Update on Little Ms. Madison
Madison Health update:
Madison has kidney crystals (similar to stones in adults) this week has been very difficult for her (when she passes them she screams and holds you tight). She has been hooked up to 24 hour fluids to help the problem, but the lack of movement (in cast) doesn't help resulting in more crystals.
Madison had an EKG/ECHO yesterday morning and all looked good! Thank you God!
I noticed a rash under Madison's cast on her leg Monday. As each day passed it was getting a little worse. I showed the team the rash yesterday at clinic and they sent us to ortho to see it... Long story short cast is off and creams for the rash! Praying that slowly the crystals will let up as she is more mobile.
Madison's broviac line broke yesterday in clinic. (Yes, our day was one event after another). She will have the broviac line removed Monday morning and then her port will be accessed so I can administer meds and fluids. Please pray she doesn't get an infection since her line won't be removed till Monday. On a positive note, I'm so glad to see the broviac go! We've had so many problems with that line!
Please continue to pray for Nene (my mom) she spent Monday-Wednesday at Barnes with a twisted intestine. She is home and returned to work yesterday, but still exhausted.
Please pray for a loved one as they spend the day trying to figure out allergies.
Bring on the weekend.
MIA= Missing In Action to the world
I have found myself missing several things about the Bone Marrow Unit at Cardinal Glennon. Anyone who has been there will instantly think I'm insane! 88 days in one room with Madison with only one overnight trip home. Don't get me wrong there are several things I will never miss like being separated from Ryan, Harrison, and Mae so why would I miss that little corner of the world?
It is where I seen God heal my baby, it is where I could hear God so clearly, it is where God showed me who I was and who he needed me to be, it is where I seen love so deep that mountains did move, and hope got a new name in my heart.
Fast forward one year and the demands of this fast pace world are overwhelming, draining, and not what God wants for my life or yours. The last few days (after a rock bottom drive home from STL Monday night) I found myself asking why can't I have that peace when I'm at home? God replied, "You choose not too!" After little to no sleep at the beginning of the week God has started getting this ship back on course.
The truth is we weren't that far off course, but when you've experienced ultimate peace and God's divine plan anything out of that isn't good enough.
My mornings have been spent in prayer, devotion with God, sitting down with the kids for all three meals, and letting God guide our days. We have prayed, served, and just been the family God has called us to be.
Being a "Mom In Action" makes the world think I'm "Missing in the Action," but my husband and kids would say otherwise. It's okay to be a mom❤️ Being a mom is enough❤️
The moment when you look in your rearview mirror and have no clue where the last four years have gone!
Maebry Jane! When we found out we were having a girl I was scared to death! With three little brothers I had no clue how to raise a girl! Thankfully, Mae is strong, funny, and independent! She loves dresses, makeup, dirt, and rain boots! She keeps me on my toes and laughter in our home!
Maebry, I pray the next four years go slower and you continue to let your little light shine!
We will never get today again so make it count!
Mae's bday weekend!!!!
We have celebrated the last two nights with family! Mae is one loved little nugget! Her birthday isn't till Monday, but we have to celebrate for four days since she will be four!❤️🎂🍧
Mae currently is taking makeup appointments! Her specialty is bright purple❤️
Thank you God for today!
A year ago Madison and Fallon were in the transplant unit! So thankful to see the girls playing and just being kids today! Mae loves her Fallon!❤️❤️❤️ So thankful for the friendships we have made on this journey!
This week I've been asking God several times a day, "Where do we go from here?" I've been praying and spending much time just being still. We are at a crossroads with several different aspects of our lives and we are just waiting for God to lead the way.