Wednesday, July 20, 2011

We've Made It

We have officially made it to 4:1 and we are here to stay. I am so excited to be on a 4:1 ratio now. This means if the diet is going to work we will be seeing results anytime between now and the next 2-3 months. This makes it all worth it. It has been very hard (for all of us) to be working so hard at this diet, knowing that we aren't even up to the right ratio, but we are here now.
Noah is doing amazing at eating his food! He definitely has his ups and downs and his portions are so small that he feels hungry often, but he eats and tries everything I give him. Whatever happened to my picky eater? I don't know but I am so thankful for his willingness to work with us.
The kitchen is no longer a fun place for Noah or myself. Some days I wish we just didn't have to eat. I would be totally fine never seeing a gram scale again let alone butter and whipping cream and I know Noah would love a giant chocolate chip cookie and a tall glass of milk right now.
For now, we are doing our best to make things happy and fun. Yesterday, we took Noah and Isaiah to see Winnie the Pooh (their first movie in the theater). I was able to make Noah some popcorn covered in butter. He loved it! It was so much fun to get away and do something fun and new together.
Although this diet is so extremely hard and there are days we all want to give up, we are in it for the long haul. If it helps Noah seizures it is worth every second in the kitchen, every frustration over spilled cream, every cookie and candy we have to pass up, and every tear. Noah is such an amazing child. We are so grateful for his cooperation and overall great attitude. We love you Noah Aaron!!!

Thursday, July 7, 2011

Poke, Poke, and More Pokes

Poor Noah has been suffering from low blood sugar for the past week. Of course it always happens over a 3 day weekend when you cannot talk to your physician. Thankfully, we have a wonderful and loving camp nurse who has been more than willing to help us with taking Noah's blood sugar since we didn't have a tester. His blood sugar was down to 40 a few times and average is probably mid 50's. Apparently, this is not as severe as we were thinking. I talked to Noah's nurse on Tuesday and she said when you are in ketosis you may have low blood sugar but it doesn't usually cause you to be as symptomatic as you would be not in ketosis. However, he has been pretty symptomatic, especially in the mornings. He wakes up very irritable, lethargic, and mumbling his words (pretty much the same way I do). We have given him a few teaspoons of apple juice a few times and he immediately perks up. I have been making his breakfast right away in the mornings and we split his lunch up into 2 snacks so that he doesn't go as long with out eating. This seems to be helping.
Other than his blood sugar he seems to be doing pretty good. He is doing just fine on a 3:1 ratio. We are going to give it another week to hopefully normalize his blood sugar and then we will be bumping up his ratio one last time to 4:1. It will be nice to finally be at 4:1 for many reasons. Hopefully we will start seeing some good results of this diet and less seizures and also I will be able to start mass producing some of his meals. We keep changing his ratio so I pretty much just do one or two meals at a time but when we are on 4:1 I can plan for the long haul.
Thank you again for all your continued prayers for Noah. We are finding some good recipes that he is enjoying. Lately, his seizures seem to be decreasing but his kind of seizures are really hard to notice, so until we have an EEG (hopefully in a month) we won't know for sure.

Here are some pictures of what Noah has been up to lately.


Noah and Jon tubing behind Nana and Momo's boat.

Climbing trees and being a monkey.

Singing on the 4th of July down at fireside.

Noah got a "Houie" just like Isaiah's from the doctor. They were both very excited.


Book time with daddy on the 4th of July.

Boating

Friday, July 1, 2011

3:1 ratio

We now have officially switched to a 3:1 ratio. 3 parts fat to 1 part carbs + protein. I am always surprised how much moving up one ratio makes. Noah's portions are almost cut in half because most of his calories are coming from his cream (which he still is not a fan of but tolerates it in soda). Noah has 4 meals a day (or 3 meals and 2 snacks) and each meal has 350 calories. When he was on a 1:1 ratio his meals were very large but now since most of his calories are from cream they seem so small. Even though he is getting the same amount of calories he says he is hungry often just because he isn't "chewing" much. Last night we tried miracle noodles. They don't have any carbs or protein just plain old fiber. I was nervous to try them because he is a picky eater and they didn't look good to me but thankfully he ate them without any problems. The nice thing about these Miracle Noodles is that he can have as much as he possibly wants since they don't have any calories. Miraculous, right?
Two days ago I found a chocolate peanut butter cup recipe. It contains butter, no carb and no sugar chocolate sauce, sweetener, and peanut butter. I freeze them in molds and pull them out for his evening snack. He loves them!!
Lately, Noah has been very lethargic, irritable and depressed. Yesterday, he cried for an hour and said he didn't know why. Today I took him in for some blood work to make sure everything is ok. It was nice in the hospital because they checked his blood often and we knew what was going on in his body all the time. We are now waiting on his results.
Please continue to pray for our precious boy. Its hard when you are on such a strict diet and we aren't seeing any good results yet. We still have a few months before we might see any change in his seizures. We are so thankful he is willing to try foods he would have never touched a month ago. He is being so brave!