Hello all! It has been awhile since my last update. As the title of this post alludes, Emy has had a fairly stable couple of weeks. She had some blood pressure drops and needed to be on vasopressin and norepinephrine for a short time, which consequently stopped her breast milk feeds.
She made progress this week and is now off of her blood pressure medicine and off of her antibiotics. Her last dose of antibiotics was early in the morning on 4/15; so far she hasn’t shown any signs of a re-emerging infection. This is a big accomplishment for Emy since she has been on antibiotics for a long time.
They also re-started her feeds again a couple of days ago and she is tolerating them, which is also a big accomplishment. Her bowel perforation set her back and she hasn’t tolerated enteric feeds very well since her surgery. We’re hopeful that she will continue to tolerate the increase in feeds as that will help her grow in length (she is a bit chunky right now but hasn’t grown much linearly).
Yesterday and the day before, Emy gave us some beautiful smiles and was very interested in looking at her reflection in a mirror. While she is stable, we are making use of her wakeful times by engaging her senses. She has limited mobility while she is on CRRT, but we offer her activities she can tolerate. We give her different textures to hold and show her the books we read. She has also enjoyed staring at the rainbow light in her room (it is a setting on her overhead lights). We love interacting with her and are relieved to see her in a stable place.
Thank you for your continued prayers for Emy. Please pray that God continues to sustain her: that she grows in length, that she stays infection-free and that she continues to heal from her last bought of peritonitis/bowel perforation. Please pray for her to have no complications with the next PD catheter surgery, which will likely happen within the next month. Also please pray that we are able to work out the logistics of her discharge when the time comes.
Baby Menon 
Thank you for this update. Such a fun picture. It is wonderful to hear evidence of Emy’s developing brain and the different things that you do to encourage that growth. Emy is a blessing and blessed to be born into your family. Thinking about her growth brought to mind an explanation of my son and his junior high math comprehension. He was about 3 years ahead of the class in algebra concepts but could not grasp geometry at all. His teacher explained that it had to do with brain development. It just depended on which portion of the brain developed faster at that moment in time. Some kids were light years ahead in geometry but couldn’t get algebra. In 2-3 years all of the student would be on the same page as both portions of the brain would be balanced in their development. So when I think of Emy and her length and width, I remember my son in junior high math class. As always, continued prayers for Emy and family, may her healing come with the most ease, comfort and as rapid as God’s timing allows.
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Hi Deanna! Thank you so much for the continued prayers and encouragement. Thank you for the reminder that each child will develop in their own time and on their own schedule. We’ve been told to expect major development once she discharges from the hospital and once she has a kidney transplant. Her lack of kidneys and hospital environment are hindering her development, but we hope and pray that she will make up for these setbacks later in life. She also has 22q which will likely impact her development in some form. For now, we are helping her to develop as much as we are able with where she is at on her health journey.
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Hi Rebekah. Thank you for the progress notes on Miss Emy. Please touch her little arm and hand for me. I send you a hug. I pray for her health, her life’s journey, and your and Era’s comfort and strength (also for grandparents Lois and Michael). Esmeralda/Emy
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Thank you for the prayers and encouragement. I will give Emy a hand hug from Great Aunt Emy!
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