Philip smiled for me a couple of times yesterday. We are pretty quick to grab the phones and get some pictures these days. He had a coughing episode on Tuesday that scared me pretty badly. I was shaken for a while after that. He had coughed up a lot of phlegm and still seemed to be choking. I wasn’t sure if he had aspirated a lot of fluid or was just struggling with what was in his throat. Unfortunately, I had literally just taken apart his suction machine to wash it and so was trying to assemble it between holding him up and working with him to remove the fluids. He was upset by it and was crying which he doesn’t usually do anymore so that upset me more. I have to say I didn’t really handle it very calmly. I was scared. Please pray for me as these times will obviously happen more often now that I will handle them with calm and The Lord’s help. Ben arrived home from work in time to help me evaluate the situation and get it under control. I’m thankful for his calm presence. Nothing much ruffles him. The answer was easy enough to help change that experience. I had switched his primary allergy medicine, Zyrtec, to Allegra just that day. (We had been advised to alternate.) The production of phlegm and fluids had escalated so much in that one day that it precipitated that response. The next day I put him back on Zyrtec; it clearly works better for Philip. He has done much better again since then.
Philip had a dental appointment today and thankfully, everything is going well still. His two teeth in the front are coming in well. She said next we can look for the top front two to come out. He also will be getting 6-year molars within the next few months probably. Please pray that doesn’t cause him a lot of pain and agitation.
Joyanna is back at a place where she wants me to do everything with her all day. She gets upset if I cannot. We went through a time like this when she was two. I try to place times in the day when I can play with Joyanna and Ethan or read to all three, but she doesn’t understand it’s not realistic for all day. The thing she loves to do is look at books. I am sooooo thankful for this. We have lots of books because I love books. She can sit in her room by the bookshelf and pull them all off and look at them one by one. This is a resource we use daily. She can also watch videos with rapt attention but we try to limit this avenue. I have noticed that if she watches too many, she struggles even more in the following days with her attention span and behavior. I am not sure if there’s a direct correlation and I don’t do much internet reading on those subjects. There is every opinion under the sun on stuff like that. I just try to practice the moderation that seems to apply to every area.
Joy is beginning to struggle with swallowing certain textures, though we honestly think this has to do more with desire than ability. It’s amazing how well she can chew, swallow and handle her own spoon with finesse when she gets mac and cheese. There is something changing though because we have noticed a lack of ability (mostly when she’s tired). This is actually well before Philip reached that particular loss of skill. Please pray we have wisdom to handle this to best help her.
We see the epileptologist tomorrow with both Joyanna and Philip. We plan to discuss medicine changes for both. Please pray for wisdom for the doctor and us. The decisions we’re forced to make with medicines are very delicate. They can change things so profoundly and we want to make the best ones, following God’s leading.
Thank you again for your prayers. We are humbled by those we don’t even know who lift us up to The Father. We may never get to meet all of you here but, I hope to spend time with each of you throughout eternity, praising the Lord together.