We had a good mix of fun and relaxation in Killarney this weekend. The trip out and back went well, and the visiting was a nice change from our everyday routine. We were spoiled with games and good food at my sisters farm, and we even had time to go visit my good friend Kathleen at her farm. You can see Hope and I in Kathleen's yard here...

Kathleen made two beautiful raggedy Anne dolls for the girls. Green for Hope and Purple for Ashley (they even match the girls' bedroom). What a precious gift. Thank you Kathleen.

Summer days

We've had some lovely summer days, and now we're hoping to have a nice weekend in Killarney at my sister's place. Hopefully it works out to travel tommorrow.

We had a good week. Hope is a little more alert with the decrease in clonazepam and it is so fun to see. Ashley is still smiling and Brodie is finishing up school.

Last Friday morning, after I had cancelled the contract with the respite worker, I felt a little depressed that I would be on my own for an unknown amount of time. God had a different plan. Friday night, I recieved an email from Miranda (#1 respite worker), saying that her trip is cancelled and would I have any shifts for her!!! Perfect. She was able to help us three days this week, and with two of those days booked for appointments we were very grateful. So, we've got a bit of help for the summer and then we'll be looking for someone to start in September when she leaves.

Small blessings bring great relief.

The BBQ

Very nice weather for a Father's Day BBQ. We ended up having the BBQ here in the city instead of at the farm, which meant a much easier day for us. It was great to visit on our front step, since we have no grass or deck to lounge on, and then enjoy the A/C for a game of cards in the afternoon. The girls did great, and Brodie ran away to play with the neighbors for a bit.

We had an appointment for Hope today with the neurologist. We are going to decrease her clonazepam to try to wake her up a bit even though the seizures are still an issue (she looks too dopey). We are also going to increase the Phenobarb to see if it will help control the seizures a little more.

I will also be looking for a new respite worker. It did not work out with the new person I was training, so I'll be looking for someone with Daytime availability again (about 20 hours per week). Let me know if anyone knows of someone who likes kids and would be interested in this job.

Thanks!

Happy Father's Day

I am often reminded how lucky I am to have such a great husband. If I had more eloquent words, I would go on, but I'll just end up sounding 'cheesy'. So, I'll leave it at this. Alex you are appreciated and loved. You are a wonderful father.

Happy Father's Day!

Not too exciting

Not too much to say here. Ashley and Hope came back from their weekend away on Monday and we're happy to have them home...

Brodie had his last soccer game yesterday, and was pleased to get a medal (just like everyone else on his team). Brodie is feeling much better, and we did not catch whatever he had. Yeah!

Tonight Ashley fell asleep on the couch at 6pm and here is Alex trying to carry her to bed without waking her up...

A loving father in action. Have a wonderful weekend everyone, and Happy Father's Day to any Father's who happen to read this.

Change of plans...

Hope and Ashley are still being pampered at their 'respite weekend'. You can see Calista and Brendon here in the photo with the girls. Calista does a great job of picking their clothes for the day.

Our weekend plans have changed a bit because Brodie is sick (fever, runny nose, cough...hmmmm). Same symptoms as some others in his class. Anyway, we're keeping him home instead of sending him for his sleep-over and we're enjoying a family movie night. It's fortunate that the girls are gone while he's at his most contagious. Hope we don't get sick.

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!