We moved Philip into the Children’s Center in Bethany, OK today. It is only about 10 minutes from our house and it is a great blessing to be that close. We got there about 10am and spent the next couple of hours doing some paperwork, meeting with the doctor in charge, and interacting with the nurse who would be taking care of Philip today. The process was pretty simple and they walked us through it each step of the way. The doctor that will be overseeing Philip’s care, for at least the next week or so, is a Christian doctor that used to attend Southwest Baptist Church and we have known him as an acquaintance for quite a while. He is very involved there at the Children’s Center and we are very confident in his ability to care for Philip and make decisions for Philip’s care during this transitional time.
At 1 this afternoon we met with a group of therapists and individuals who will be working with Philip in the months ahead—basically letting them know where Philip is at, and coming up with a plan for Philip moving forward. The rest of the afternoon was pretty uneventful overall; getting Philip a bath, working with the nurse through logistics of Philip’s medication and feeding schedule, and really just helping the nurse to understand Philip.
I came home for a bit this afternoon to pick up a couple things and took Ethan up to see where Philip was going to be living. He knows that Philip is going to be living at the Children’s Center so that the doctors and nurses can help him, but I don’t think he really understands yet that this is long-term. Because of flu precautions they don’t allow kids under 12 to go back to the rooms, but we were able to stand in the hallway looking into the area that Philip is staying. Outside Philip’s window is a play area that Ethan got to play in, and he was able to peek in the window of Philip’s room from outside.
There are quite a number of Philip’s current doctors that he will be able to see while at the Children’s Center and that makes the transition pretty easy without having to change most of his doctors, but there are also some other individuals that work at the Children’s Center that we know even outside of the medical realm. A college student and a member at Southwest Baptist both work there as support staff (one of them has already stopped by to see Philip a couple times today), and a lady came up to us in the cafeteria this afternoon and introduced herself. We didn’t know her, but she knew of us (her daughter goes to Southwest Baptist Church). God has used all of these interactions to make us even more comfortable with this being the place for Philip to live moving forward.
Currently Becca is back up there for a couple hours helping the nurse this evening to know Philip’s nighttime routine. The nurse today was very open to learning from us how we cared for Philip even down to some of the small things. In many ways this has to do with their desire to keep us involved in his care. We are thankful for the help that they will be to us in caring for Philip, and for their willingness to allow us to stay involved.
With all of the above said, the day went pretty smoothly logistically. However, even though we are completely confident that this is the next step for Philip, it doesn’t mean that there is not a significant level of sadness at all of the “lasts” over the past few days and today. Sunday was his last time at church, Sunday night was the last time I would ever get him ready for bed, last night was the last time Becca would get him ready for bed, today was the last time he would be at our house or that I would carry him to the van, and the list could go on….
At the same time as the sadness about all the “lasts” for him and our family, he is also getting a lot of “firsts” this week at the Children’s Center. There is a strange mixture of sadness and peace through the whole process that is hard to explain or process.
Below is a picture of his new room, though we have moved a few more decorations in now and added a mini Christmas tree, etc.
Joyanna’s infusion is another story that has been going on today. The actual process of the infusion has been approved, but the holdup now is the insurance wanting to use an in-network pharmacy to provide the actual medication to be infused. Currently there is no in-network pharmacy nearby that is able to handle the medication (but there is one in IL they are thinking of using to try to stay in-network; figure that one out!). They are still working through the process, but as it stands now, they will try to get the rest of the details worked out tomorrow and do the infusion on Thursday.
We are thankful for those of you who have prayed and are praying for our family today and in the days ahead. Only God knows how difficult this time would be without the family and friends that love us and care for us. In the midst of difficult circumstances, God has placed us right where we need to be,--in the church we need to be in for support, with the family around us to help, and with the friends He has given us to pray. It is almost as if God cares for us individually as if we were His only children!