Friday, November 18, 2011

New features

There are some new tabs at the top of the blog!  I'm still working on some of them, like I want to add a video of me making a keto recipe, but that will come in time.  There is also info about Jack's special needs trust and if you are new to the blog you should read they "Jack's story" tab.  

Feel free to leave a comment on this post to make suggestions! 

Poor Sick Monkey! (and TSC camp)

 We went to TSC camp the first weekend in November and Jack got sick there.  Saturday morning he threw up his dinner from the previous night by gagging on one of his supplyments.  We didn't think too much of it and have been surprised that he even willingly takes the supplyment because of how nasty it smells so we passed it off as that. 

We had a good time that day.  Jack played a lot.  Here are a few pictures.  (And a few were stolen from a friends facebook page :-)  

We are on the far right, sitting down. 


Jack loved watching the archery, so we stayed there for a while.  And my mom decided to make a bet that whomever hit a card (they had playing cards pinned to the target) would get dinner cooked for them.  I hit 2 so she owes me dinner!

He didn't eat breakfast well though and refused lunch.  I got him down for a nap and then Jonathan and I went to the parent meeting.  About 1/2 way through the meeting I got a text from Ron (my mom's boyfriend) that said "Jack is throwing up, we need you".  So of course I ran back to our cabin.  By the time I got there they had him cleaned off and the laundry in the washer.  We gave him a bath in the sink and after you could tell that he had a fever.  I called the on-call doc at our pedi's office because I wasn't sure where in the camp his neurologist was, and this was clearly not a neuro issue anyways.  He had some other strange things going on but our first concern was that he might have a blockage somewhere because of how the food was coming back up in whole chunks.  Thankfully his belly was soft and he was acting mostly normal.  But she still wanted us to keep a very close eye on him.  We did go find his neurologist and his nurse, who were all there, and once we talked we all decided it was best if we packed up and headed home. 

We didn't want to leave camp early because it's something that we look forward to every year, but we didn't want to get anyone else sick and if Jonathan and I were going to get sick, being at home would be much easier!  Plus if we ended up having to take Jack somewhere we wouldn't have wanted a 3 hour drive to get back to our local hospital.  His fever did spike in the middle of the night, he didn't eat for 2 days (and if you aren't on keto, it's not as big a deal, but I had to syringe apple juice into him so that he didn't have to go to the hospital for an IV with some sugars because the body does need SOME carbs) then he had diarrhea for a week. 

I was told that he wasn't really contagious and as long as we washed our hands he would be fine, so one day last week I took him to the mall to get out of the house.  We rode the train, which he loves, and saw that Santa was there already.  Jack ran as fast as his little legs would let him to Santa.  It was really cute.  We chatted with him for a bit because no one else was there and we gave him some Seize Hope bracelets which he still uses to hold his gloves on. 

While we were there Jack did this strange thing where his eyes would get really big and he would go stiff for about 10 seconds.  Of course my first though was that it was a seizure and it really worried me.  But we decided to chalk it up to stomach cramps.  It happened 4 times that day and one the next.  He got better though and then everything seemed fine. 

Of course now he has a cough and a runny nose.  Blah!  I'm not a huge fan of this time of year because of this.  For most kids a runny nose isn't a big deal but previously, Jack being sick was big seizure trigger for him.  He would always have more seizure when he was sick.  Then yesterday I had him at the mall again and he was riding this tiny carousel and I KNOW that he had a seizure.  There is no doubt that it was and it took everything in my not to burst into tear right there.  He knew it was happening and he was scared.  It was pretty short, only about 30 seconds, but it was still probably the most crushing one.  It doesn't mean that the surgery didn't work.  They give 6 months for the brain to heal from surgery before they really start counting, but they still ask if he's having seizures and it is not at all a good sign.  Needless to say I had a few drinks last night. 

Freedom in Food

We have been floundering a bit to figure out this new Modified Atkins Diet (MAD for short).  The nutritionist has been slightly helpful but the biggest part of it is simply logistics.  We have to make sure we always have food in the fridge that we can eat (it's extremely difficult for me to cook when I'm the only one home with him because he still wants to be very close to me), and also at least a snack in my bag.  I have discovered some great nut packets that only have 3g of carbs that I can stick in there for emergency situations.

