Lotsa Treats

Halloween was a success in Brodie's opinion. He counted his treats today, and the total came to 140. Then he divided his treats into two piles. One for himself and one to give away. I was surprised that he was so generous, almost half his treats went into the pile to give away (I wanted to sneak some back into my own private stash, but I restrained myself).

His school sends the 'unwanted' treats to a local Dentist office, which then donates $2 per pound of candy to Unicef. I'm not sure what they do with all the candy, somebody said they might send it to a shelter in the city.

Hope had a lovely weekend. We saw some nice smiles and enjoyed some little coo's in between seizures. Her smiles are lopsided, her movements are very spastic and she has a strong right sided preference (head and eyes constantly to the right), but at least she's out of the 'comatose' phase that we were treated to last week. I hope she gets a little closer to her 'normal' self still.

Happy day

We had a very happy day with Hope today. She gave us so many smiles, and surprised us with some wonderful 'coos'. It's a first in many days.

Ashley is at the farm with Grandma Neufeld, having some fun. Brodie is a little jealous!

We visited two more doctors this week about Brodie's eyesight. The opinion is that his vision can be improved and we absolutely should try the treatment to see what benefit could be had. And Dr. Connor felt that we should bring Brodie to an opthamologist as well. So that's the plan. More appt's and start treatment in November. Hopefully, something amazing happens to make it possible for me to handle the increased workload.

Hopefully, Brodie will let me take take a photo of him tonight, and we'll share some Halloween fun with everyone.

Happy treat eating everyone!

Hanging Out

We're just hanging out tonight, watching a bit of news after supper. Hope hasn't had a great day. Ashley is doing well, and Brodie is enjoying school. Hope continues to have almost constant seizure activity, she only came out of it once to try and have a bottle. Other than that, we just feed her with the tube in her nose. We see Dr. Booth tommorrow (the neurologist).

On Friday we took Brodie to the eye doctor for the first time. We found out that he has minimal sight in his right eye, and that treatment would probably not help much. This news was rather hard to take, and we're still thinking about it. We have a couple extra appointments this week, to discuss treatment. We are seeing a second doctor for another opinion about the benefit of treatment. If treatment is not going to offer very much improvement, then doing nothing is a reasonable option. He has obviousely adjusted very well to life with one eye, because we did not suspect a problem.

Grab the camera

We grab the camera when we see smiles from Hope now. It's infrequent, but creates a beautiful moment of the day. Last evening was a rough one for Hope. She didn't stop seizing to drink her bottles like she normally does, so we went back to the NG and gave her some 'rescue meds'. She was vomitting a lot and looking a little blue at times. But she woke up hungry and drank her bottle before starting her seizure marathon for today. As you can see from the photo, she still has a bit of left sided paralysis, but it is slowly resolving.

Car rides are good

Here we are on the way to church this morning. It seems that Hope still likes the car motion. She stops crying and starts smiling as soon as we start driving. Just little soft smiles, but we still appreciate them.

Poor Hope

Poor Hope! She hardly gets a rest from the seizures. It's so sad to see her looking like this most of the day, mostly limp, with her head slightly tilted and drooling a bit. When her eyes are fixed to the right, she's seizing (as we discovered during the 5 hour EEG). She does this most of the day. Although she still manages to come out of it, to drink her bottles and tell us she's hungry. We see the shadow of a smile every now and then. I miss her real smiles and coo's, but enjoy the snuggles.

No change

Hope is still seizing but having cute little smiles in between. She frequently pulls out her NG and we try to leave it out as much as possible. She guzzles her bottles in the morning, has a good nap and then progressively gets worse throughout the evening (ie. more seizures, ineffective sucking and the occasional vomitting episode). We like the mornings.