Philip is continuing to do well in school. He seems to enjoy it still. He still loves to ride the bus everyday and that's no surprise. It's so cute when I get him off at noon. He wants to stand in the driveway as the bus pulls away and wave bye-bye. Joyanna, Ethan and I have gotten into a pretty good routine as well. My house is the cleanest it has been in months and Joyanna is responding well to a little more one-on-one time with Mommy. Ethan is growing like a weed. He loves to look out the window, especially when it's a pretty day like today.
We stopped the decrease of Philip's third medication for a week just to get a bearing on his response. Yesterday, after talking to his doctor we started decreasing again. He will just have two more weeks until he is completely off this med. It doesn't seem to be making any difference in his seizure activity or progress/regress. Honestly, we would like to be completely off and give him a few weeks to level out before he starts the ketogenic diet. (I'll just call it the keto from now on.)
We still don't have a date for beginning the keto, but we meet with his doctor on Tuesday. I doubt she can give us a date then but she might know when the dieticians will be certified. As you might guess, our thoughts are on beginning the keto quite a bit these days. We are eager, I won't try to hide it. It will be a change for Philip and more difficult to maintain than his current eating habits but I am almost certain now that it will make a difference. As I read through one particular story on the Charlie Foundation website, I was encouraged even more. A boy in Norway developed uncontrolled epilepsy at 4 and went through the bevy of medications. He had an extended illness at one point where he had no seizures during the illness then they returned when he was well, similar to Philip's story in February. In later years, a doctor caught this fact in his medical history and suggested the keto. After only a few days, he was seizure free. This makes me think that the keto will at least help Philip's seizures to decrease, if not stop all together. The keto imitates a fast but is a sustainable diet where you get almost all of your calories from fat. In a sense, it tricks your body. The body produces ketones and the rest of what happens in the brain is essentially unknown except it has really good results in people with uncontrollable epilepsy. Ben found a .pdf from another website that did a decent job explaining the keto in an understandable way without lots of medical jargon. You can follow this link to download the .pdf. Keto Diet Info
With the keto coming soon, Ben and I would like to give everyone who is praying for us an easy way to remember how to pray for Philip at this point. The best case scenario for the keto is as follows: In 2 to 3 days, all seizures stop. In 2 to 3 months, one can begin to wean off all medications. In 2 to 3 years, one can wean off the diet and be healed. Many have testified to returning to a normal diet and never having seizures again. This sounds like a miracle, especially after the last year we have been through. So we are asking everyone to pray for the "2 to 3 miracle" for Philip. We are being realistic and keeping in mind that the diet might not make any change for him or that it will only help decrease seizures. But at this point, a decrease of any kind will be better. As we have said, ultimately, we know healing is in God's hand but he does tell his children to ask. So, that is what we are doing. I know many of you want to join with us in asking God for this miracle. We have a miracle-working God. He is sovereign and He is able.
Hopefully, I can post something before another week goes by! :)