No More Food Scales
We mentioned that we were planning to stop the diet but Philip’s last day on the diet was June 2. That day we took the whole family to McDonald’s (courtesy of Poppa and the gift card he sent in the mail!) and Philip had fries for the first time in 10 months. He did enjoy them! We were still trying to ease him back into a regular diet at that time so he also had the cheeseburger without the bun and some yogurt. We specifically went to a restaurant with a playplace and Joyanna and Ethan had fun climbing and playing…oh, and daddy, too! J Since the diet has been finished, I’ve found things that I had forgotten that Philip liked so much—regular milk, casseroles, stews, cottage cheese, yogurt, crackers, and lots of fruit. He has enjoyed all of those. The first week he was off the diet, we didn’t really know what to expect. Our first thought was that he would decline a little quicker, since the diet did help him a little bit in July of last year. However, the first week was a great week. He was happier and seemed more content. Maybe eating some of those things and just eating more in general helped him to feel better. The second week was a typical down week, then the third week was the craziest week our family has had in quite a while so it was impossible to evaluate poor Philip with all the craziness happening around him. We had our HVAC replaced so we were living with my sister-in-law and her husband for a couple of days. Philip had 4 appointments and it was Vacation Bible School at our church. I did not take the two boys but Ben drove a bus for the week and Joyanna went with him almost every day. Everything was a little helter skelter and you could sense the wear it was on Philip. However, once Friday came, appointments and VBS were over and we had been back home for a couple of days, you could see Philip begin to relax and get more sleep so he felt better. Yesterday and today have been okay days. I think we’ve mentioned in the past, maybe even before the diagnosis, that the best way to describe Philip’s progression is the highs get a little lower and therefore, the lows get a little lower. I think that’s continuing to describe his days.
What Are The Days Like?
Philip can still sit up some on the couch on good days, although he leans over on a pillow to rest quite a bit more. He can still see a little bit, at least enough to find his toys in front of him. He can grasp those toys and therefore is able to play a little. He has his favorites--a wooden toy mallet with a cylindrical handle he can hold easily, a plastic snake, a rain stick that has beads that fall and make noise, his duck that his teacher made for him, a Little Tikes hammer that bangs and boings, and every few days or so he takes a renewed liking to the flag his Full Circle Family gave to him. What makes him smile or laugh? The flag from Mrs. Lisa that plays patriotic songs, saying ‘Boing’ and other sound effects that are similar, certain songs, when the bee gets him (I tickle his belly and say, ‘bzzzz’), Daddy sticking his head into Philip’s belly and getting him. There are two that almost always make him smile. Spinning has always been his favorite and still is. It’s a little hard to accomplish these days. The only way right now is for me to hold him in my lap in the computer chair but that’s only as long as Mommy can take the spinning. Philip would love to go longer. The other is true testament that he’s a boy—bodily noises. Whether it be a can of flarp (noise putty) or a whoopee cushion, it can usually get a smile if not a downright giggle out of him.
NCL is known for causing sleep troubles. I don’t know everything about the why of that yet but we’re seeing the signs. Philip seems to be waking more at night although sometimes he is quiet so he doesn’t wake me. He still naps mid-day after lunch and seems tired at different times throughout the day. He is drooling more and his ability to chew and swallow can fluctuate with the day or even time of day. His seizures have increased a little I would say since we’ve gone off the diet but we anticipated that some. Please pray for us that we would make wise medication decisions that will be in his best interest. It’s hard to know whether to medicate more or less and which will help him feel better without a lot of trial and error. God can guide us in those choices we know and we are trusting He will show us along the way.
I pray daily for God’s grace for Philip. I feel there is so much I can’t do for him, especially when he is upset. I try all I know to do and then just pray that God will take care of the rest. Recently, God has answered that prayer several times by calming Philip when I haven’t known what to do. I remind myself often that God loves Philip even more than I do and is capable of taking care of his every need. He is doing the same for us.
Oh, and of course, words can’t express my relief about Joyanna. I feel like God has given me a gift. Then, it reminds me how God has given me so many gifts, not only my children (all three of them) but so much more. I couldn’t write it all here so I won’t try. Thank you, LORD!