Thank you for all your prayers. Here is another update regarding our girls.
Transitioning to five children has been a big step in our lives, but thankfully, David’s job allowed him several paid weeks off while we adjusted. Baby Elsie is a joyful addition and an answered prayer from God. She does *not* have Batten’s like her two sisters, and we are overjoyed to have a daughter to watch grow up walking, talking, and seeing life around her.
Charlotte and Sophie still struggle with some issues, although we’ve noticed Charlotte’s regression has plateaued. Her physical needs pretty much remain consistent daily, and we’ve had little need to worry about her. She’s in the 90th percentile for height and weight! The doctors are pleased that she still grows despite her brain dying. She continues to take her formula and water by bottle and has had no need for a g-tube yet. In a way, we sense that Charlotte has seemed happier and more sociable lately; she has even given us a few smirks and smiles.
Poor Sophie has more troubles than Charlotte. It’s interesting to see how the girls have the same disease but different symptoms. Sophie has epilepsy, a muscle movement disorder, and what seems to be frequent neurological pain. One might think she would pass away sooner than Charlotte based on her regression, but then again, only God knows the timing of everyone’s death. Unfortunately, Sophie lives in a perpetual state of discomfort or pain with only brief periods of peace. We are so thankful for the medications that grant some relief to her little body. One of her medications has allowed her to start sleeping longer stretches during the night. Constipation has also been a constant difficulty for her and adds to her distress. Thankfully, we have a nutritionist for Sophie on hand who has assisted us tremendously on this issue.
Despite the suffering we see, we still cling to the promises God has made. He is the God of Comfort, the God of Compassion, and the God of Mercy. We know life is a vapor–a short breath of air. Everything we know here on earth will vanish away, even pain. Our sights are set on reaching the ultimate Heavenly goal. Thank you; we truly are feeling the power of prayer from fellow Christians. God is granting enormous endurance and strength from above. Never have the promises of His Word shone so strongly for us as they do now. In Him we have strength for today, hope for tomorrow, and joy for the future. He is always, only good.
Prayer requests:
- Sophie needs relief from her pain and discomfort.
- Sophie needs to gain weight
- We need God’s wisdom to time the girls’ g-tube surgeries.
Praises:
- We are finally getting more sleep! It has been many, many months of sleepless nights with the girls.
- Elsie Noelle is healthy and well!
- David’s job generously gave so much time off when Elsie was born.