Pics of Christian and Bryant (on the way)

My friend Jenica tooks some precious pictures to remember the pregnancy. She did a great job! Thanks!

Christian is doing great. We are on day 87 of the diet and he is down to about 4-8 seizures a day. We are excited about that. He is much more vocal! Let's us know he is Hungry Now!!

School is going well. He seems to not dislike it so that always a plus! It's still hard to let others work with him when I've done that everyday for 3 and a half years.

It's odd to think that soon I will have 2 sons to love. I know that Christian and Bryant will learn lots from each other. It will be odd to see 2 in the backseat or say I have boy(s) instead of a boy. Eric and I can't wait to spread the love.

Summer pics and diet update

Christian had a great summer of swimming and swinging! His favorites!

We are on day 67 of the ketogenic diet to help reduce his seizures. I am HAPPY to report that he is now only having 7-12 a day! That's down from 30 before we started the diet. We hope that the numbers keep going down. Enjoy the pics and videos.

Going to Preschool

Christian also started preschool in Ozark. His teacher, para's , and therapist are great. He seems to enjoy but we have noticed a little more crying at unfamiliar voices. Not at school but at home. I think he thinks i'm going to leave him. At least he doesn't cry at school. There is a picture with his backpack on.

Day 24 of diet & future events

Well Christian has adapted well to the diet. He is his old self again. We have been running 12-18 seizures a day for the past six days. Hopefully this is a sign of more reduced number of seizures. I'm willing to go a month and a half now that we are seeing some kind of reduction.

3rd Annual Dodging to Make a Difference Dodgeball Tournament
-date and place to be announced. There is a chance we may not be able to have it at Upper Elementary due to the fee they are charging. Also Bryant Elijah( our son on the way) is due around dodgeball time so we are still waiting on the date of tournament. Either i will be very pregnant or have him strapped on me in a carrier:)

day 6 of diet and hospital story

This is Christian day 1 of diet in his stander with his iv pole beside him. We had him stand and wheel around the halls for a change of scenery.

well here is the update-this is easier to implement at home! we are able to get his fat in his diet with oil, butter and mayo so he doesn't have to just drink the heavy whipping cream. he was refusing it and throwing it up the last day at the hospital. i think it was just too much for his stomach. he seems to be getting back to the "old christian". the first few days he just wasn't smiley and happy like usual. the seizures have not reduced any but it's still early.

My hospital story---
So something always happens when we have a hospital stay or visit that leaves me with a funny, sad, or emotional story to share. This story i would categorize under the "o dear, i need some help" category. So here we go. . the last day the nurse takes his iv out and it's not bleeding so she just puts a band-aid on and no big deal. . .except that 45 seconds after she walks out i look down and blood is oozing out of the band-aid everywhere. so i can't reach the call button for help and i have started to collect the blood in my hand(so as not to get on Christian's nice shirt he's wearing) that is not holding christian. i basically have him with one arm and sitting on my legs. i "squat/walk" to the hall and yell for help. the blood is cupped in my hand and spilling out by now. luckily our room is right across from the nurses station. a med student hears me the second time and pops her head out and i'm telling her i need help(as if it's not apparent by a 5 mth pregnant mom squatting in the hall with blood dripping on the floor from son's arm). she yells for the nurses and walks away. thank you med student for at least yelling for the nurses. so then our nurse and several others come to take him and stop the bleeding. I was i'll admit kinda crying and saying "i couldn't reach the button". the nurses were wonderful and stopped the bleeding. there was no big crisis just lots of blood! lesson learned-l1)et the blood just drip on the floor and use other hand for holding child. 2) yell louder 3)apply pressure to bleeding 4)umm probably don't worry about nice shirt:))

day 4-going home!

yeah today we go home! they are nice here but you know it's always easier not living in one room. Christian is starting to smell like greasey fat. uhhh. i think it is seeping out his pores. they will take some final labs before we leave and hopefully we will leave after lunch.

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.!!