You may start to notice a trend in long time frames between posts. I have. Just so you know, we've usually hit a new phase in the downward progress in Philip's journey. At least that's what I've begun to notice. It takes me a little while to process these new phases and I just don't feel like posting. I'm being very transparent, I know. It's probably my inner safeguard to protect emotions. That said, if you don't see a post for a long time you can know to pray for us in a special way because it's probably a harder time.
I probably can't catch you up on everything since August 27 so I'll just hit the main points.
Philip has added a new seizure medication and is now leveled out after the initial week of irritability. His epileptologist wanted to try this medicine because it addresses the tremor and the seizure increase. It seems to have taken care of most of what she thought it would. With that, we have lost a little bit of interactivity and function. He cannot sit up alone anymore. He has not said any words since the surgery although he's tried several times. We weren't sure if we would see any more smiles but we have. He's even laughed a few times. We thank the Lord for this as long as we can have it. Mostly he is very quiet and content but at the same time more out of it. That's what I have been processing this time. I knew right after the surgery when we saw the seizures and tremor increase that we would need to increase medication and switch our decision to comfort instead of function. I am thankful for the little bit of interactivity the Lord has allowed us to have. Philip still gives me hugs and I can't quite explain but he still indicates he loves me and I know what he means. He doesn't say those words but I know he's telling me he loves me. It's hard to put into words even here. Maybe another mom to a non-verbal special needs kid would understand. They can speak without speaking. At least I understand his language.
He had a swallow study on Thursday and the results are as we thought. He can swallow thick substances--apple sauce, yogurt--but thin liquids are more difficult. They move so quickly down his throat he can't respond in time to control them. We haven't been doing much feeding by mouth since the surgery just because the tremor came back so it's not a huge change. I feed him a little applesauce each day and we use an oral sponge to let him moisten his mouth. That has been working well. We are thankful he can get all the nutrition his body needs now via the feeding tube.
Joyanna is doing well. Still no big seizures. The behavioral problems sort of fluctuate from day to day. That's pretty close to any 3-year-old so we just deal with those as they arise. We discovered last week she knows the pledge of allegiance and today she sang along with half of the books of the New Testament in the car. She is definitely a JOY in our lives!
The Lord just made it possible to do a little rearranging at the house. Philip needed to be in a room by himself. For a while, his bed has been in our family room but it was just not working well for a long term situation. We changed our family room into the master bedroom and moved Philip into our room. I think this will be a nice workable solution for everyone's well being.
We are still overwhelmed at the amount of support coming from all directions. God's people are soooo good at taking care of their own in a hard situation. We know that's because God Himself controls and directs them. We are so thankful for all the people sensitive to His leading. Your help, encouragement, prayers and gifts come at just the right time.
Pray for God's grace and strength daily in our lives. Pray that allergies (Yay, Oklahoma!) don't complicate medical issues for Philip or any of us for that matter. Pray that we would have wisdom to deal with the behavioral problems with Joyanna.