We are back home ~ from our annual Dr.'s appointment that takes us to Denver. Sophia was amazing on this journey from her ability to communicate and understand more of the world around her. She was brave to undergo the EEG which she calls, "owie" and points to her head several different places to show you where all the electrodes go. She prayed for Jesus to take "owie away". Our prayer as well, that Jesus would heal her. She fought sleep this time, which is progress for Phia living with WHS. Her emotions have developed this year. YAH! She is able to cry and fight sleep like a typical child would be able to do. Without any inhibitions we sang her songs and prayed, all with her directing and telling us what she needed. A sneek peek, for those watching, into her beautiful gift of compassion and empathy. She sang, "This little light of mine." I would love to change the words to, "This very BIG light of mine." She carries a torch inside her little body that reflects Jesus. People are stopped in their tracks when they meet her and can see her brightness, pretty magnificant. His way, along this journey, of keeping this Momma and Daddy seeing Him, too.
The following day the news of the EEG was discussed with us. Sophia had changed significantly from her last EEG, (two years ago.) My heart started to race. Bracing myself for the news that will change our lives, once again. Remembering the Psalm I had just read the night before, "He will have no fear of bad news; his heart is steadfast, trusting in the Lord." The Dr reports.... No epileptiform activity was recorded. She had no spikes of seizure activity ~ at all. A clear EEG....really, are you sure, check again. Then came the news that she could taper off her seizure medication. A turn on the road that came so unexpectedly. When you don't expect good news it really becomes even greater news! This was completely refreshing . We thought maybe a med change but to be rid of them altogether? Amazing. The report from her appointments remained outstanding. Good news after great news. Choking up, as I write, on the goodness God has provided this little girl. He has held her when I couldn't and still is, thankful. He is her Sustainer.
The next 10 weeks we will taper Phia off the medicine and homeschool her during this transition. Please pray for her and for us to put our fears to rest. It is as uncertain to how she will do, (coming off the medication) as it was for her to go on the medication. We are taking each day as it comes and trusting in His care. I'm thankful for God to unmask my deep dark fears and free me from them. So here we are, another corner to turn. May it sink down in my heart to focus on Him as we start around the bend. Trusting in a good God, always. He gave me these verses the week before we started down the road to Denver. "Do not fear, O Zion; do not let your hands hang limp. The Lord your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing." Zephaniah 3: 16-17. May I not let my hands hang limp, may I relinquish to Him ~ everything. And when I forget and get tired, will you please help me....... reminding me and then, with one on one side and one on the other, hold each hand and help me keep them lifted up to God, ( just like Aaron and Hur did for Moses when they fought the Amalekites)..........please! I can't do this without you. I also loved that Aaron and Hur provided a rock for him to sit on.
