Doing well

We've had some nice days, the sun is shining and Hope doesn't cry quite as much. She still cries most evenings for about an hour, but this is hardly anything compared to the last four months.

Brodie is having fun with a friend tonight, we decided to invite a friend for a sleep-over. It's fun to give Brodie some playtime.

Nothing too exciting, which is a good thing.

Have a joyful weekend!

Better

Just a nice lazy moment after school. Just picture me sitting beside Ashley and that's what you would see if you were here after Brodie gets home from school.

Hope had another good day yesterday, with no crying. It has been decided that we will leave her Gabapentin as is, and not worry about poking her for bloodwork right now. This morning we saw Occupational Therapy and Physio Therapy, which is always an enjoyable appointment for us. They told us how good the girls are doing. It looks like Ashley has grown so much that we are going to have to get her stander 'refitted' soon (we've adjusted here as much as we can to accomodate her height increase). The plan for Hope is a neck collar, so that she can breath when she's in her feeding chair or car seat. Right now she doesn't have enough strength to hold her head up (or protect her airway), and that's why she starts 'foaming' and gasping whenever she's in these seats. We hardly ever take her anywhere, and we've stopped using the feeding chair because she looked so uncomfortable. So a collar will give her neck the support it needs to hold her head off her shoulders and keep her airway open...Bonus!!!

Swelling

The good news is that Hope is doing great and hardly crying at all for the past week (the gabapentin is helping). The bad news is that the gabapentin is causing so much swelling that the neurologist want to decrease the gabapentin. I'm not impressed. I'm hoping to get the doctor to actually see Hope before the decision is made to decrease the gabapentin.

The only reason they know she is this swollen is because we were unable to get bloodwork last week (three different people tried = 7 pokes) to monitor the clonazepam level. I just wanted to know if we really needed to keep poking her, and now they want to take away the one thing that is making life bearable. I'll need to be convinced.

Family day

What a great day. Alex returned home yesterday after a two week work trip. So we had a nice lazy day...church, brunch, naps and skating with Brodie. It was great. Ashley liked her nap so much, she didn't want to wake up. Hope didn't cry today, just a little bit of whimpering that seemed to resolve with cuddles. Yippee.

Te He...

There are a lot more giggles around here with Hope crying less. The last few days have been wonderful, with less than an hour of crying each day. Today of course, Hope had to remind us not to get our hopes up too high...she cried from 2pm - 8pm.

But I don't feel weighed down with the crying today, just happy to have had some nice days with the kids. Best of all, Alex comes home tommorrow.

Happy Hope?

This is a photo of Hope from October that I just love (I know I've posted it before but here it is again). I pull it up every time I need to smile, so I thought I would share it.

I shouldn't even hope for this but it appears that the gabapentin is having some positive effect on Hope. She didn't cry yesterday at all, and today she only started crying around 7pm. We even heard some happy coo's today. She still has oodles of seizures. While holding her during an appointment this afternoon, I could feel the almost constant seizures gripping her body. It becomes more obvious when you hold her because you can feel the changes and the jerks and see the eye flicking. She still vomitts every now and then...just to keep me on my toes. But I am so happy to see some days with very little crying.

Brodie is recovering from his little flu and hopefully the girls stay healthy.

Home

"Yeah, Mommy's home", says Ashley. I had a nice weekend with Alex, and it's great to be home. I got home late last night after the kids were in bed. I got a quick re-entry into the 'normal' around here when I woke up at 0430 to find Brodie puking at my bedside. Poor kid...he's sick again. Ashley's moaning a lot and appears to have some stomach pains. Hope started crying at 3pm and kept it up till 7pm.

What can you do? Just 'smile and nod' I suppose....it is, what it is.