Madison had the best clinic visit in a LONG TIME! Her levels all looked pretty normal and we don't have to return to clinic until Monday! Merry Christmas to Madison! The best gift ever! Dr. Bhalta said we will discuss the "go home date" next week!!!! In addition, Dr.B informed me Miss Madison is just like her mommy; loves people and likes to set the pace! ❤️ 2015 will be a year we remember! One perk of 2015 is the friendship we made with Katie and Fallon! Doctor Katie is my go-to for almost everything❤️ We love you Schlautman Girls more than you'll ever know! Merry Christmas and here is to a healthy 2016❤️ Kayley is off of life support and awake!!!!! Welcome to the viewing of another miracle! God is good and we give him credit for this little baby!!!! Please continue to pray!
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Yesterday, all my family was together to celebrate the marriage of my cousin (Brevan to Kelli). It was so hard being so close and not being able to go. My girls were suppose to be in his wedding, but due to our circumstance couldn't. The hardest part of this season is not being with our family. No weddings, birthdays, Thanksgiving, and now Christmas.... We usually don't express how much we miss everyone because A) They already know B) Nothing can change our circumstance C) makes all parties involved cry.... Well, even though I know they know A., B., and C., I don't care. We miss them! We miss the crazy, we miss the laughs, and we miss the continuous laughter!
One thing we have learned is to appreciate and embrace our family! We may not ever understand everyone or event, but we know that life without family isn't near as fun! We have learned to be thankful for the small things for those are the things that make us who we are! Ryan and I are thankful we are able to be with our kids this Christmas, but do miss all of our extended family. We love you Keppler, Carruthers, Muma, and Lash Family!! Merry Christmas!!! One hour early, but God is speaking and I'm posting. We all had or will have the days in which our lives have changed... Some are full of joy while others are filled with sadness. In both circumstances after the day is over we are forever changed. Before bed, most nights Ryan has been listening to music to fall asleep and this is one song he plays often.... I find complete joy and peace at the end of this year. Romans 5:8 But God demonstrates his own love for us in this: While we were still sinners, Christ died for us. God, may you continue to move in and around me all the days of my life. Dear God,
I lift up to you Kayley. You know every detail of her little body and I ask you guide the surgeons hands and their hearts. God you can heal Kayley and we know your plan is far greater than ours. I ask you wrap your arms around Melissa and Reece. Let them feel your presence and let them know you are in control. God use Reece and Melissa to further your kingdom, Lord. Let their love for you shine brighter than any fear they may have! Dear God your plan is well with our souls! Amen. I called Melissa (cousin and Kayley's mom) this evening on my way back to St. Louis. My heart has been with her, Reece, and Kayley the last few days. It is so difficult to see your baby sick and knowing that they now are going through that brings me to tears.
Several have thought Melissa was a mom I met on this journey in reality she is my cousin. Our dads are brothers. This morning, when I ran into Grandma's on her table set a picture of Madison and Kayley. So much has happened in our family this year and God continues to shine his love, grace, and strength upon us. Melissa and I spoke about several things, but one thing I shared was the importance of tithing. God will ask you to give to certain families or places and it is important to listen. God has time and time again shown us that by being obedient he will meet all of our needs. The day was spent deep cleaning our house so we can be home in January! A special thank you to Cynthia and Debbie who helped me! Still have the addition to clean, but every other corner is disinfected:) No bragging today it took 8 hours! Thank you Rodney for touching up the paint! House isn't done, but Ryan can't work much later in the evenings. Thankful for all the "elves" that showed up to help Ryan this week! With Christmas days away we are viewing Christmas different this year... No words to explain just many emotions. Sending love and prayers to all of you! May good health and love find you this Christmas. Madison and I spent the entire day in clinic... It wasn't too bad because our bone marrow transplant friends were there too❤️ Declan had his first clinic visit from being discharged from the unit today and Gabriel celebrated day +100!!!! Madison had her g-button changed today.... This occurs once a month. The surgeon watched/guided me in the changing of it today.... Of course, although I was told nothing would come out of the hole while changing it, it did! Formula got all over my shirt and Madison... (Gushed out). Thank goodness Ryan skipped out on the fun today or he would have thrown up. Another one of those days I walk to my car shaking my head saying, "God, I can't believe you trust me this much." Madison's kidney numbers are still not good, she lost weight from Monday, and the HHV6 showed up in her blood in the test they did on Monday.....They did more blood test today to make sure it really is positive. Madison has only had this virus in her gut. Please pray for Madison she doesn't need any more excitement! This is what the g-button looks like when not in her stomach. I had to run into Sam's club this afternoon for diapers and on my way out the bell ringer looked at me and said, "Sweety, nothing will be like 2015!" I smiled and replied, "Your right." What is one word that you would use to describe 2015 for you and your family? The one word I would use for our family would be humbling. Please share your word.
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