Bad evenings...Good Mornings.

Hope is still having her little episodes every evening (multiple seizures with crying/screaming in between). The increases in Midazolam and Clonazepam have been useless. But I'll worry about that later, right now we're getting ready for pre-admit clinic tommorrow and surgery on Thursday (for her feeding tube). I don't remember the last time she was able to take a bottle, and she tries to suck on the soother, but usually doesn't have much luck with that either. I just realized when I was trying to take this photo that I don't remember the last time I saw her big smiles either. But then again, my memory is very, very poor these days. I only know what's going on today...it works for me.

So the mornings are good and the evenings are not so great. Ashley still surprises us with lovely smiles, and moans when she wants to be cuddled. Brodie won't let me talk about him on the blog, so I won't say anything at all about patches or glasses!

Have a great day everyone!

Uneventful...

We had a lovely, uneventful day at home. We enjoyed having Alex home, and didn't even mind watching football all day! Hope had a good evening last evening (no crying) and so far this evening, she's full of happy coo's. Nice to hear.

Happy girls

I like this photo, it looks like the girls are having a conversation.

The girls had a good day today so far. It's only 6:20p.m., so the interesting part of the night is yet to come. But for now we're enjoying some smiles and cuddles. Looking forward to having Alex home tommorrow.

Hugs

Here's Brodie, surprising Ashley with a hug. He wore his glasses on and off today, not to school, because there was no school today (good thing to be aware of!). The first time he tried the patch, was a traumatic experience. He wanted more computer time and agreed to wear his patch and glasses to get it. Once he was all set up, he looked at the computer, then looked back at me with the saddest, pleading look and said, "But Mommy, I can't see!". It broke my heart. My initial thought...I am NOT doing this to him!!!

The conversation that followed was so sad. I think it was a real shock to him that he can hardly see out of that eye, and even worse that he's expected to rely on that limited vision for a good part of the day. I still don't agree with this therapy. Why does he need two eyes anyway, he's perfectly fine with one.

Now that I've ranted a bit. Ashley was smiley and cuddley today. Hope was great until about 7:30pm, then she started her crying/screaming/seizing part of the day. Completely, inconsolable, she settled around 9pm.

It can feel a little hopeless when one can not do anything for their child.

Crying

When Hope starts crying in the evening, there is just no stopping her. I think I just need to give up on trying to console her, it's impossible. She was having so many seizures, and crying so much, I decided to try the midazolam again. Did it help? NO! Not only did it not help with the seizures, she didn't even get drowsy. She just kept on screaming for another hour. Eventually, she started calming down on her own, and now (at 10pm), I can hear her in her bed making little 'ahhwooo' noises, that sound suspiciously happy. Interesting.

As you see in the photo above, we had a day in the vehicle, going to appointments. Brodie and I picked up our new glasses, and Brodie did very well. He didn't fuss at all about wearing them, but he won't let me take a picture yet. He's going to wear them to school tommorrow, at least that's what we discussed and planned. I'll be surprised if he actually leaves the house with them on his face. It worked out rather well that my glasses broke last week, and I was choosing new glasses at the same time as him. Now he thinks it's a competition to see who is cuter! He is, of course.

You can see Ashley in this photo, all bundled up in a fantastic snowsuit that was made for her. It was made nice and warm, with zippers down both legs, and a blanket to go with it. We have so much trouble keeping her warm, this is just perfect. Thank you so much to Sheila in Haywood, you have blessed us.

4 days to go...

Four more days until Alex gets home. We're fine of course, just a little tired. I think I'll make my 'To Do' list shorter for the next couple days. Tommorrow we pick up Brodie's new eye glasses and start with the patches. We also take Hope to see Dr. Connor for the pre-op check-up. Only five appointments this week (not including my three appointments)... not bad.

Hope was a little 'out-of-it' today, but generally fine. No vomitting, but completely unable to take a bottle, and still having multiple seizures. We did hear some wonderful 'coos' when we were at the chiropractor today.

Brodie had a treat and was able to go watch Aunty Deanna's soccor game. I love it when he gets some entertainment out of the house.

Ashley had a beautiful day, with wonderful smiles. She is doing very well right now.

Happy Dance

Brodie finally gave me permission to post this video. He loves dancing around the house to whatever music we have chosen for that day. This time he helped Ashley dance too. You'll see her in her "Stander" which was made for her at RCC (Rehab Centre for Children - our favorite place). The 'stander' helps with bone density(wouldn't it be awful if her leg broke while I was trying to yank her pants on???!!!) and helps her hip joints so that she isn't at risk for hip dislocation.

It was good that we got an early start to the day because Hope decided to start 'upchucking' her stomach contents again. She's coughing today, and crying a bit with teething. Poor thing had a rough day. Too many seizures to count.