coughing?

Well, Hope managed to cough once today and get up a bit of thick, yellow stuff. I was hoping to see a little more action, but she's still sleeping 90% of the time. She sleeps through her morning care and even getting dressed. She did open her eyes a few times today, but it never lasts long and then she has a seizure and goes back to sleep. It's a peaceful sleep and that's good.

Hope is sick again...

Look what happens when I limit the computer time!!! Brodie shows off his sensitive side and finds a book to read Ashley! I just love having him around.
We had oodles of appointments last week and it went great. We spent a day at Rehab for Children getting the girls weighed and reasessing their formula requirements. We also worked on AShley's kidkart and stander. Then we decided to have Hope measured for her stander, because I made the mistake of saying she's doing better. The next day, she threw up...

This past Sunday, we found her in a puddle of puke when we went to get her in the morning. She probably got some into her lungs, because she's been sleeping since then and her chest sounds horrible. Today is the first day that she's kept her eyes open for more than a few seconds and she's finally started coughing up some of the phlegm, but it leaves her exhausted and she goes back to sleep. So, I'm not too sure what direction she's heading, but we're having some quality cuddles just in case she doesn't get over this. She doesn't have a fever and she's not puking, so that's good.

Normal...

We're all back to normal after the round of birthday fun last week. Ashley is moaning a lot and not comfortable, so we're evaluating options. She's been more and more uncomfortable lately, and it's getting harder to calm her down. She still enjoys cuddles, most of the time. We think her seizures are waking her up at night because she seems tired all the time.
Hope had a hard week. She started another vomitting episode last Wednesday, spent 30 hours puking and stopped peeing for 48 hours, then the ganisitron started working (it's hard for it to help when she pukes it up immediately after giving it). But once she stopped throwing up, she eventually started peeing again, and the seizures calmed down. Today she is pretty much back to normal. These episodes happen about once a month.

Tommorrow we spend the day at Rehab for Children. Hopefully I'll remember my camera this time and have something to show you next week.

Thanks to everyone who has commented on the slideshow, I had fun making it.

Happy Birthday Ashley!

I'm not sure if I did this last year, so hopefully I'm not repeating myself. I've created a slideshow of Ashley's journey for you to see.

Make a Smilebox slideshow

Happy Birthday Brodie!

Yesterday we enjoyed a little gathering to celebrate Brodie and AShley's birthdays. Brodie turns 7 years old today. Happy Birthday Brodie!

Sitting up!

Yippee! Hope is sitting up and I'm sooo happy to see it. We increased the glycopyrolate again (which helps with secretions), and this time it helped (for now). It's so fun to have her sitting up in her little black recliner. We've been able to play with her more and hold her more which gets her very excited. She's making a lot of fun 'Hopey' noises and many cute little smiles. When she gets gurgly, we lay her down again, and sometimes we move her to the island so she's more involved.

You can see below, we had Hope and Ashley involved in Brodie's after school routine. It's nice for Brodie to read his books to them. Ashley is enjoying her KidKart more. The sheepskin helps a lot because she's so skinny and boney that she gets uncomfortable without it. We also adjusted the headpiece again (it keeps falling down) and she is much happier if she can see what's going on.

The school intake meeting went well and everything is set for Ashley to start school in the fall.

Everything remains fairly settled here. We're still enjoying a lot of appointments, and the girls seem to be doing about the same. Today we are taking Ashley to her school intake meeting, which will involve about 14 people. We will meet to discuss a plan for Ashley starting school next year. Goals, expectations, needs, support ect. Should be interesting.