Joyanna is continuing to do well--always wanting to move, lift her head, wiggle her body, kick her legs, etc. She hasn’t really gotten more words out or been eating much more, though she did have some ice cream last week and pizza two different times. She ate more ice cream than pizza, but I think she enjoyed them both. We're getting more smiles and general alertness it seems like, but probably less eyesight. Also, we'll see her neurologist at the beginning of February and talk about decreasing seizure medications again since we really haven't seen seizures anymore.
Because both Philip and Joyanna will see the neurologist that day, we are transporting Philip from the Children's Center (TCC). We are trying to minimize the number of times he needs transported, so they have worked with us to make several appointments for him that day. Joyanna has some labs and other appointments on that day too. Please pray for strength and energy for both Philip and Joyanna for February 8. We will literally be at the hospital or clinics most of the work day. It's an odd thought to get all the equipment to have Philip for a day. Things we never even thought about before, we are working with the family rep to request because we don't have them readily available anymore, since Joyanna needs so much less equipment.
Philip has had another bout with pneumonia, this time on the right side. Regardless of this, he is still calm and comfortable. A new seizure trend is emerging with a long seizure in the middle of the night that has happened three times now. A raise in seizure medicine may be happening for him. He has finally been put on the full dosing of tetrabenazine and this seems to have really helped him. It may possibly be the reason he is so calm and comfortable. My parents were able to come in this weekend for a short visit and were able to go with me to see Philip in his new place. Three of the four times I have been to see him most recently, he has been fully awake but lying still with his heart rate at a great resting rate; that's so encouraging to me. We know the direction he is going, and there may be no way to avoid the pneumonia now, but if he's comfortable then I feel everything is okay. There is nothing now to hope for but the final healing he will receive in heaven. We know when the Lord's time is right, he will go and we honestly long for that for him. There is nothing better for him here.
We've started to look at pictures of Philip's lifetime to prepare for a video for his funeral; it has been hard. I knew when the time came, there would be much grief to process through. But we have broken it up and done only about one year of pictures at a time. We have made it through his 3rd year but that was the hardest. That was when Philip was at the peak of his little life. That was the Philip we knew so well, though we've loved our boy through every stage. After finishing all the videos of spinning, laughing, talking, playing, we sat and cried and grieved the loss we feel so distinctly, but God has allowed us not to dwell there. We have moved in and out of that realm but have known true joy and peace with the rest of the days. This can only be by God's grace. Thank You, Father!
Now that Philip is safely settled in TCC and calm there (and since Joy is having stronger days) I do feel like we're enjoying a season of partly sunny. I said as much to one of the doctors today and she called it ebb and flow. Yes, that's our life--ebb and flow. She made the greatest statement though. Some have said that the same exact wave feels so much less destructive when you've moved out into the water a ways. There on the shore they're crashing and are keenly felt but the same wave a little farther out isn't felt so distinctly. I think that's a perfect way to describe it. We've moved out into the waters and there the Lord is absorbing the shock waves of our situation. Sometimes I feel we have such a different frame of reference but it is all part of the grace of God that allows us to stay afloat in this journey.
Thanks for praying for us!