A beautiful day

Good morning everyone. Its a beautiful day here today. I hope to get some yardwork done. I Love when Jax wakes up in the morning, he looks like a newborn when they stretch. I tried to catch it, I'll have to do a video, its so cute.I emailed my hemo doc to see if he's heard anything from Boston. My guess is he is out of town for the holiday, because he usually emails me back pretty quick. I'm getting anxious. Jax had a wierd seizure yesterday. It started out like a typical siezures, he jumped like someone startled him. Then his body went stiff, but then his right arm came straight up in the air like he was waving to someone. If you remember, Jax has about 50 siezures every day. And that is actually pretty good. He used to have hundreds. They've never been able to control them. But the SVC problem has made them worse. I wish they would hurry up with an answer. Maybe they are studying it really hard to see what they can do. I could dream right?
The other day Tanner had his pillow and blanket out, and he scooted Jax up on his pillow so he could watch TV with him. Too cute.

Jax on this pad, preparing for a flush. Its getting easier, though its still a messy job.

I have a bunch of blankies on their way, thanks to everyone's help. I'm just waiting for some pics. I have some exciting news. I'm going to start doing a rememberance blankie. I had a blankie request for a little boy who had just passed away. So I made a blankie, and I'm having his name, birth and death date embroiderd on it. I can't wait to show you a pic when its done.

Everyone have a safe and happy 4th. I don't know what we are doing. We usually go to Park City for the 4th, but our time share was booked. Dang..

So we'll probably go to the carnival, and find somewhere to watch the fireworks.

And say some prayers for little Aiden, who had heart surgery yesterday. And my little Libby, who had a HUGE heart surgery Wednsday. They opened up some major blood flow to both lungs, yeah. Their both doing good right now.