Thanks...

Thank you for all the wonderful birthday wishes and encouragement. It has been a good day, full of wonderful phone calls, and time with friends.

Hope is not improving yet. She continues to vomitt frequently, has not kept anything down that we can tell, and is having quite a few seizures. She has had brief eye open moments today, but nothing that you could call 'awake'. She hasn't had a wet diaper since the first one this morning.

We'll see what tommorrow brings.

Happy Birthday to me

It's my birthday, so I got to sleep in this morning. Here is my 'morning face' with my two happy kids who were able to sit with me while I opened presents (Hope is still sick). I've had a fun morning on the phone, drinking my starbucks that Alex was kind enough to get for me.

Hope is having a hard morning. Vomitting every 15 minutes this morning, and now settled down to every 30-40 minutes. Unfortunately, her meds are not staying down, and she's puking up brown stuff which is looking like old blood. She's pretty sick. If she starts puking up bright red blood, we'll take her in to ER. She hasn't opened her eyes since yesterday around 6pm. It's probably good that she's 'resting'. Hope she gets better soon.

Sick baby

Hope is sick today. She's been vomitting since 3pm, with quite a few seizures and some horrible stomach heaving. She's pretty wiped out right now, hopefully she gets a good rest.

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.