~seizure FREE me~

~seizure FREE me~

Tuesday, June 15, 2010

Our first successful outing!

I survived my first party out with Atty...and so did he! There was food Every Where!! Food that he couldn't have. Food that his brothers could have. Food that everyone else was eating. You don't really notice those sorts of things until you have a kid that can't have that food. I packed a lot of food for him and it was a good thing I did because he was fixated on food. His brothers ate a little and then went to play, Atty on the other hand kept saying he was hungry and wanting to eat. He almost lost it a couple times when I had to start telling him no and that he had to go play. It was getting ridiculous though how he just wanted to sit next to his cooler and eat and eat and eat! I'm glad I brought his Stevita drink mix because that helped smooth over a few situations and there was plenty of water available to mix it with. So this is what I did that worked. I brought a little cooler and packed it with:

  • His special muffins I made that morning, I decided to put some of his strawberry Stevita powdered drink in his magic muffin mix instead of plain stevia and I'm glad I did. It made them even more delicious! I made sure he was really excited about it so that he was looking forward to his special treat. I brought 4 even though we were only going to be at the party for about three hours. Good thing I did because he blew through every one of them! I saved one for the last in case there were any treats and it's a good thing I did because there was some cake that ended up getting passed out. He didn't even care about it because he had his muffin.

  • I packed 2 cooked hot dogs with a cold pack and he ate those while his brothers ate there food from the BBQ. He can't have the regular hot dogs because of the fillers, and he doesn't like hamburger patty's plus people often put marinate on the patty's that he wouldn't be able to have.

  • I made him his flax seed meal crackers, for a filler just in case...he ate them too.

  • I packed nuts to snack on.

  • I packed his Stevita powdered drink mix, so glad I remembered that because he definitely noticed when his brothers got juice.

  • I packed him an avocado and he ate the whole thing.

  • I packed 1/3 of a banana (5 grams of carbs), I also went ahead and let him eat 1/3 of a piece of watermelon (another 5 grams of carbs) and I just left the carb out of his dinner that night. He really likes watermelon and so do his brothers so they were eating a lot of it and I didn't want Atty to feel totally left out.

I did get a few funny looks when I talked to Atty about his special magic diet, as we are calling it, but that's okay. I made sure to be proactive and voice out loud a lot about the fact that he was on a special diet and couldn't have any food except the food that I brought him. I felt a little pushy and over bearing but I know it's so important that there aren't any mistakes so I just tried to be as friendly about it as possible. And I hovered, I'll admit it. Maybe at some point I will trust that he won't get his hands on non-diet food, but for now I am on super high alert. That being said he has still almost got his hand on a few things not on his diet while we were at home. Just the other day he snuck and eat some raw carrot left over from one of his brothers lunch. I then had to skip his carb for dinner because I didn't know how much extra carb he had consumed. Which is why when we were at the party I felt like I had to be extremely cautious with him. It would be too easy to loss track of the seriousness of the issue in the middle of all the chaos, it's easy enough to do that at home. It's hard because people who don't know him would not be able to tell that he has a serious health issue and wouldn't know to stop him if he grabbed some food, or they wouldn't know not to offer him something. One seemingly harmless slip up could cause him to have seizures. Just one slip up. I'm tossing around the idea of making some sort of cute tag to pin on his back at parties that lets people know he can't eat any of the party food, but I'm not sure yet how I feel about doing that to him. I'm going to get him a medical alert bracelet, but there's not a lot of room on those for the details and they are not always all that noticeable. He is starting to learn at home to bring me any food he finds and he's been being pretty good about it (except for the carrot thing). I'm repetitively using the term magic diet and talking about Atty's food and other people's food and he seems to be picking up on the difference. I am hoping that at some point he will be able to speak up for himself and tell others if they are giving him something he can't have. Maybe I'll be able to relax a bit then. Then again maybe not... Hopefully he will understand better at some point the importance of this diet. I worry though because he has to be on it for at least two years and if he stays seizure free he won't remember the seizures he had at three when he's four or five. The importance of the diet might be lost on him. I've really got to stop worrying about things like that though and instead focus on the here and now. The here and now seems a little less intimidating now that I have survived my first party with Atty! I think the only thing I will change for future outings is that I will wait to give him the carb I bring just in case there is a carb that he wants at the party (like he did with the watermelon) I also need to get a big measuring cup I can bring with me so I can measure out the right amount depending on what it is that he wants. I will copy the page that has those measurements on it and bring it with in the cooler. I will also remember that I do have a little wiggle room in the sense that I can leave out a carb in a regular meal if needed. Like I did when he wanted the watermelon. I started to stress out about it and I did say no at first but then I realized there was no need to make it a sad thing when I could just not give him a carb later to make up for it. That sort of thing is okay every once and a while. As long as he gets no more then his 15 grams total for the day he doesn't necessarily need them split up into his main meals.

Another day down...another hurdle crossed and we continue on this journey.


Lisa said...

Good for you, and good for Atty! If you want any feedback on what you're thinking about making him a tag on his back, my first thought was that he would be "labeled". I think you did great your first time out, and all other adults need to be adult about it, and be proud of what you are doing for your child. Being pushy and "loud" about it is your prerogative, and you should continue feeling confident in what you are doing to SAVE YOUR CHILD'S LIFE! Good for you, I say!

Riahli said...

Yeah Lisa that's my hang up about the tag too, I don't want him to feel labeled. But then again I don't want him to have a seizure either. I don't know that he would notice at this age, and when he is older my hope is that he will be able to tell people himself. He's a bit behind in his speech and doesn't express himself very well right now. I know when we go places like to church they put a tag on his back (on all of the kids) with his name and the fact that he has allergies. He hasn't gone since his seizures started but I'm pretty sure they would add that too the tag as well. I probably won't make a tag, we don't go to a lot of parties, but if it becomes an issue and I feel he would be safer that way then I will.

Niecey said...

Your story is so inspiring. Well done for sticking to your guns on this. It is surely challenging, but soooo worth it.

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