Today will be Jeremy’s fourth trip to DC this week. On Tuesday he had to take a sample of Ryman’s stool to Georgetown to test for infection or viruses. Yesterday we had labs and her numbers had elevated more so we upped her Prograf and steroids. Talk about Roid Rage, this girl was evil last night. If we were at Georgetown yesterday I would have thought the exorcist demon had found a new host in our little girl. She was so unhappy, tired but fighting sleep so hard. We are headed back in to check labs again today. If her numbers are still elevated she will be admitted to start the big dog IV steroids. One of the stool test came back positive for an infection yesterday so the team is starting her on antibiotics today. We should get the viral test back today. Praying that the numbers are lower today.
After talks with the team at Children’s, even Albert said that he wouldn’t be able to get blood from Rye for very much longer. Her veins are in bad shape from all the surgeries and lines she has had. Plus they are deep and they roll. So we are pretty sure she will be getting a PICC line or a Broviac on Monday. This is not our favorite thing but it will be nice to go to labs and not have to hold get while she gets stuck. It will be much easier and I am sure we will quickly adjust to having it. I opened up my Jesus Calling App (seriously can’t thank Marcia Ramirez enough for this gift) and was reminded that living for today and not trying to take this on alone is so important.
Trust Me enough to let things happen without striving to predict or control them. Relax, and refresh yourself in the Light of My everlasting Love. My Love-Light never dims, yet you are often unaware of My radiant Presence. When you project yourself into the future, rehearsing what you will do or say, you are seeking to be self-sufficient: to be adequate without My help. This is a subtle sin—so common that it usually slips by unnoticed.
The alternative is to live fully in the present, depending on Me each moment. Rather than fearing your inadequacy, rejoice in My abundant supply. Train your mind to seek My help continually, even when you feel competent to handle something by yourself. Don’t divide your life into things you can do by yourself and things that require My help. Instead, learn to rely on Me in every situation. This discipline will enable you to enjoy life more and to face each day confidently.
Love you guys and are so grateful that each day we have so many people doing just this for us and Ryman.
Also, big news! We started cereal and Rye has not been a fan but we are so blessed to be able to do this without any worries of her getting too much protein and having high ammonia levels! Amazing!