Day 87 from the clouds

My phone is currently on airplane mode because Ryman and I are high in the sky. Clouds all around us, feeling even closer to God. I just opened my Jesus Calling App to read today’s devotional.
I Am Nearer – how fitting.
“I am nearer than you think, richly present in all your moments. You are connected to Me by Love-bonds that nothing can sever. However, you may sometimes feel alone, because your union with Me is invisible. Ask Me to open your eyes, so that you can find Me everywhere. The more aware you are of My Presence, the safer you feel. This is not some sort of escape from reality; it is tuning in to ultimate reality. I am far more Real than the world you can see, hear, and touch. Faith is the confirmation of things we do not see and the conviction of their reality, perceiving as real fact what is not revealed to the senses.”
As we pulled away in the ambulance I saw Jeremy wipe a tear and gave me a ‘whew’ look. I know this is so hard for him to not be with us right now.
I rode in my first ambulance and small plane today. Wore some funky headset and got to listen to all the pilots and air traffic control. I am so amazed by the guys on the plane with us, they took Ryman last time she went to DC. It is amazing that their job is to help those in medical crisis.
-My ears are starting to pop, not sure how Ryman is sleeping through this. Her ammonia was 100 right before we left. She still hasn’t had any protein since last night. They will start to give her some once we get to Children’s National. Lets hope she does exactly what she did last time she made this flight. Get there and have a completely normal ammonia level. This flight was so important. If her numbers were not lower this morning we would have had no choice but to start dialysis and then we would have been stuck in Nashville, which is not close enough to the transplant hospital. So now the plan is to be at Children’s National until transplant at Georgetown. If her numbers level out we may be able to try to wait for a deceased donor liver. If not then Jeremy may be able to give Ryman part of his liver. We will find out if he is an option next week hopefully. If he is not we may start to explore family and friend living donors. I have already had several volunteer, we have the best friends. You would have to be O, O+ or O-. 18-55 years old. But we will not look at that until we know if Jeremy isn’t a match.
-Right now I am wishing I would have worn tennis shoes with socks, my feet are freezing up here. The temp outside the plane is -4 degrees and we are going approximately 345 miles per hour at 21,700 feet right now. Making our descent, about 20 minutes from landing. Can’t wait to get Ryman there, she is doing great during this flight.
If you are reading this, we are back on the ground in DC. Making our way to Children’s National. I will do a late night update to let everyone know where we stand as of tonight. Love you all and thank you so much for your prayers and support! -Brandy
Just found out that Sawyer’s ammonia is 168 today. Prayers for these crazy urea cycle kiddos.
Ryman woke up for sec and I managed to get a picture.








8 thoughts on “Day 87 from the clouds

  1. Tears again…. I love Jesus Calling! The truth of His realness in our lives is in every day of that book! Thank you for taking time to share with us…. so many people are praying and wondering how things are going. Love you all….love the pictures of your beautiful little girl!

  2. Love you guys so much! Thankful you’re taking the time to keep us updated and so glad you’re safely there. When I read Jesus Calling this morning, it kind of took my breath away. How often do I miss how near He is, just because my eyes aren’t open? Prayers every minute, sweet friend!

  3. LOVED THE PHOTOS, SHE IS SUCH A BEAUTIFUL BABY! Just know that we have you all in our prayers and we are trusting in God ! We ask these things in the sweet name of Jesus, Amen!

  4. We had prayer for Ryman and the family last night. We are keeping faith that God will handle this situation, there is nothing too big or small for him. if it come down to it, I match the conditions for transplant ( blood type and age ) and would in a heart beat.

  5. HI! I work with Britt at Starbucks and just wanted to let you know I’m thinking about you guys all the time! I get updates from her about 5 days a week at 4:30am when we open together. I also meet the requirements for a donor (o+, 25 years old) and would do it at the drop of a hat. My best friends new baby has been having liver issues and thankfully was just diagnosed with Aligille Syndrome and hopefully will not require a transplant. I just wanted to let you know I know a little bit of what you’re going through and I am just one of many who are thinking and praying for you and little Ryman.

  6. How happy you arrived safe, Ryman has so many people praying for her, she is so blessed.I would glady be tested for my great niece. Her pictures look so much like Caden when he was younger, she is a little Angel. Thanks for the updates we love all 3 of you so much. If there is anything I can do from here just ask.Love us.

  7. All our love to you Sweety! We will pray extra prayers for Ry tonight. I think of her and You guys everyday and check in on you all and say another prayer. God is always there, as is our love.

  8. A friend of mine posted this website link on FB asking for prayers. I stayed up reading all your posts and check the website everyday. First of all your daughter is so beautiful and obviously very strong! Secondly, your family is an inspiration. Ryman & your family are in my prayers everyday now. I have a one year old and had a rough and scary start with her. But can’t even begin to imagine what y’all are going through and still staying so strong and positive. Please keep the updates coming. I have faith she will get her liver! A match will be found! Many people are rooting for her and don’t even know her. She is definitely a loved little girl!! Keep the positivity up and stay strong for that gorgeous baby girl!

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