Friday, July 29, 2011
One Week
Will has gone one full week without any seizures! It has been so amazing to not have to see even one. I am so thankful for this diet. Even though it is hard, it is worth it to have our William back. The past few days he has been refusing some meals which is completely scary and frustrating. Scary because if Will decides he doesn't want to cooperate anymore we could go back to seizures every few minutes...that terrifies me, but I try not to think too much about all the "what ifs," and just be thankful for the here and now.
Wednesday, July 27, 2011
"In My Ol' John Deere"
Will hasn't been able to ride his bike due to all the seizure activity. It's been pretty sad to have to tell him he can't do something that he loved to do and was getting really good at. We came up with an alternative idea to help him enjoy his time outside and give him a feeling of independence. He LOVES the Gator. He is getting really good at it. He has decided it is most fun to drive in high gear while looking straight up at the sky. It has seat belts to help keep him safe in case of seizures or if Jack is driving (just a tad nerve wracking to watch).
Friday, July 22, 2011
A Mud Pie for Mother
When I wasn't looking I let this happen:
Apparently their beloved book, "A Mud Pie for Mother" sparked the idea. By the time I noticed it really was too late to put an end to it so they got to get really good and muddy. I've had to steer them clear of this same muddy spot several times since.
"The blind leading the blind"
Monday, July 18, 2011
Sunday, July 17, 2011
Keto Kid
When all the doctors and nurses are telling you, "This is a hard diet." believe them. And believe them we did, we just could not have imagined how hard it would be.
Will's favorite things to eat before the diet were things like peanut butter and jelly, gravy and biscuit, pancakes, pizza, oatmeal with blueberries, i.g. After starting the diet: hot dogs, peanut butter (with lots of extra butter), coconut oil and fruit, whipping cream with MCT oil and stevia and vanilla flavoring (I think this tastes pretty darn good myself), ranch (LOTS) with butter added in and a (VERY) few pieces of chicken, and scrambled eggs literally swimming in butter. That's not all he eats, but pretty much. He has lost about 5lbs and sometimes can't understand why Jack gets to have seconds or a piece of bread; that is really hard for me to explain and live with.
When we first started preparing meals for Will, it would usually take 30 minutes to an hour. The reason for this is because everything has to be weighed on a gram scale. If he can have 33 grams of eggs I have to crack it, whip it, then measure it out on the scale to be exactly 33.0 grams; no more, no less. Then measure milk out to 10g, add some whipping cream measured in grams, a few grams of cheese, and a whole lot of grams of butter; it is intense in the kitchen 'round here! But we are getting better.
Will has been remarkably easy to get a long with. I attribute that to lots of prayers. He is still having seizures, but most days I can count them on 1-2 hands. Every week I'm emailing or calling the dietitian and tweaking his diet for his needs. Recently we had to add 10g of MCT oil to every meal to get the ratio higher. That oil is a godsend. It is tasteless, odorless, and doesn't leave a oily residue in your mouth. A lot of times it is the only way we can get the fat high enough for Will's meals. Every morning and afternoon we check Will's ketones. He pees on a little stick so we know how ketotic he is. 160 -180 is the goal. Jack makes me laugh when he goes into the bathroom and says "ketones, ketones," meaning he wants to check his ketones. Oh how I pray I never have to check his ketones!
On Saturday the boys got haircuts and it's customary to get a sucker after you finish. Jack went first and before we could tell the lady not to offer one, she offered. We didn't have the heart to tell Jack no; his life has changed in a big way too. I was sitting by Will and he expectantly and hopefully looked at me. I reminded him about his "magic" diet and that I knew he'd like to have a sucker, but that wasn't good for him. I instead offered to take him to Publix after his haircut, and let him pick out some jello (sugar free mixed with whipping cream). He happily agreed, and my heart broke yet was full with love for this little boy and our Heavenly Father. How good He is. How merciful, how patient, how kind...
Will's favorite things to eat before the diet were things like peanut butter and jelly, gravy and biscuit, pancakes, pizza, oatmeal with blueberries, i.g. After starting the diet: hot dogs, peanut butter (with lots of extra butter), coconut oil and fruit, whipping cream with MCT oil and stevia and vanilla flavoring (I think this tastes pretty darn good myself), ranch (LOTS) with butter added in and a (VERY) few pieces of chicken, and scrambled eggs literally swimming in butter. That's not all he eats, but pretty much. He has lost about 5lbs and sometimes can't understand why Jack gets to have seconds or a piece of bread; that is really hard for me to explain and live with.
When we first started preparing meals for Will, it would usually take 30 minutes to an hour. The reason for this is because everything has to be weighed on a gram scale. If he can have 33 grams of eggs I have to crack it, whip it, then measure it out on the scale to be exactly 33.0 grams; no more, no less. Then measure milk out to 10g, add some whipping cream measured in grams, a few grams of cheese, and a whole lot of grams of butter; it is intense in the kitchen 'round here! But we are getting better.
Will has been remarkably easy to get a long with. I attribute that to lots of prayers. He is still having seizures, but most days I can count them on 1-2 hands. Every week I'm emailing or calling the dietitian and tweaking his diet for his needs. Recently we had to add 10g of MCT oil to every meal to get the ratio higher. That oil is a godsend. It is tasteless, odorless, and doesn't leave a oily residue in your mouth. A lot of times it is the only way we can get the fat high enough for Will's meals. Every morning and afternoon we check Will's ketones. He pees on a little stick so we know how ketotic he is. 160 -180 is the goal. Jack makes me laugh when he goes into the bathroom and says "ketones, ketones," meaning he wants to check his ketones. Oh how I pray I never have to check his ketones!
On Saturday the boys got haircuts and it's customary to get a sucker after you finish. Jack went first and before we could tell the lady not to offer one, she offered. We didn't have the heart to tell Jack no; his life has changed in a big way too. I was sitting by Will and he expectantly and hopefully looked at me. I reminded him about his "magic" diet and that I knew he'd like to have a sucker, but that wasn't good for him. I instead offered to take him to Publix after his haircut, and let him pick out some jello (sugar free mixed with whipping cream). He happily agreed, and my heart broke yet was full with love for this little boy and our Heavenly Father. How good He is. How merciful, how patient, how kind...
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