Day 3 on diet

I knew something was off when i walked in the room and eric was holding christian with no shirt on and they both looked tired. Christian threw up at 4 am all over everything. That was apparent by the stench in the air. I'm sure all this fat is a schock to his stomach. Not that big of a deal but not a fun early morning for daddy! thank you eric for dealing with that while i slept at the Ronald Mcdonald house. Luckily they went back to sleep after that. So after a bath and load of laundry we hit the morning running.

Christian is on his full meal menu that we will go home and continue with. He's doing well with the food. A little more no his happy self but that could be just not being at home and having an iv and pricked finger for sugar checks. He has walked in his walker a little.

Seizures
Seizure count was the same yesterday and today by 2 his count was at 9. So that's not bad. Hopefully they will continue to decrease. I probably won't be able to update as much once i'm home but will try to weekly.

day 2 on diet

so we finally got some ketones in the urine last night at 6:30. yeahhhhh! it took longer than most kids for some reason. usually show up after 12 hour fast. who knows?? so we've started with the diet but small scale and then will work up to a full meal over the next couple of days. He sucked down the heavy whipping cream drink. it's basically a measured amount and as much water as we want. this is obviously where he is getting his high fat in his diet. I guess after you fast on water then anything tastes good.

we will be keeping close track of seizures to see if there is a decrease over the next month or two. this hospital life is quite funny all the lingo-flushin the line, nbo (or something, it means nothing but. . .)all i know is it means no food, ketones, and all kinds of other things that i never wanted to have to know. staying in the hospital reminds you of how bad you don't have it. the icu burn unit is on our floor but different hall and i can only imagine what those parents and kids are going thru. i seem to loose track of time or i should say the hours are filled with waiting until the next meal and keeping christian distracted. we are roaming the halls in his stander just to get him in a different position and change of scenery. we pass other kids walking or riding in little cars or wagons. I think the goal is to distract them as much as possible. Others are crying in their room which is sad:(

more to come. . .

he doesn't seem to be fussy due to less food or anything. hopefully he won't. they can adjust his calorie intake if he is. he is having his blood sugar checked every 6 hrs to make sure it doesn't get too low. the nurses are wonderful here!

THANKS for all of your prayers and comments. I hope that the month or 2 to come are seizure free. AND forgot we are 20 weeks pregnant with our next little boy! please keep him and I in your prayers. we are due Nov.9th. don't worry the 3rd annual Dodging to make a Difference tournament will go on just not sure of the date yet.!!

trying ketogenic diet

We are trying the Ketogenic Diet with Christian, to see if it might help decrease his seizures. We are in the hospital for about 3 days to start it. They will need to monitor certian levels in the body before going home and teach us what and how much to feed him. The diet is high fat and low protein/carbohydrates. He is only allowed a certain amount of food per meal. He will be eating exact calories. The diet is tried when medicine does not help control seizures.

Right now he is still having 20-30 small seizures a day. We felt like this would be worth trying. If it doesn't help we just go back to normal eating. Basically your body uses fat for energy instead of carbs. This releases ketones in your body which in turn affects seizures. We are praying this helps.

1st day
I hate doing I.V.'s for multiple days but that's what we have to do. He screamed , it wasn't fun but that's just how it goes. Right now we he is fasting and waiting for his body to produce ketones to actually start the diet. 19 hrs and nothing. Come on ketones!

More to come. . .