Thursday, November 28, 2013

First haircut :) :) :(

Justin took Ethan in last night for his first haircut. :) & :( My baby is turning into a little boy. 

Wednesday, November 27, 2013

Please don't think we are asking for donations but some people have asked what we might still be in need of for Jonah. Here is an updated list:

A couple more small spatulas
 A second small cooler/lunch type insulated bags for traveling with meals: The one we have is a called a Pack It. It is very cool but any brand/kind will do.

Urine Ketone Strips: (available at pharmacy):  Walmart sells them at half the cost of Target

Toothpaste: I need to check which brand. Flavors: Original Mint, Cinnamon or Lemon Lime

Medication/supplements:  Money to put towards his medications and supplements.

Special foods: Gift card to a grocery store.

O Clear Water: Sold for sure at Byerly's, not sure where else. Any flavor.

Bicford flavorings: Small bottles are fine.  They are familiar with keto diets if you call.  Otherwise, flavorings can be ordered on their website.

Kids Foaming Hand Sanitizer Alcohol free  Smart & Silky

Extra expense cost in driving to the Mayo  His next appointment is early January.

More small glass containers with lids. We have found that some of our containers are already getting small cracks in them. 

Colored straws: We go through a lot of those. :)

Crafts, stickers or other small things: We are trying to get creative this Christmas and do more crafts or other things instead of baking cookies and what not that is food related. 

Again, these things are just an idea of things we could use for those who are already asking. 

Thanks in advance.

Jonah continues to be doing great on the diet.  We really won't know a whole lot about his seizure control until early January when we go back in for another 24 hour EEG.  It seems like he is having less seizures than before he started the diet but I really don't know being at the hospital they said he was having 3-6 an hour of which we had no clue.  

Jonah's three favorite faces!!

Monday, November 18, 2013

Quick update

Jonah continues to produce large ketones on the 1.5:1 ratio. I'm so thankful for that. The higher the ratio the more creative you really have to be to get in all of that fat. 

If he is upset or maybe really tired he will still have a drop seizure or maybe an eye flutter. Overall, I feel relaxed  about him running around outside, at the store or at church without a helmet on. Before the diet he would pretty much wear his helmet anytime we would go out of the house. It was quite the chore to get him to wear it all of the time. We never knew when he would drop to the ground. 

I'm going to talk to his dietitian tomorrow to see what the next step to move towards complete seizure freedom is. 

Here's James and Jonah with his helmet:
And here's now:

I love to see his face with NO bruises. 

Monday, November 11, 2013

2 week update

I'm sorry to all of you who have been waiting for an update on Jonah. I have been so tired at night that I haven't been up to writing a post. 

Jonah is doing great with his new diet! He eats it wonderfully. Things he never used to eat like macadamia nuts he even enjoys enjoys and asks for now. Macadamia nuts are on his free foods list. He is allowed one free food each day if he is really hungry. So if he gets really hungry we are allowed to give him 1 macadamia nut, 3 black olives, 25 grams of lettuce or 3 filbert nuts. 

It has been a huge gift from God that Barb and Jim have taken on the huge task of preparing Jonah's meals. It really is not an easy task. It can take hours to make a few days worth of food. The fine tuning process like how much raw ground beef will it take to make one small  hamburger patty that needs to weigh 27 grams. 

We are really thankful to all who have stepped in and blessed us as we try to heal Jonah's brain. Thank you to all of you who continue to lift Jonah and our family up in prayer, we feel it. Thank you to my mom who has been coming over EVERY weekday to help out. Thank you to everyone that has donated supplies. We are using every single one, from the pack it to the small containers to the tiny spatulas. Thank you for the meals you had given the rest of our family as we are still trying to figure out how to feed Jonah his "magic" food and then also provide a decent meal for the rest of the kids at the same time. Thank you for monitary gifts for the medical bills that are pilling up faster than we can pay them. We are turley blessed. 

So, the question of the night you guys are probably wanting I know is....

1. Has the diet helped? In short, yes, I think so. Usually if he has a seizure now it is usually trigger provoked. For instance, if he is very upset and crying. I am comfortable with him not wearing his helmet. 
2. Is Jonah still having seizures? Yes, but I would say less. The only way to know for sure would be another EEG. At the hospital they said he was having 3-6 an hour, which of those we would only see maybe 2-3 per day. Today he didn't have any! 
3. Is he producing ketones like he should? The first 2 weeks have really been all over the place. One time I will get a negative reading and the next small and the next moderate. So it has really been changing a lot. His dietition has already increased his ratio from a 1:1 to 1.5:1. Today though he had very large ketones all day. He haven't had that high of ketones since we left the hospital. So that is great, hopefully they will stay up so we don't have to increase the ratio again. Every time we have to increase the ratio he gets less carbs( fruits/ veggies) and more fats. 
4. Does he get hungry with limited calories? Yes, we are working on that. It is really hard when he is crying because he's hungry and it's not time for the next meal yet. 

Jonah eating his veggies at grandmas
His tiny hamburger
This is his favorite meal. He asks for eggs everyday. Bacon 5g, egg 30g, cheese 5g, butter 10g, fruit 80g, veggie 80g, cream 55g