Joyanna is back in school. They resumed classes this past Monday, April 16. Joyanna was ready, I think. She went both Monday and Tuesday but of course always has Wednesday off. She has been pretty sleepy today for her infusion. It has gone well. Her doctor reminded me that she has known her now for a year and her assessment is that she hasn’t really seen a significant decline, except for the reaction at the beginning of the infusion process. I’ve said many times recently and in the past as well that I know I’m too close to her to even see any progress or regress. We take things a day at a time but we trust in the Lord’s ability to see the big picture. She has had a few good days over the past week. Especially last Wednesday she was really chatty, vocalizing all day. Her speech therapist was loving that because we got several intentional responses out of Joy. She also was intent on talking to Uncle Jason as he preached last Wednesday evening. Joyanna’s birthday is coming soon (April 30) and our girl will be 6. When I think of it like that, I realize how the infusion or her journey in general has allowed her to maintain much more than Philip. The fact that she can still see is amazing. The Lord knows exactly what he wants her to accomplish.
Ben’s mom was in for a week to visit a week and a half ago. We enjoyed some time with her, playing games and walking outside, just being with grandma. Ethan is even more excited to spend some time with her this summer when we head toward the northeast.
The Children’s Center dropped their flu precautions so Ethan went with me on Tuesday to see Philip. He got to go into the unit for the first time ever. We did an inch by inch walk-a-round of Philip’s room so we could cover all the things there. He’s such a curious boy so I figured if we just started by explaining almost everything then we could avoid unapproved excursions to explore. He did pretty good. There are several books on Philip’s shelves now so he was happy for me to read to him and Philip. I’m sure Philip enjoyed it too. We read 7 books. He wanted to sit right up on the bed beside him but that lasted for only 30 seconds. Philip is finally calm. Raising the three medicines was what needed to happen. It took a week or so to kick in but he has noticeably been calmer now. His heart rate is staying down which is key. Yesterday, he was still having some seizures and/or tremors but that heart rate was way down in the “chill” range. He did have one large seizure in the middle of the night last week two nights in a row but hasn’t had anymore since then. We stayed for about 2 hours yesterday which is so nice just because it’s easier to have Ethan with me. When we left, Ethan got to pick a sandwich and dessert treat from the cafeteria so he really liked that. Then, just outside Philip’s window is a little playground in a courtyard. Ethan REALLY wanted to play there. He played on all the equipment, developing ninja courses on everything. We made it home just before Joy came on the bus.
For those who live here locally and would like to take your kids with you when you visit Philip, they’ve asked that we still check with each unit to make sure there are no individual precautions in place before visiting. So just give me a call/text and I can let you know how to find that out before you visit.
Recently, when I’ve been able to tell people at church that we truly are doing okay because of the Lord’s grace, many have responded that they are still praying for us. Many times I was struck by the fact that that is probably the reason why we are doing okay. Of course, our Lord has sufficient grace no matter if anyone is praying or not. But with so many people praying, I know he is answering. Thank you! I just want you to know that your prayers are being answered by the Father.