her sparkle back and things are improving
prayers continueing for all of you. Especially for healing and health for your Minnie….sometimes I feel like she is ours too although we have never met.You have a very special boy. Ty must be the best brother a little girl could ask for…and you and Rach are amazing. Your words today have been a blessing to me and I will try to show my joy to others. Wishing you rest, strength and God’ blessings.
we have so many people praying. I am glad your family is finally together. Thanks for the update. Minnie has been on our minds’ nonstop. Audrey keeps asking to see her. I wish we could just hop on a plane.
We walk by faith and not by sight.
The Journey is just as important as the destination
Praying and praying
We love you all
I’m glad for the update. Thanks. I’m also glad you and Ty can be up there with the girls. Love on you 4, God’s healing on Minnie, the Spirit’s palpable love on your shoulders.
Praying for Minnie’s joyful spirit, healing and endurance for her and your family.
(papercrafting friend of Lagene’s)
Minnie’s joy is an intoxicating joy that can only come from a heart that is filled with the love of God. I am so blessed to spend time with y’all & join y’all in prayer. Josh, Rach, Ty, & Minnie ~ you are each doing an incredible job & I am so inspired by your love & faith. There are so many people “here” to hold you up when you’re feeling weak and tired. Keep pressing on, we’re here with love and prayers (and lots of extra fun prizes too). 😉 <3
Praying for ALL of you. May the peace of God that passes all understanding be yours today.
“Joy” Jesus, Others, Yourself…. Thanks Josh We love you all and are praying for each of you… We also miss you all. Hope to be able to see you all when this is over. Let us know if we can do anything, although I do know pray is the most important and the best thing we can do. The up dates help us in our prayer… With much love, YaYa
Psalm 43: 4 Then I will go to the altar of God, To God my exceeding joy…..
Since “Embracing Joy” has uplifted you, I found these verses in Psalms about Joy to share with you.
Though Minnie’s priceless sparkle is gone for today, I pray that something will happen to help her find “HOPE” today.
Dear Josh et al, What a special family you are!! God is truly using you in all that is being done and said. That said, I know it is harder than I can imagine. I pray that God will give each of you a special measure of His grace. Music is often the tool that reminds me of God’s involvement in life. Here is a verse from an old hymn. “Day by day and with each passing moment, strength I find to meet my trials here, Trusting in my Father’s wise bestowement, I’ve no cause for worry or for fear. He whose heart is kind beyond all measure, gives unto each day what He deems best. Lovingly, its part of pain and pleasure, bringing joy, peace, and rest.” I claim that today for you all. Love, Aunt Deenie