On keto, Jack was getting about 12g of carbs a day.  Now on MAD he can have 20-25 a day!  That is a huge difference.  We also no longer have to restrict his protein intake so he can have as much as he wants.  The other night he kept saying "beef" for the pot of stew I made!  I've also done fried chicken and made peanut butter cups.  All of the recipes are modified, of course, but my keto experience has helped in the creating of yummy low-carb food. 

Jonathan and I are also following a low carb diet now too.  We want to lose some weight and get in shape so I have re-joined the gym and actually have a meeting with a personal trainer this afternoon.  I only need about 8 more cups of coffee before I'm ready because Jack woke up at 4:45.  Anyways, Jonathan and I now don't eat anything in front of Jack that he can't have.  With the acceptation of coffee that is.  Jonathan usually doesn't leave for work until 8 so we all sit down to breakfast together.  Usually it's eggs and sausage or bacon with either acorn squash or strawberries.  Jack just gets extra butter and cream in his eggs.  But on occasion, if it is requested by the little man, I will make something like waffles.  I have an apple waffle recipe that has just over 5g of carbs and is made of ground nuts, egg, and a few other things.  It's very good!

I have weighed out most of his carbs for the last week, and there is just no way he would eat the volume of 5 carbs of veggies in one meal.  It's huge compared to what he was getting.    On keto we counted every 10th of a gram of carbs, so the carbs in eggs counted, the carbs in avocado, in sour cream, in heavy cream, in EVERYTHING!  Now, I count his veggies at up to 5g a meal, which I know he isn't eating that much, and then the side of avocado with oil I don't count.  If I give him a cream soda (heavy cream, sparkling water and flavored stevia) then I make sure he doesn't get too many carbs in his veggies, and I count the carbs from nuts, but the freedom we have found in playing with his meals is incredible!  And sometimes a bit overwhelming. 

We are trying to stick to eating 4 times a day because it has been working for us.  That was all he was allowed to eat on keto but as long as he eats well, it works fine now too.  Doing this I know that I can plan 5g of carbs for every meal (making 20g a day) and then I leave the other 5g as wiggle room for things like cream, avocado, etc. and extra nuts or cheese between meals if he needs another snack. 

As you can see by my rambling, there is a lot of thinking going on over here about his food!

But I will tell you this, it is awesome to all be able to sit down at the table and eat together.  To let him try things from our plate, which of course he would prefer to his plate even though it's the same thing.  To be able to let him mostly feed himself!  We now have to take his shirt off before he eats but he gets so excited when he gets something on his fork or spoon and has to show us before he eats it.  Then he claps for himself!  We no longer have to scrape the bowls with a spatula, or make sure he finishes every bite!!!!  I can not tell you the stress that has gone away from that alone!  He also doesn't have to eat off the floor anymore, but he still does on occasion.  We are having to re-train him to know that he doesn't have to do that anymore.  The dogs are very happy with the new situation too.

And we can finally go out to eat with him!  We celebrated with a big dinner at a local steak house with family and friends.  Jack was very excited to see his cousin Grace and then not so happy when she was shy when she first got there.  So he threw his fork across the table at her but thankfully didn't hit her.  Did I mention that he's very 2 now?  But he ate all kinds of things and tasted lots of new tastes.  He will try anything that we offer but he often spits it out after we put it in his mouth.  I think we took him out every day for the first 3 days.  I try to take either cream soda or avocado with us as a side of fat and then we just order protein and veggies.  We have to be careful about hidden carbs so we are underestimating I think, but I would rather underestimate than go over.  

But the moral is that we all really like the new diet.  I am so excited that he gets to eat Thanksgiving dinner with us.  I think I'm even going to make some of his special cookies to share with everyone.  We were at a gathering the other day and his cousin really enjoyed feeding him cheese.  We are going to have to watch that one though because that night he had awful stomach cramps for about 3 hours.  I was worried that it might be kidney stones for a bit (another common side effect of keto) so we want to make sure that doesn't happen again.  Plus cheese does have some carbs and he would eat a whole block if we let him. 

As we experiment more and come up with new things I will post some recipes and pictures.  But for now, here is the fried chicken:

I took organic chicken breast and dipped it in egg.  Then the breading is equal parts of almond flour and parmesan cheese.  I then fried it in coconut oil, which is MUCH healthier than vegetable oil.  Super yummy!