We are still waiting for the new diet ratio. Philip had blood drawn on Wednesday morning so his doctor could see current levels. She has two different panels checked--one for ketone levels and one for glucose and acidity. Somehow, part of his labs (the ketone levels) got sent out from OU Children's to another lab. We have had that issue before but thought we got it resolved the last time he had blood drawn. The problem with sending out blood to another lab is it just takes longer than "in house." She received the glucose and acidity back quickly and they were fine but we are still waiting for her to receive the ketone levels from the other lab. She needs to see those levels before she okays a change in his diet. She was going to do her own checking into the lab orders to get it fully taken care of for next time. He will have to have bloodwork done often enough within the next year, we don't want this problem every time.
The last few days haven't been great, although he is tolerating the whipping cream now. At least he is not protesting every time he gets a bite in his mouth. He is still drinking great!
My biggest disappointment this week is that he has lost a little more of his ability to turn the pages in his board books. Philip has always loved books. He got so frustrated when he couldn't turn paper pages anymore. We finally just put all those books away because of his frustration and because he was tearing them up without realizing it. We left the board books out because he and Joyanna could still enjoy them. Now, this week he can't get his fingers working independently enough to turn the pages in the board books. He ends up looking at a couple of pages over and over again because all he can grab is several pages at once. Some books have smooth enough edges that he can't open them at all and gets so frustrated. Of course, Ben or I can still read to him but when we didn't have the chance to sit down and stay for a while, he would look at books and be content.
We are planning to send him to school on Monday. I think he will really like getting back into a classroom environment with his peers. We met his teacher on Thursday. She seems very nice. She has a daughter that is mentally handicapped, so I know she understands. She also has mostly boys in the class. I know Philip will enjoy that. He'll also enjoy getting back on the bus again. Adjusting his schedule might be easier this time since he won't eat lunch at school. His school is closer this time so he will actually make it home for lunch each day. That's nice for his teacher since his meals are complicated now, and nice for us because, over the summer, he has gotten used to napping right after lunch.
Over these last few weeks, the Lord has really been working on me. While we were in Dallas, I began thinking about prayer and why the Lord wants us to pray, how he wants us to pray. I don't have all the answers to my questions but am determined to seek His Word to grow me in this area. I want to pray according to the Lord's will and yet the Lord himself commanded us to ask and seek and knock. I don't believe it is wrong to ask for healing. Jesus received many parents with compassion who asked for their child's healing, but I know He wants us to be willing in our hearts to accept whatever is His will, even if it doesn't mean healing. I know of many parents who didn't receive healing for their son or daughter and God showed Himself mighty in their situations. I also know for me that I can't dwell on the "what if's", instead looking at the blessings given to me now. I am blessed with a husband who is so faithful, involved and a good provider. My network of friends and family is amazingly supportive and any of them would do almost anything to help us. The Lord has provided over and above for our material needs. The Lord Himself is ever present. I can't imagine how a family enduring a similar situation could go on daily without His grace. Even as I type these things to be thankful for, the Lord measures His grace out again.
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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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