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.).

Secretions

It appears that Hope's problem with the carseat is just secretions. Today I ventured out with the girls and tried the Atropine Drops that were prescribed by the Palliative Care doctor. The Atropine Drops go in her mouth and work to dry the oral secretions for about 3 hours.

So, I dressed up the girls, gave Hope her drops and went for lunch. Hope did great. No coughing, no drooping eyes, no bubbling sounds, no foaming/frothing and no rattly chest. I'll have to try it again for a longer trip, but it appears that this may be a solution. Yeah, for doctors who care enough to problem solve with me.

Ashley loved the outing, she smiled the entire time she was in her Aunty Deanna's arms. Very sweet.

Brodie just called me to tell me 'all the fun things he did today'. It sounds like he's having a great time. Alex called too and it sound like he's not having a great time.

I finished painting Ashley's room and now I'm going to take it easy. Ya, right!

Monday

This afternoon, the girls had to have their quiet time on the couch, because I decided to paint their room this morning. I don't know if that was the wisest decision because I can still feel my achy legs and didn't realize how high those ceilings were (10 feet and no ladder). You should have seen me, standing on the kitchen stool on my tippy toes. My legs are still shaky.




Hope was pretty mellow, since she only woke up from her night time sleep at noon (lucky her). Unfortunately, she was crying by 4pm. Her medicine for the Thrush is all done, but the Thrush is still there and now she's crying again (it's 8pm and she's still crying). I'll be talking to the doctor tommorrow.

Ashley was full of smiles this afternoon, very fun to cuddle and only started moaning around 6pm when she was ready for bed. She is in a very good routine.

Brodie is having fun with Grandma and Grandpa still. He was happy to get a tractor ride today as he and Grandpa did some snowblowing on the farm. Yesterday, he had a ride on the snowmobile. He's pretty happy the snow is still around.