From Jaundice to Spinal Taps

Thank you for your consistent prayer! We continue to feel held in the arms of many friends and family. First, we are so blessed to have family available to assist in any way need. My mom was able to drive with me for James' appointment at MDA today while Joy's mom was able to stay at home with Joy to assist in the phototherapy for Adrianne's jaundice. Moms are so great! James had a lumbar puncture (LP) today to have chemotherapy injected into his cerebral spinal fluid (CSF). This will continue throughout treatment, and at this phase, it will occur one time per week. James also had his port (small rubber ring embedded in his chest connected to a catheter) accessed for the first time today. While he put up a small fight, the process went really well and his port was successfully accessed! This will hopefully improve with each access in the future. The MDA staff is amazing. Each of the six people that we have a relationship with asked about baby Adrianne, Joy, and wanted to see pictures. We are lucky to have such caring professionals that take a personal interest in our lives.

James responded beautifully to the LP. He is given anesthesia (Propofol) for this procedure. He falls asleep quickly and wakes with little to no agitation. After going to the pharmacy, we were able to leave MDA in record time around 12:30 p.m. (which made it a 6-hour day instead of an 8-hour day!). Adrianne's day was full of the "tanning bed." She already has little tan lines around her diaper. Kidding! You ought to see the device she has to lay in. It's the size of a large suitcase and sits propped open with UV lights beaming down on Adrianne. Adrianne is also wrapped in a UV blanket to give her extra assistance to break down the excess bilirubin. Praise God, her bilirubin counts decreased with the latest blood draw (just three hours ago). We will continue the all-night UV vigil (thank you Nana) to get those counts where they are supposed to be.

We are daily reminded that God is watching over us, helping us through hard times, and sharing his love through you. Current prayer requests include:

1. Praise! James' LP was successful and his blood counts have remained stable.
2. Praise! Adrianne's bilirubin counts are dropping closer to the normal range.
3. Praise! Joy and Adrianne are healthy and doing well after birth.
4. Adrianne gets the maximum amount of exposure to the UV light through our meeting with the pediatrician tomorrow.
5. James continues to maintain "normal" blood levels and has minimal side effects from the chemotherapy.
6. Nana, Joy, and I are able to feel rested (even when we don't get enough).
7. James will have increased tolerance to the frequent barrage of oral medications.