We are now almost two weeks into the 4:1 ratio and Noah's seizures seem to be lessening! Noah still may be having the absence seizures but visually, to us, the seizures are much improved. Next Thursday, we will be in the hospital for a 24 hour EEG to see if things have indeed been improving. Noah's response to the 4:1 ratio of foods has been mixed. He has a few favorite meals that he eats without problems, but most meals we have small issues and frustrations. Even though we are thankful for what the diet seems to be doing, we are all already longing for the day (which could still be years away) when Noah is done with this diet. Yesterday we went to a local farmer's market and Noah told us, "When I am done with my diet, I am going to go to the farmers market and get ice cream!" Overall, he seems happy, but we know this lifestyle is taking its toll on Him. Also, Candice spends 2-3 hours in the kitchen each day, making Noah's snacks and meals since every snack and meal takes special attention to get it perfectly right. We long for the days of stopping by McDonald's and paying a small sum of money to have someone else make our food!
Bud and Cassie, Candice's parents, have been incredibly helpful on this journey. Candice and I have enjoyed a few date times and Cassie knows how to make Noah's meals and snacks. It is a very welcome break from the routine, when Noah goes over to Nana's house!
As long as Noah's EEG comes back positive, we will be continuing on Noah's diet for the indefinite future. We will also begin scaling back the two seizure medications that Noah is currently on. Although long term, it will be great to see if Noah can be seizure free without medication, in the short time it will be another season of learning to trust in God as we taper back the meds. Although life has been super crazy since Noah's very first seizure 1.5 years ago, we have so much to be thankful for and God continues to bless us with so much.
2 comments:
Thank you for updating everyone on Noah's condition. I think about your family often wondering how life is going for you all. excited to hear about the next test results. Hope camp life is going well. God bless you guys in this journey. As hard as it is for him now, Noah will appreciate every gram counted when he is older. you'll probably get some awesome mothers and fathers day presents later...:)
Thanking God for these positive signs and still praying for good stuff with the med tapering
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