Weekend Fun...

We spent the morning packing up the girls to send them to their weekend away with the Respite couple. So we get a weekend to have fun with Brodie. When I walked into the kitchen this morning, it was very cute to see Brodie munching his apple while he casually held Ashley's hand.

Hope didn't want to wake up for the preparations, but we did get a nice 'almost' smile before we left.

Ashley was very smiley and didn't seem to mind that she's going for a 'sleep-over'.

Have a wonderful, sunshiney weekend everyone.

Cuddle time...

Brodie reminded me that he wanted cuddle time with the girls today, so we made it happen. He even read Ashley a story. Hope's drooling has moderately improved with the glycopyrolate, but increases dramatically with her clusters of seizures which last anywhere from 5 minutes to an hour, and occur about 6 - 10 times per day. She's still pretty 'out of it', but we often see her 'thinking of smiling', as you see in the photo above.

Tonight we have respite booked, so both Alex and I will be able to enjoy Brodie's soccer game (hopefully not in the rain!).

Still drooling...

Hope continues to drool like a champion. Her secretions are a huge problem whenever we try to sit her up or take her anywhere. She just coughs and sputters, and then her chest gets rattly and gurgly. The Atropine drops only help for about and hour and a half (instead of three hours), but it's still a good option. Today we started glycopyrolate to try to dry up the secretions all the time. Hope it helps.

Alex had a good day with the kids today, as I went to work (2nd shift this week). Brodie has been very cute, giving me very special hugs when I get home from work. So sweet.

One year ago...

Here is Hope, a year ago. I thought everyone could use this little bright spot to lighten the day. Amazing what a smile can do for us!

By ourselves

We had to say 'Good-bye' to Miranda yesterday, it was her last shift before she leaves. Today was a nice day on our own, but we'll miss her easy presence and giving nature.

I'll be training someone new on Monday. Luckily I still have Lauren helping us for the first couple weeks of June, otherwise I wouldn't be leaving the house much (training someone new takes time). Lauren has worked with the girls since Ashley was two years old, I think. It's hard to remember these things.

Anyway, the day is beautiful and the girls are doing well. What more could I ask for!

Thinking of smiling

When I say that Hope is 'thinking of smiling', this is what I see. She's definitely showing a bit more response, and very sweet little 'almost' smiles. The seizures continue and they tire her out, but we usually get a bit of this each day.

And more fun...

I hosted an Epicure party yesterday and the girls enjoyed A LOT of cuddles. Here you see Hope helping Aynsley decide what to order. Aynsley was the first nurse who helped us when we first started getting nursing respite, four years ago. She started here when Ashley was 6 months old.

Now we don't need nurses anymore, and Miranda is our main respite worker till the end of this month. In the photo below, you can see Miranda's family who always impress me with their interest in the girls (Miranda is on the far left). Ashley was full of smiles the whole day, just loving the cuddles.

Today it's raining and we're going to enjoy a quiet day inside.