New Toy

Ashley and Hope saw the Physiotherapist and Occupational Therapist today. They past inspection of course, and then we got to play with a new toy for Ashley.

It's a switch toy. You can see it on her tray in the photo, linked to the tape player on the piano. Whenever her hand rests on the yellow pad (switch), it vibrates to let her know she is touching something and then the music comes on.

It also has a little microphone attached to it. Everytime Ashley sets off the music, Brodie runs over to her and grabs the mic and starts singing. Kind of annoying (the radio has a chipmunk setting, so Brodie sings into the mic and sounds like a chipmunk), but mostly cute! This toy is on loan to us, so we'll look into finding one if Ashley likes it.

Have a great day.

Sitting tall...

Here's Ashley sitting tall at the table with the rest of us in the morning. She is so full of smiles, what a joy.

Finally it warmed up a bit. Alex, Brodie and I enjoyed the warm weather by going out into the hot-tub. Brodie had fun with all his bath toys. Next time we'll bring Ashley in and see how she likes it.

Hope is still crying. She starts around 1:30pm with clusters of seizures which leave her sobbing, then more spasms which get her crying, and then the intensity increases until she is full out crying and completely inconsolable. The last couple days, she has calmed down by 6pm, but doesn't fall asleep till about 8pm. At least she's still getting sleep at night. Although we're not too sure how much sleep, because we keep finding her in the midst of full body tremors, twitches and jerks when we go to get her up in the morning.

Smiles

Ashley has been having big smiles all morning. While Ashley was in the bean bag, I placed Hope in her arms, and then 'Wow', the smiles were constant. So cute.

Nice day

Brodie is off to school with the gingerbread baby puppet. He brought it home from school, along with the book that each kindergarten kid writes in to say what the gingerbread baby did at their house. He wrote in the book and drew a picture of him playing hockey with the puppet.

We're having a nice day so far. My friend, Michelle came over for coffee with her little guy, Ethan. Brodie and Ethan played hard, and we cuddled the girls, which made a very nice morning.

So far, no change for Hope, she still cries every day starting around 3pm and ending by 9pm. Alex thinks we'll get used to it and won't even notice the crying soon. People will come over and say, "Aren't you going to do anything about your crying baby?", and we'll be surprised, "Oh, she's crying? I stopped noticing that about a month ago!".

It will take nine days before the Gabapentin is up to the full dose, and then we'll wait to see if there is any change for Hope. I'm not looking for any changes before that.

Back to normal...

The girls are back home after their fun-time away with our respite friends. Ashley came in the door with smiles and the cutest pigtails, all braided with matching hair 'bobs'. Hope came in with seizures and a look on her face that said, 'just wait for it...'. Hope actually settled quickly this evening and went to sleep, but reports of frequent crying did come home with her.

Brodie quickly updated the girls on the events over the weekend, and helped them by injecting "ooohs and ahhhs" in his 'little girl' voice, at all the right moments.

It was great to have a break. Now that Hope is back home, it looks like we're going to try some Gabapentin, as suggested by Palliative Care and Neurology. It's a medication for 'neurological pain', and it did help Ashley a LOT. We'll see what it does for Hope.

No rest...

No rest for us. Brodie was up puking on and off till about 0530. I'm thinking that it's a good thing the girls are not here right now.

Bye Bye...

This is Hope all wrapped up tight. We try to wrap her arms at her side to stop the seizures from jerking her with so much force. It sometimes calms her down.

We're having a free weekend. As of 6pm today, both girls went for a 'sleep-over' and won't be back till Tuesday. It's a respite weekend for us, and the timing is perfect. Hope's crying has become so overwhelming that I'm unable to make decisions lately (too depressed). It will be good to not worry about how to make her comfortable for a few days. The girls go to a family here in the city who take excellent care of them. They get cuddles and fun hair do's. The husband and wife are both nurses, which puts us at ease in regards to their care.

Alex returned today and we enjoyed some pizza and games with Brodie. Brodie might go for a 'sleep-over' tommorrow night, and leave us with an empty house. Imagine that!?!

The Palliative Care Team was at our house today to discuss options for Hope, and made me feel so much better. So, nice to have someone advocating for us and searching out answers. Hope's crying is definitely related to lack of sleep and seizures. She can't sleep because the seizures get worse when she is sleepy, and then she cries. Such sorrowful sobbing, and stronger cries when the seizures grab her body. The seizures get stronger as the evening progresses and she cries harder. She eventually falls asleep for the night and I think this is why the mornings are good, because she is rested.

As I'm typing this, Brodie has come to me and states that he is going to throw up! Better go...