Yesterday was a pretty non-eventful day. We just had a day of counting calories and resting. Riley has been on IV fluids and she was on lipids all day yesterday and continues today. She is also on a steroid to help reduce swelling. I think the combination of all of these has made her look so good. She has gained over a pound since we have been here and it is easy to see how much fuller she looks. She just has a healthy glow about her since she is actually nourished and hydrated. She continues to be able to eat on her own and has not thrown up at all. This is probably due to the steroid which relieves pressure and swelling near the brainstem and causes a decrease in nausea and vomitting. Yahoo!
She was so happy yesterday. We went on a few wagon rides and she was visited by a physical therapist who blew bubbles and tossed a ball back and forth with her. Once she warmed up to him she was all smiles.
A friend of Jaron's came by and brought the girls a gift and also brought us lunch which was awesome. The last time I had eaten lunch was on Tuesday. You rock, Evan! Our dear friends, Bob and Glenda, and baby Ella of course, came for a short visit and brought us delicious chinese food for dinner and super yummy chocolate cupcakes. After that I headed home for a bit to spend time with Avery. I made her dinner and she then devoured a cupcake! She would have probably ate the entire box if I had let her. She helped me clean up a few things and then I gave her a bath and put her to bed. The few hours I was home made me feel a bit normal and gave me joy in being able to participate in the simple things with my beautiful Avery. She had been such a trooper and though she does not understand what is truly going on (she thinks Riley is sick and at the hospital for blood tests) she has been patient and loving every step of the way.
Today will be another low key day, but the prospect of tomorrow is starting to bring fear into my mind. I know she is being uplifted in prayer by literally thousands of people and I know she is in the arms of Jesus who will be laying right next to her during surgery and will never leave her side.
"Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us." Romans 5:1-5
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Morning friend! Just read your update and WOW! A whole pound and no vomitting???!!! Holy cow! What a FANTASTIC day! I am so happy to hear it! And I'm so happy you were able to get to be with Avery a while. What a blessing! I hope today is just as good and pray that our merciful God calms your heart of the fear that is building. Hugs to you all!
ReplyDeletelove, molly
I'm thankful for wonderful people near you to be blessing you with things like yummy chocolate cupcakes! Wish I could give you a big hug.
ReplyDeleteI read all of your updates to my mom, and I can't get through any of them without crying. We're praying soooooo much for Riley, you and Jaron. I'm glad you have this weekend to get refreshed so that you'll be ready for tomorrow. At our church this morning a young mom went forward with her little baby who just came through a very serious surgery and two weeks in the hospital. The baby was smiling and cooing and trying to eat the pastor's mic... it just made me feel comforted knowing that you'll be taking Riley up to the front of your church and sharing your miracle girl with the congregation too. Hang in there! God is hearing all of our prayers for Riley.
ReplyDeleteHow wonderful that she's gained weight! May God guide Riley's surgeon's hand tomorrow.
ReplyDeleteIt's great to hear that Riley has been doing so well eating and gaining weight. I'm glad that you have had some "down time" too. You are all in great hands. Big prayers being given for Riley :)
ReplyDeleteWhat I've been reading.. God is our REFUGE & STRENGTH, an ever present HELP in time of trouble. Therefore , we will not FEAR, tho' the earth give way, tho' the mountains fall into the sea. There is a river whose streams make glad the city of God, the holy place where the MOST HIGH dwells... The LORD ALMIGHTY is with us, the God of Jacob is our FORTRESS. Come and see the works of the Lord. Be still and know that I AM GOD. I WILL BE exalted." Ps 46
ReplyDeleteMy mom posted prayer request on her church email with Ps 139. "For you created my inmost being, you knit me in my mother's womb. I praise you because I am fearfully and wonderfully made." But it goes on." My frame was not hidden from you when I was in the secret place,your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be."
Dear Jenni & Jaron, live in that holy place (tabernacle) of the MOST HIGH GOD and in the REFUGE and FORTRESS which is God. God has the perfect number of days ordained for little Riley. He knows every atom of her body. God WILL BE exalted. HE is your HELP and STRENGTH. I love you all, dear ones, with all my heart. Mom