Smiley Ashley

Ashley is full of smiles today. Hope is still 'dopey' and Brodie is bouncing off the walls. It's a great day.

We're off to Rehab for Children tonight for a Wine and Cheese, which is being held for the people who donate money to the foundation. We've been asked to attend to represent families at RCC and say a little about our experience there. We'll also get a chance to thank the Beaver Trucking Company for donating money which enabled Ashley to get her Kidkart (wheelchair). Should be fun.

Nice and Quiet

Things are nice and quiet here. I was able to work a couple shifts at the hospital this week, which was great for me. The kids are doing fine. Ashley is demanding a lot of attention these days, and it's fun to see her wanting to be held. Hope is just 'dopey' looking and still having countless seizures. This is her 'normal'. So, things are pretty stable and not too interesting.

With all our 'helpers' graduating, we're looking for new respite help. So, if you know anyone looking for a part-time job with flexible hours, let us know. We're especially needing someone for Wednesday evenings from May to the end of August. No experience needed, our respite workers get trained on the job ($14/hr). Just leave a comment on the blog with an email address or phone number.

Thanks everyone,

Jolene

New Lift

The wheelchair lift was installed in our garage last week, and we've used it every day. What a handy thing (especially for my back and shoulders). I would say that Brodie likes it the best. He uses it every opportunity he gets.

Tuesday

We enjoyed a full weekend of visiting and eating (We made it to the Allen Farm for Easter). It was our first trip out of the city since Christmas and Hope did very well. The Atropine drops worked. Yeah!

With the decrease in Clonazepam, we are seeing a few more 'bright' moments with Hope. In other words, we see very brief moments where she opens her eyes fully, and almost smiles and sometimes coo's. It's not much, but it's still cute. Unfortunately, we're also seeing more seizures. It's a balancing act.

Alex comes home

This morning we got dressed early to go to the airport and pick up Alex before going to Church for the Good Friday service. Brodie got a chance to play a bit before Alex arrived and I enjoyed cuddling the girls. Alex is happy to be home.

Mom, thank you so much for the dresses for the girls. I had no idea how much fun I would have dressing them up. They are a perfect fit and will be worn all weekend and as many times this summer as I can manage.

Hope didn't open her eyes for her photo shoot. Ashley just sat there calmly, waiting for me to get it over with!

Have a wonderful Easter weekend everyone!

Brodie's Journal

While Brodie was at Grandma and Grandpa Neufeld's, he made a journal of all the fun things he did. He was excited to show all of us, the photo's and pictures he drew. But my favorite, was when I walked in to see him reading to Hope about his fun time in Killarney.

The girls are doing well enough. Hope saw the Neurologist today, who agreed that she is looking rather 'doped up'. So, we are decreasing the Clonazepam even though her seizures are not anywhere close to controlled. She's still having 5-7 minute clusters of seizures every hour. We're also increasing the Gabapentin some more, because she's still crying in the evenings (only for about an hour, which isn't too bad at all). Another change is that we'll start giving her Melatonin at bedtime, to help her fall asleep. It's rare to see her fall asleep before 10pm, but tonight after I gave the Melatonin, she was asleep in 30 minutes (we'll see if this actually continues or not).

We're loving the cuddles from Hope and the smiles from Ashley. Best part of today? Brodie walked in the door after school and announced, "Quick Mom, get my bike, I have to go to Avery's for the Hot Chocolate stand...no really, I can go by myself." Yeah, right. Luckily, I had Miranda, so we 'grabbed' our bikes and went for a 20 minute bike ride to buy a 1 minute hot chocolate!

I've been trying to post a video of Brodie, that he wanted to share. But the computer/internet won't cooperate. So, I'll show you Hope instead. She was so sleepy on Sunday morning, that she looked like this even after I washed her face, scrubbed her teeth, and changed her diaper!

We had an uneventful weekend, and we are sooooo looking forward to Alex coming home on Friday.

Brodie's eye appointment

Brodie's eye appointment went very well. His eye has improved to the 20/50 level with the glasses (it started out at 20/200 with a strong lens). The goal is 20/40 and that is only one line away, so he's done fantastic. The plan is to keep using the patch "as much as possible" in the next few months, to get as much progress as we can before Grade 1 starts. I got the impression that they didn't think 25 hours a week was enough. So, hopefully we'll meet (or even exceed) the goal by September/09 and be done with the patch. He still doesn't have 'binocliar' vision, which means he doesn't use both eyes together and has no depth perception, but that could still come.

Brodie's Home

I'm so happy to have Brodie home, his hugs are the best. He's hugged and cuddled the girls and updated me on all the fun he had at Grandma and Grandpa Neufeld's.

Tommorrow we go to Brodie's eye appointment. The first one since January. It will be good to know if he's made any progress with all the patch wearing. He wears his patch for 25 hours per week, and his glasses all the time. For those of you who don't recall, we are trying to strengthen his right eye which had very little sight due to the strength of the Left eye (the left eye was strong, so it stole most of the neurons in his brain - plan: cover up the strong eye, so the weak eye has to work, thereby stealing back some neurons.).