Wednesday, March 9, 2011


We had our appointment with the metabolic doctor yesterday. Apparently our neurologist was over exaggerating a little when she was giving us the vague details of what was going on. One of the tests they were running came back with  a barely high result. The cutoff was .13 and his result was .14. So he was just a smidge above what is considered normal. None the less, they have to run about a gazillion more blood tests to rule out other metabolic things. He had another blood draw and more urine tests, 5 of which were more genetic tests. We are waiting on the result of just one of them, and if it comes out normal he can still do the diet! (Like I said, the neuro scared us for basically no reason....) So the next initiation date for the diet is March 27th, about 2.5 weeks away. If the test comes back normal he is good to go for that date! Now, once again, the problem is these genetic tests take about 4 to 6 weeks to complete. This is a complete DNA sequence so getting this rushed is going to be hard, but they are already on top of trying to push it through so we'll see I guess....
That much Valium would make me pass out too.

It was heartbreaking being in the hospital yesterday. Ethan should have been admitted on Sunday to start the diet. He should have been on day 3, up on the eighth floor just starting to be introduced to foods. He could have even been having some seizure relief by this time. But he wasn't. Instead, it was noon and we were already up above 35 seizures for the day. He was passed out in a wagon while we were eating lunch because the second he would come out of one seizure he would go right back into another. We had to give him Diastat in the doctors office because he wouldn't stop seizing. I hate having to give him that, not to mention the more he has it the more he gets used to it. As if 13 (now 14, added another yesterday....) pills a day wasn't enough for a 3 year old, he's getting dosed with massive amounts of Valium every few days to stop his seizures from spiraling (more?) out of control. Sure, the stuff stops them right now, but what is it doing to his little body? What is the effect of all these drugs going to be in 5 years? Prescription drugs are no more safe than street drugs, they're just more controlled, and half these drugs aren't FDA approved for children anyway. He's regressing more, and it's becoming harder and harder to understand his speech every day. Poor boy:(

An adult would have a hard time with this many pills.
 On a semi-separate note, you may have seen the donate button on the side about getting Ethan a seizure alert dog. Some amazing family members have donated already, no questions asked because they love Ethan and need no explanation! (Thanks Grandma and Grandpa and Uncle Jim and Aunt Nina!!!) I haven't yet explained what a seizure alert dog is, and what my plan is. A seizure alert dog is a service dog specially trained to help people with epilepsy. They may (or may not at first) be able to sense a seizure coming on and will alert that person and their family so they can be in a safe place and prepare for the seizure. They also stay with the person during and after the seizure to provide comfort and stability. They can also be trained to perform certain tasks for the person with epilepsy much as another service dog can do. There are many organizations out there that train these dogs and place them with people, however these dogs cost between 10 and 20 thousand dollars. Even with grants and donations they can be very difficult to obtain, and the waiting list is long.

People who know me know I know dogs..... Very much inside and out. I have been training dogs since I was young, and have even trained a service dog. I have as much, if not more knowledge than many of the people working for the organizations and I have decided to take on the task of training a dog for Ethan. The search for the right puppy will be a long one. The breed doesn't matter so much as the temperament and size of the dog. I know how to temperament test puppies, and can tell you what a 6 or 8 week old puppy will be like as an adult, as well as their trainability and intelligence. Once we think we are at a place where we will be home for a while and Ethan hopefully won't be in and out of the hospital for a while will probably be a good time to bring a puppy in. We will give the dog minimal attention, and have it spend the majority of its time with Ethan in hopes of them forming an extremely close bond and hopefully the dog being so in tune with him that it will be able to detect the chemical changes and alert his seizures. If that doesn't happen even for a few years, the dog will still provide him with a helpful companion that can assist before and after seizures. I will be in charge of training, and am confident that I can get the job done! I am looking for donations to help out with the process. I figure the initial costs of a puppy will be in the $500-$700 range including the puppy, supplies, and a spay or neuter. Thanks to initial donations we are already half way there! This would normally not be a problem for our family, but with the added 5 to 6 hundred dollars a month in medical bills, things like this are less obtainable for this:) Even a small donation of a couple dollars is helpful if you could manage. This dog would just give Ethan back so much of what he has lost.

I must add, we already have a dog, an amazing mutt that Mike and I rescued about 6 years ago. He is an extremely well behaved and lovely dog, but unfortunately he really doesn't care for the kids. He basically just leaves them alone, and won't interact with them at all. He tolerates them, but that's about the end of it. He bonded with the adults in his life early, and only wants attention from us. Plus he's getting older, and is stuck in his ways. We love him anyway though, but he's just not right as a service dog! But the kids still love him!
Our Buddy!

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