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. . .

Christian's 1st Fishing Experience

Christian went fishing with his daddy at Lake of the Ozarks and caught a BIGGGGG FISHHHH! We have pictures and videos to prove it. There's also video of Christian walking!

still working!

The video is of Christian practicing to keep himself up while sitting.

i wanna hold your hand

Monday went ok. Christian seemed to not be himself. And later that night he woke up every 2 hrs due to being congested so he's a little sick nothing bad but we took tues off to let him rest. He was pretty blah on tues. But today he did really well with what we worked on.

new walker
Today we worked more in the walker you will see on the video. I like this one because it keeps his body in ailignment and he just walks more correclty in it. He's still slow but that's ok he's getting more used to it.

Today I had one of those moments where I thought wow this is new -never done this. As Christian walked in this walker I held his hand. It's just something that I've never experienced-Christian being upright, moving, and holding his hand. It was a delightful treat for me and he seemed to enjoy it. Enjoy walking hand in hand with your child! This wasn't one of the best video's but I didn't catch him on camera the other times today when he was walking.

happy mother's day

" I"m working hard Miss Brandy"


During this week Brandy was really trying to see what Christian needs the most work on. She will be focusing on stretching out his inner thigh muscles and getting him to really use both legs at different times when walking. Hard to explain but he will be doing a lot of walking, standing, and sitting while propping or pushing up with his arms. The idea is to get him doing more by himself or with less assistance.





HAPPY MOTHER'S DAY


I always thought I'd be a mother one day. You know change diapers, run in the park, tell your child no. . . all the typical mother things. I never thought I would be the mom of a child with special needs. I don't think anyone ever anticipates that your child will be anything but healthy and typical development. I must admit that at times it is extremely challenging and sad. But I can honestly say that those times are very few. I am more overwhelmed and thankful for the smile that Christian has all day and his ability to work harder than I (as an adult) could ever imagine. Like I always say it's just a different way of parenting. Thank you Christian for making me a mom!!! I luv you for all times!