Joyanna has consistently been having changes but nothing much different than what we have been experiencing for the last several weeks—not negative or not positive or it’s too soon to say. That said, I have noticed some TINY positive signs. She can still see. She seems to be giving some resistance to her head just flopping down, unlike the last couple of week where she has just been floppy. She has managed to chew the few times we have offered her favorite things. She is still smiling and laughing when you interact with her. The changes we are seeing would be the twitches/movement moving to different parts of her body. Interestingly enough, it seems to be moving literally from top to bottom. This week, she is experiencing the movement in her hands and arms. She’s had a few twitches through her torso and hip area. But yesterday, I could tell some of her leg movements were involuntary. It doesn’t seem like the facial tics and head twitching have resumed so maybe once we get to the bottom we’ll be done. That would be good rest for her. She is now completely maintaining her weight with the formula and all her body functions and vitals are operating normally. We still wait.
We did meet with her epileptologist last Friday. The meeting went well although she wasn’t able to give answers to many questions. She is going to contact the doctor with the pharmaceutical company to check on signs and symptoms, neurologically. She did allow us to decrease a seizure medication and the good news with that is that we noticed no negative effects from that change. HUGE answer to prayer! We will wait a few weeks and evaluate again. If she doesn’t need the seizure medication we don’t want her taking it. Please pray that continues in a positive direction.
Philip is having an okay week this week but last week was a hard one. We did try to raise his seizure medicine to help him control some tremors and small seizures. But unfortunately when we raised that, it caused the chorea to emerge again. He was miserable, unable to sleep and it affected everything. It was Elizabeth’s first full week. So, we say she received her initiation. As soon as we lowered that medication again, things began to level out. It took a few days for him to get back to his baseline but he did. But the original problem of tremors and seizures is still around. They have gotten a little bit worse this week. We are talking with the doctor about the best way to address them. She is still working on getting the new medicine but it won’t necessarily address the seizures. It is for involuntary movement and tremor. Please pray with us about a medicine to decrease the seizures and the new medicine to be approved to combat the tremor.
Since Joyanna has reached what we would call a baseline, her new baseline, we are working on getting into school. She really needs the therapy and loves the interaction. She went yesterday for 2/3 of the day. One of the teachers in the class had her belly laughing and we really like that for her. We just don’t want to do too much for her too soon. Please pray for us to have wisdom where that is concerned.
Sorry it took so long for me to post! We love you all and thank you for praying even though you didn’t have specifics. May the Lord truly bless you for interceding on our behalf.