Soaking it up...

Mae Update: 3-12-18 It is such a peculiar feeling to be in a good place but to feel worried that something is going to go wrong. Ryan and I are often asked how sweet Mae is doing and although things have been great for her lately, and we could not be more happy/excited, we are still nervous because it has been a long road to get to 'good' news. Recently, we were asked by one of our neighbors about Mae and, knowing everything that has happened, we gave him our positive news and he looked at us, smiled, took a deep breath, inhaled, and gave us some great advice, 'just soak it up!' Although simple, it is so true. Mae is doing so good, and has been doing so good, that we are really just trying to 'soak it up' while being cautiously guarded that things may not always go this smooth. We are so thankful for everyone who: asks how we are doing, says specific and intentional prayers, sends cards, makes meals, takes time out of their day to better ours, and who show genuine caring for our family. We could not be more fortunate to have such amazing support.

At church yesterday we were greeted after the service by people who were sitting behind us and know 'our story.' They said they could barely concentrate on what Pastor was saying because all they were focused on was how amazingly attentive Mae is to her brothers, Ryan, and I. How her smile is so infectious that it radiates throughout her entire body. How her bright blue eyes can literally light up a room and how her squeals and jabbering (during the sermon, nonetheless) are the best sounds that you could possibly imagine. There is so much good in this little girl that it is so easy to forget there is anything wrong. She is truly a precious miracle and a gift from God.

Mae has been making great strides in development the last couple of weeks. She is starting to sit up independently, albeit for 2-3 seconds, but we're making progress! She is eating meats regularly and doing quite well with her spoon and feeding, we have let her practice self-feeding and seems to enjoy trying. She is reaching farther for toys and is starting to put her arms out to be held by familiar faces. We are still patiently waiting to hear her first giggle and laugh and know that it will happen when it is meant to be. Most likely toward Will or Luke who adore her every movement and fall more in love with her each day.

On a medical note, Mae's appointment at U of M last week went very well. The CHIRP team is satisfied with her weight gain and her blood tests appear to be stable. Thank God! The best news is that her TPN cycle will be reduced calorically by 10% and also there will be a reduction in time from 12 hours to 10 hours! This is AMAZING as it will provide her body more time to recover and work without the corrosiveness of the TPN. (Again, we are thankful for the TPN, but, we will be SO thankful when we, hopefully, do not have to rely on it.) Starting this Thursday, when her delivery arrives, she will be hooked up from 8:00PM to 6:00AM. We are praying that she will be able to maintain and gain weight with the upcoming changes. She will continue her normal feeding schedule with her specialized formula and homemade meats. Prayers specifically for continued growth and development are very much appreciated and needed.

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God." Philippians 4:6