Update

This has been a long week for many reasons...most of which are related to Hewitt! His side affects continued to get worse over the weekend. It was a hard weekend for us to watch him decline so rapidly developmentally. His speech was slurred, he was having a hard time walking, putting 5 words together, focusing on something, responding to us...it was depressing to say the least. We continue to think it's the 2nd med she has him on. (zonegran) and we continue to ask her to take him off of it.

We talked to her Tuesday morning and after telling her that his seizures increased over the weekend and all of the things we were concerned about she had us come down to Mary Bridge in Tacoma. She ordered an iv dose of a new medicine, called Depakote or Valproic Acid. Nothing makes you feel better than giving your 3 year old a med that has acid in the label. He cried as it went into the IV, he said it hurt. It was sad, but we were (and still are) hoping it would help. She agreed to at least cut the dose in half of the zonegran and continue to watch his progress. As of Tuesday, there hasn't been any progress. He left the hospital still having small seizures and they have increased all week. Unfortunately, the ones that continue to increase are the drops. He has had a lot of hard falls this week. Thankfully nothing broken. A knot on his forehead that seems to attract him to the floor, and a bloody nose this morning. Lots of falls on his bottom, which have been a blessing. Before this, he usually fell straight back or straight forward and he's been bending more with his falls for some reason.

At this point it is so hard to know what is the progression of the syndrome and what might be med related or meds just not working. One of the side effects of the zonegran is appetite suppression..we hadn't seen it until last weekend and now he's been having a hard time eating all week. When we took him in for the iv, they did blood work and found out he was dehydrated. So then we wonder if the weekend was so bad because he was dehydrated or if he was dehydrated because the weekend was so bad! This is all so frustrating and it's so easy to get sucked into the frustration and unfairness of it all.

He has an EEG scheduled for Monday at 7:30 in the morning. We have to keep him up 2 hours later than usual and wake him up 2 hours earlier than usual. This should be interesting. For all of us! I have this feeling he is seizing more than any of us know or see. Throughout the day if I am paying close attention - he doesn't usually go more than a couple minutes without something noticeable. I am curious what the EEG will find and what the Dr. will say about it. She will get the results on Monday and said she will call me Tuesday.

After the EEG on Monday, we have a fitting for a helmet scheduled for Thursday. This has been a hard one for Hayden and I to swallow. More than anything we just want Hewitt to feel like himself. We are thankful right now for his age and his lack of awareness of people's opinions of him. (for the most part) We are praying he will wear the helmet and that it will come quickly. His bike helmet is really bulky and from what I understand this helmet will be much lighter weight and easier to wear than a bike helmet. But, right now he can't even walk out on the cement without someone holding his hand. I will update again next week when we hear about the EEG. Thanks for your continued prayers.