The feeding process is very simple and I am almost into a routine of administering feedings. We are still working out how to vary amounts at each feeding to make sure he gets all his needed calories daily but that will happen soon, probably by tomorrow. Already I have had time to play with Philip and sing to him outside of feeding times. That is such a blessing! He was laughing and smiling at lunch today. Yesterday and today I have fed him a little by mouth as I give him a feeding through the tube. He has a few blueberries, sliced olives, or grapes cut up. I tell him while feeding him that it's miracle food, because he only has to eat 8 blueberries and amazingly, his stomach feels full! :) He doesn't really get what I'm saying, but we have a good time talking about it and he just enjoys feeling full.
Ben and I have concluded as of last week that he is mostly blind. Once in a while, he'll grab for one of our phones if we hold it in front of his face but that means to us he may have a little light sensitivity at good times. He responds to sound and touch. It wasn't an easy time last week when I realized this for the first time but once again, God has helped us to move along down this road with His help. We knew the day was coming, but it still takes some processing time each time. God is good to be present with us. That said, Philip doesn't really know that he has the tube. He hasn't seen it and although he has touched it a few times, he doesn't register it is part of him now. Cognitively, he is not at the place to even understand that if we told him. On the other hand, Joyanna and Ethan noticed right away when they saw me giving one of the feedings yesterday. Try explaining that to little ones. We said, "This is how Philip eats now." Joyanna just watched and watched. She knows he eats in his belly. That's what she says to us anyway when she sees it again. They've already moved on. It's just the way things are for them. It makes me actually glad that in the future these things won't be uncomfortable to them, especially Ethan. He'll never be uncomfortable or feel awkward around people who have special needs.
Joyanna is still doing okay. We have not had anymore big seizures. It's been three weeks now. I still see smaller ones and she is having trouble with some motor function. I have watched her over the last week sometimes fall down our three short steps into the family room. They are carpeted and fairly shallow so I have not intervened, knowing this is part of the journey. The falls are not caused by seizures just lack of depth perception or muscle coordination. Today, I watched her sit down and scoot down them so she is adjusting on her own without my input. She doesn't always do that and she doesn't fall every time but it shows that she is compensating for whatever is changing. We are in sort of a weird place with her. While some things may be slightly going backward, several things are still going forward. She is talking and singing more. She is understanding abstract concepts. She is pretending more. She knows she is having small seizures because I tell her when I see her have one but she doesn't seem to comprehend it fully. Anyway, she will show us the path as she walks it and as the Lord maps it out for her. We have started her on a B6 supplement because it has been shown to balance out the seizure medication she is currently taking. It generally helps with negative behavioral side effects.
For all three of my children, my daily prayer is to put them in the Lord's hand and trust His care of them (whether through me, others, or Himself) is the best option for their lives.
Please pray that Joyanna stays as seizure free as possible and her behavioral side effects disappear. Pray all of Philip's peripheral issues due to dehydration, etc will take care of themselves now that he is getting all the nutrition and hydration he needs. Pray for God's grace for each of us as we have need. Thank you!