Saturday, April 26, 2008

CNN's Broken Government ~ Healthcare ~ Critical Condition

I got a call from CNN earlier this week to let us know they will be re~airing the special on healthcare.

It will be aired tonight and tomorrow night 5, 8 & 11pm and 3am our time. The entire show is eye opening ~ I wish all our politicians would watch it!

In case you miss it, here is a 7 minute clip ~ starting with our friends from Las Vegas (who are filing for bankruptcy after losing their 18 month old baby girl) and then we come on at the 5:22 mark.

Get our your tissues, the Zeigler's story is incredibly sad.

Thursday, April 24, 2008

Matthew on a swing up in Beaver ~ he was loving it!
We were just toodling around the cabin.
While everyone was "being a rock star" playing Rock Band on PlayStation, Matthew crashed in this most uncomfortable position.

Thursday, April 17, 2008

Casey having his heart procedure today

Update: I just got home ... it's 4:15pm. Well, the surgeon was not able to get the results he wanted. He and another surgeon spent 2 1/2 hours working on him. That's all I know for now. We are disappointed. It sounded to me as if this is just something he'll just live with. Before the surgery, he did say the node was in a tricky spot. When the nurse came out after an hour and a half, she said "it" was being a "real booger". Will know more later. Casey is doing fine, just nauseated ~ poor kid.
Today at 9am, Casey is having an ablation. This is a procedure that can be done via catheter in the cath lab.

This is going to be a re~do from a previous attempt in December.

Please say a little prayer that all goes well.

Friday, April 11, 2008

ECHO results

Dr. Mayman figuring out Matthew's leak "numbers". It's rated a 2 now ~ which is kind of crazy because during his last ECHO it was a 3 and the time before that was a 4.
So, we got great news today!
(Sidebar: Once it gets to an 8 we need to talk about surgery and a 10 means surgery time.)
Waiting for the ECHO.
Strapped up "halter monitor"... it's a little EKG machine he needs to wear for 24 continuous hours. He has little stickies all over his chest. This should be interesting!

Getting ready to listen to his own heart at Dr. Nakamura's. Dr. Craig gave him his own kiddie stethoscope.
Matthew's ECHO results could not have been better!!
Dr. Mayman said that it could be anywhere from 5 to 10 years before his next surgery! WAH HOO!!

Thursday, April 10, 2008

Just reading a book on the drive home from Beaver.
Talk about stopping til you drop. This was last night after we got home from Beaver.

This was in Beaver, he was so tired he fell asleep on the kitchen seat. Before he passed out, he was chasing after mom w/ his eyes closed.

Saturday, April 05, 2008

News Flash!!!!

Out of the clear blue ... Matthew started singing ...

"twinko ... twinko ... litto ... tar!!" I almost passed out *big eyes* ... but first, I had to acknowledge that I knew what he was singing .... so I started singing it with him again. (He's never even SAID twinkle, little or star.)

I raced to the phone to call Mike ... he was able to hear him two more times...

Wow.. I am in shock.... it was SOOOO great!!!!!!!!!!!!!!!!!!!!!!!

I of course had to call his speech/feeding therapist Shay, to let her know .... she's a big part of why he's doing so well. Actually, all the girls from Nevada Early Intervention are the greatest and have worked wonders w/ Magoo .... Christy and Erin, too. We love them all. Kristina and Shirley have been a part of Matthew's care too, but are no longer his little helpers ~ thankfully we stay in touch. His services will end on his birthday, we will be so sad... these girls have been such a huge help to me and Matthew over the past 2 1/2 years.


okay, enjoy the pics I posted below.....
Ethan and Matthew painting w/ cool whip. Ethan loved eating it.. Matthew wanted no part of tasting it.. shocker! This is Erin of NEIS at the table, she and Christy were the "play masters".
I know it's kind of dark, but it's so cute. If you look to the left, you can see Matthew's back in the striped shirt.. trying to make a getaway. You can see our friend Trish at the table.
Wearing daddy's baseball cap.
Just checking out how it looks in the mirror. His t~shirt is so cute, it says, "That's it, I'm going to Grandma's". His Grandma Sue got it for him.

All is fine around here. I know we've been lame about keep up the blog.

We had a fun little playgroup yesterday w/ the Nevada Early Intervention Team and little Ethan, he's almost 3. We're getting Matthew used to being around other kids ~ healthy kids of course.
This was our third playgroup and it was quite fun and funny! Trish is wonderful for driving clear across town so Matthew can play with him during these supervised visits.

We'll go see Dr. Mayman (pediatric cardiologist) next Friday for his six month ECHO. As always, I get SO NERVOUS about those visits.

We also go see Dr. Nakamura next Thursday for a check up on the ole lungs.

Casey will be having ANOTHER ablation (cath) surgery on his heart on the 18th, not sure what time though. Hopefully he'll have better luck w/ no IV fluid dripping on the equipment cables.

Off to Beaver for a few days! We're excited about going, Matthew and I haven't been up in two months. Mom and LeRoy are going up w/ the motorhome tomorrow. It's always a good time in Beaver.