Rodeo

It is a full fledged rodeo around here. Cole is the wild animal, and we are trying to ride/catch him. At this point, I am SO losing. Cole has won every round and I won't even get a consolation prize, unless I get back on my horse. Having come from the land of rodeos myself, this analogy just makes me laugh. Cowboy up!-might just become our new motto around here :)

One analogy that is more descriptive is something my good friend Ashley said today comparing a game and its sneaky moles to health problems, "It's like playing Whack A Mole, no sooner is one mole down than another pops up...and if you're really unlucky, several pop up at once". So true! I don't think that I am getting tickets anytime soon at this game. I've always had a hand-eye coordination thing anyway :)

I have prepared for this diet for six months. It is working-and that is amazing! However, unless I can get him to eat and take his medicine, it won't work anymore. Cole has gone from having around 20 drop seizures a day before we went into the hospital, to having less than 5 a day. He is averaging one or two right now. I may be assuming something here, but I think that we can put the helmet into a drawer! He has also beat his previous record of 11 days without a partial. If he can make it through today, it will be a solid two weeks! However, it seems that every minute is a struggle. This is so life consuming, the things that I just barely got done before (like cleaning the house) have been put off for at least a month until we can get a routine. Cole is refusing to eat the majority of his meals. If he does not eat it all, the ratio is off and it doesn't work. He is refusing all medication. It seems like I have tried a million different things to present medication to him, but I think it is a behavioral problem (plus they just taste nasty now, even with flavoring). My mini-hulk is so strong that I can have him strapped into his booster seat, holding his hands, using a syringe in his cheek and he can somehow find a way to hang his head upside down and spit out the medicine.

With the food on this diet, there are hardly any vitamins and minerals. So we have gone from taking just one medicine twice a day, to eight. He has never been a real fan of meds anyway, so this is hard. At this time, we have just stopped trying the supplements and only want to get the Keppra (seizure med) in. However, if this continues and he only eats a little and doesn't take his supplements, we will be heading back to Primary because he WILL get sick. I'm trying to avoid that if I can. Our friends little boy just had to get a feeding tube because he has refused to eat. Cole's ketones are dropping, so we are keeping an eye on them. We got a glucometer to check his blood sugar after it being 24 in the hospital, but he hasn't shown signs of low blood sugar yet. I think it is because he continues to take fluids.

I did not prepare myself for all of the guilt I feel when I eat. Such a hard thing, because I love food. I knew it would be difficult to have things that he can't, but it just breaks my heart. I grabbed a box of Mini-Wheats the other day because I had not eaten all day and needed something quick. Cole saw me and immediately started begging, "cereal, cereal!" I had to hurry and pour the bowl and eat it in my bedroom. I ate my dinner in the basement the other night because my good friend brought me delicious stuff like homemade bread and stuffed baked potatoes. It's hard to tell a two year old that he can't have something you are having. Especially hard when he is not eating anything in the first place, so you just want to give him anything he has interest in.

We also did not realize how long shopping takes. Instead of going to two or three stores, we are now going to seven or eight. You can only get Carbmaster yogurt and Fruit 2 O at Smiths. Target is the only place that carries Walden Farms no carb no sugar chocolate syrup. Vitamins, cheese, everything has to be the right brand. The hardest thing has been hand soap! Glycerin is broke down like sugar and turns into carbs. EVERY soap is made with glycerin! I was wandering the aisles with my lists of things that are okay on the diet, which brands I needed for Cole's specific meals, what are other forms of sugar and carbs, etc. I am sure I looked comical with all of my papers.

I now have all of these alarms in my phone to eat, check weight, go to the bathroom-it feels like every 30 minutes we are supposed to be doing something else. It really seems like we are complaining, but this blog is like our journal and we want to remember how everything was. Hopefully we can look back and laugh. It will get easier. We would do anything for Cole and all of this struggle is worth it if it will make his life better. Even if it means eating in the basement. I just have to cowboy up and hold on for dear life.