The really good news is that, though it is 6 months since Joy’s last infusion, we have still seen no negative changes in her daily life. There is no increase in seizures and she still has cognitive recognition of us and her favorite things. Everything that she was able to do 6 months ago, she can still do: vocalizing, smiling, and laughing. We are surprised by the steadiness she has had but we are grateful. We are thanking God for every day that we can see her smile and laugh. She is enjoying her classes and activities at BCHC so much. There are so many special people that love her and make her days happy. She started “summer camp” days yesterday at the hospital and a patient rep sent pictures of her enjoying herself.
Joyanna turned 10 on April 30 and we were able to have a family birthday party outdoors at BCHC. It was a great time. We are just so amazed that God would give us 10 years with Joy, and she is still able to interact with us. Her journey has been so different from Philip’s but we are thankful for both.
Thanks for your prayers for our family, especially as some of you didn’t know what was going on for a few months.