We apologize that so much time has passed since we last gave an update.
It has been a bumpy start, but Charlotte has adapted to her seizure medication, and she is doing much better now. She still experiences seizures from time to time, but thankfully they aren’t as severe as they were before. Through trial and error and wisdom from God, we have figured out a new routine to keep Charlotte safe and happy. We must be very careful now as it feels like practically anything can trigger seizures for her. From cold water to car rides, from loud noises to repositioning her too quickly can all start seizures. Thankfully we have medicine which can help stop them almost immediately. Her seizure medication has made her become quieter and more lethargic, and we miss hearing her little verbal noises but are thankful she is not uncomfortable or in danger.
We are sad to see Sophie continuing to decline mentally and physically. Bottle feeding has become more difficult for her, and the doctors are worried about her slow weight gain. Her brain is having trouble processing many things including how to hold her body, head, and limbs still, maintaining a sucking motion to drink her bottle in full, and uncontrolled episodes of crying or screaming. She struggles to stay asleep at night because her brain can’t process how to hold still. She tends to be exhausted throughout the day from lack of sleep, but we have discovered she finds comfort swinging in a baby swing for extended periods of time. This also helps give us a break from having to hold her all the time and accomplish our daily tasks. We have tried so many remedies to help her, but we know her brain is probably unable to process mentally what she can and cannot do.
Our prayer requests at the moment include wisdom when speaking to the doctors next month about having both girls—especially Sophie—receive surgery to install a g-tube for feeding and about possible medication to help Sophie relax and hold still. We would rather not have to see our girls rely on tube feeding, but also desire to make the best decisions that will ultimately help them and make their little lives easier.
Despite all of this, God has been so good to us. We always remind ourselves that our situation could be worse, but God makes a way to bear all things. He will never give us more than we can handle because He promises we can do all things through Christ. He gives us the joy we need to strengthen our hearts and bodies, and the hope of His mercies being new every morning.
“But I will sing of thy power; yea, I will sing aloud of thy mercy in the morning: for thou hast been my defense and refuge in the day of my trouble.” Psalm 59:16. Even when it is physically hard to rise in the morning this verse has encouraged us that we can still praise Him for His power and mercy because He alone is our strength and protection. He enables us to get up out of bed, continue living our everyday lives, and accomplish our daily tasks all while praising His goodness. God is always, only good.
Sharing these prayer request and praises from your August 2024 updates with the prayer warriors and faithful ladies at Thursday morning Bible study at Eastland Baptist Church in Orlando FL. What an example you set for the rest of us!
God Bless you both! Pam