Friday, July 3, 2009

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.

16 comments:

Emily said...

Oh... I just love Jaxson! What a sweet brother he has too! I hope you guys have a fantastic 4th and pray that Boston will get back to you soon!

Junior said...

the pic of Jax and his brother is just too cute.
Have a great 4th

Rioux Family said...

Park City was booked? I totally forgot about it and haven't talked to Sonnie yet.

The VW's said...

You just made my day with Jaxson pictures!! He is the cutest little guy ever!

I pray that you hear something soon from Boston and I pray that they say that they can so something...soon! I hope that his seizures won't get any worse either! Poor little man!

Hope you guys enjoy your weekend! HUGS!!!

Michelle said...

You guys have a fabulous 4th too!! I love that last picture of Jax pulling his canulas into his mouth...Preslie does that all the time...so funny!
I am getting anxious for our lives to move forward too but I have a feeling this move and career change is going to a process and not happen overnight...but I have been on the internet a lot looking at houses in Cali and then I get to anxious and have to stop! :) One day, one day soon my friend!

The House of Garcia said...

awwww so sweet the two of them sharing time together :) Hope yall have a great july 4th. Stop by soon and say hello :)
Huggles and slobbers!

Heather said...
This comment has been removed by the author.
Heather said...

Oh I love that stretch!I know just what your talking about.I wish you would hurry up and hear from Boston.I so want that little guy to get to feeling better, so you and Ray can get to feeling better too.Thinking of you and praying for you as always.

rebecca said...

Wonderful photos of your adorable boy. Thank you for sharing them.

Zachery&Allie*Mommy said...

I have to tell you everytime I check your page to see how Jaxson is doing it makes me want to just squeeze him..he is the cutest little boy, I've said it several time he just remind me of Zach so much, I have a sister who is 5 and she does the same thing with my kids, she gets a pillow and blankets and scoots them over to her covers them up and lays, most of the time they take off, but she just wants them to stay right there.

ParkerMama said...

Yay! I saw the title of your post and loved it!

I hope it continues all weekend long.

Give those boys a hug from me, k?

Tammy and Parker
www.prayingforparker.com
www.5minutesforspecialneeds.com
@ParkerMama on Twitter

Alison said...

That's a gorgeous pic of your boys! I hope you get some answers from Boston soon.

stephanie said...

Hi Lacey, Have a great 4th! Hope you here from Boston soon. Beautiful pic of the boys.

stephanie said...

Lacey, is it ok if I had your fund raising button to my blog?

Kim said...

Jax looks so alert and happy! I love the picture of him and his big brother too cute! Have a happy fourth!

Loren Stow said...

Happy 4th of July!
I hope everything is going well and that Jax is being a superstar (I'm sure he is!!).