Philip seems to be bouncing back very well. Praise the Lord! In fact, I'm pretty sure I wouldn't be responding so well had I had surgery less than 48 hours ago. My sister-in-law took this picture last night.
Philip slept very well last night. He has been happy most of the morning but content to be still and quiet. His doctor just stopped by and is pleased with his status so she will put in the orders for him to go home. We should be starting to go that way within the next few hours. Processing time is a big guessing game! We'll be home by tonight though. They didn't come to take Philip to surgery until after 5 pm. The surgery went well. The doctor said he should be able to go home tomorrow if he's doing fine. Thanks for praying. Pray for good rest for us all and quick healing for Philip. I attended a ladies meeting at church yesterday evening and when I got home, Philip was already in bed. Once I got into bed, Philip kept crying every 20 minutes or so and the cry seemed different. I kept checking on him and trying to get him settled in and comfortable. Finally, when I checked on him around 11:15, I noticed the area around his shunt was swollen again. It was just like it was in August when the tubing in his valve broke. Ben and I began to make plans for another ER visit. We knew most likely nothing would be done last night so Ben decided he would go and I would stay at home with the little ones until this morning. Philip's CT scan and x-Ray were almost identical to his former ones in August when this happened. It was really odd then that the tubing broke so it is absolutely perplexing that it would happen again. He'll have surgery today to replace the tubing. The neurosurgeon has been by and she has a couple more surgeries before she fits him in. It will be a few hours still. The good thing is that Tuesday is his normal fasting day so fasting for surgery has not been as hard for him. Please pray the surgery goes as smoothly as last time and that she can help the tubing to be stabilized so it's not likely to happen again. Yes, that's true! No bad news to report. We've just clicked the days by one by one for the last two weeks. Some have been busy, some have not. Our church did have our missions conference March 4-8. Ben and I were not able to make all the services because of responsibilities and a sick Ethan but what we did get to experience was very good. The Lord always uses Missions Conference to revive my heart and soul for serving the Lord, in whatever way. This year he reminded me to be surrendered completely to what he has called me to now, wife and mommy to 3 precious children and whatever the future holds. One thing I continually have to come back to is if God allows Philip to stay as he is for the rest of his life and mine even, I need to be completely surrendered to care for him, trusting God to give grace as life goes along. It's so like our human side to say, "This is too hard. I don't want to do it forever." It's easy also for me to beat myself up for thinking those things. In the last few months, the Lord has helped me to process those thoughts and move on with life. When I take the time to ask for His help, He always gives it and I realize His grace will always be there.
Philip's EEG reading was possibly better than last January's. It's so hard to tell with him because he has so many abnormalities in the EEG anyway. He's continued his almost predictable cycle of ups and downs. He'll have 2-3 good days and then 2-3 bad days right after, then that cycle over and over again. That seems to be how he's moving through life. Once again, I tend to travel up and down with him somewhat. I can get really discouraged on a bad day; he struggles to do everything, doesn't speak any words, has trouble sitting up and eating and is just out of it. Then on good days, he will say words and laugh, he eats better and plays, moving around on the floor even. Imagine living on a rollercoaster every day! That's why I pray and ask the Lord to help me stabilize my thoughts and emotions. He's been on spring break this past week and it will continue through this next week. He has done much better at home each day than I thought. I thought he would be really grumpy about not going to school but he's been fine. He has completed his fasting this week well and seemed to benefit from both Tuesday and Friday. At his therapy on Wednesday, I fed him a snack while his speech therapist listened to his swallowing. For the first time in a very long time, she could hear no gurgle, no wetness lingering. Everything sounded dry and functional. She was very excited and so was I. Praise the Lord! His OT, Mrs Laura, usually always gets him laughing and it was good to watch him enjoy his "exercises" with her. I'll try to post the video I took of him in the ball pit at therapy. Monday night, I was able to attend an epilepsy support group and reconnected with the Brewsters. Their little guy has atonic seizures and they are planning to try the ketogenic diet. I am praying for them since we have had great success eliminating Philip's atonic seizures with the diet. Since atonic seizures are the only ones their son is having, I hope the diet will work to control them. Please pray for him too. We are trying to get some ketogenic support things started since the base of people here in Oklahoma is growing and it helps so much to talk with someone who understands. Please pray we can maintain better days longer than 2-3 in a row. Pray Philip can finish transitioning through time change. Pray for progress no matter how small. |
Philip & Joyanna's Story
December 17, 2009 -
August 25, 2018 Philip's memorial slideshow and funeral service can be viewed by clicking on the "Philip" tab at the top of this page. You can read more about Joyanna's story by clicking on the "Joyanna" tab at the top of this page.
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March 2024
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