Survival

We are surviving, even if feels like just barely :)

I feel that Cole is having a good response to this diet, even though he is not compliant. How can I argue the cold, hard facts? He was having on average 22 drop seizures a day before we went into the hospital. The most he has had this week on any given day is 4. Still no partials, tomorrow will be a solid 3 weeks without a major seizure. SO-the torture is worth it. Right?

I can see why so many people stop the diet. It is hard, frustrating and a whole bunch of other things. Cole is still refusing to eat all of his meals. Which to some people seems crazy, given that it is such a tiny amount in the first place! I will even ask what he wants and try to build a meal around it with my very limited menus, and he still won't eat. So we are switching his eating schedule to only 3 meals a day, no snacks. I have to scrap all of my prepared food. I never thought I would be so emotionally attached to tiny meals, but it's the time that it took to make them that gets me frustrated I guess.

Medication continues to be a struggle. For a couple of days, I thought that I had found the secret. Mixing it with a little diet soda, calling it "pop" and offering it to him in a glass. It worked! But only for a few days. He is back to having to wrestle, put him in a headlock and syringe as much as possible while he is spitting and biting. I have even offered him the syringe, put it on a spoon and a million other things. I am trying a structured behavioral feeding program that his speech therapist gave me. It is labor intensive and does not always have results. He is just too smart. On that note, his speech therapist brought his testing results back to compare the 6 months he has been in therapy to where he was when he started. Cole is still delayed by almost a year in fine and gross motor skills, critical thinking and most other areas. A silver lining to everything was that he is actually advanced in language development! He tested in the 5th percentile in December. He basically could not even talk. Now he is at 33 months, when he was 28 months old during the test. This is incredible news! The test can not be completely accurate sometimes and he still has a long way to go, but it makes us know for sure that he is making progress.

I am not sleeping again-not cool, but somehow I get the things that I need to done. Our good friends are in the hospital with their son and we are adding that worry to our already full plate. Bertrand is our buddy and we don't know what we would do without him or his parents. They are constantly on my mind. It does make me grateful though for my personal beliefs and perspective on this life and the next. If there comes a day that I lose my child, I know that I will be able to find peace. As for Cole, he doesn't seem to be going anywhere anytime soon. I took him to the aquarium for an over stimulation test. He passed with flying colors! The place was packed and he only dropped once. It made me hopeful that we can start doing toddler appropriate activities again. With the diet and his glasses, I think we may even try the park this week. That is something that we have not done for over a year. Who knows? Maybe I can even risk taking him to the store with me for a little bit. I took him to church for an hour today because his dad is out of town, yet again. He did great. Played with the kids in nursery and did not fall once. I can't even remember the last time I took him to church to be honest.

So-in conclusion, things are looking up. It is still really hard. Cole is not getting proper nutrition by a long shot without taking his meds and eating entire meals. It's still a day by day thing right now and the dietitian has even told us that we will have to discontinue the diet if we can't find a way to get Cole to comply. Until we get compliance, or even cooperation-we will survive. I birthed a fighter, so we are good at that.