Today has been another rough day for Philip. Weening off some of his meds is almost cruel it seems. He and I just spent some time talking about what night meds for him to take to try to give him some pain relief for tonight. I understand why he needs to ween off the meds but it is just hard on him and very painful. We are always watching close for seizures since some of his meds are related to that. We need to really NOT get those started where we can not control them
One more issue..Philip fell the other day and cut his foot . It is in a bad place and slow to heal. Please say a prayer that it can start to heal and we do not need to have anything done with it. Any type of infection is harder for Philip to fight right now.
We are doing the work up for Philip's first stage of his operation. There are two important things that HAVE to be done before we can get it done. He has to have medical clearance. Not the easiest thing but we will get it. And he has to have a psych consult due to hos extreme this operation is. I am working on getting that done also. Alot to get done..not a lot of time. But we will get it done. Whatever it takes.
This was posted on Philip's CB site last night and I know some of you do not read there. So many of you pray and carry Philip in your thoughts daily...I wanted to just share these quick thoughts from From Wed.
We are looking at the first stage of the operation in a matter of days..maybe..
Today was heartbreaking for me ..Philip never really complains about too much or talks about the 'what if's. But today he told me he was worried about his future. He talked , I listened and inside my heart broke. What do you do when you can not pick them up and rock them? So instead I said..well you know I will do whatever it takes to make sure you are okay and take care of you ALWAYS.
I wish I knew what that was. Until then I will pray and hold on to the faith that GOD has always held Philip in the palm of his hand and taken care of him.
We are so blessed.