Beaver

Taking a little nappie on the drive to Beaver.

His new friend Marketta giving him a spin on the ATV.

Here's a cute picture of Matthew in Beaver with our neighbors HEALTHY kids ....
as you can see, he's not interested in eating one bit. The other kids were attacking their Mickey Mouse waffles... Sitting him at the table w/ other kids while they eat is a good thing though...
Someday he'll catch on and see how good food is!

I've got some great pics of him at the Beaver "kiddie" pool. Tanji had the great idea of taking the kids swimming ~ Taylor was a real champ and hung out with Matthew in the pool. Now that it's June and past the RSV season, we can relax a little bit about him getting anything that would affect his respiratory system. It's so nice to actually get out of the house!!!

We've been a little behind on updating blog b/c we've been going to Beaver 3 days out of the week to work on the cabin. If you want to see some recent cabin pics, click here. Mike is really working his tail off between the cabin and his new position as Sergeant.

Birthday pics and more

Sorry it's a little dark... too much backlighting.

Still not interested in eating cake and ice cream....maybe next year!!!!!!!

We had a family brunch. Matthew's NICU nurse, Jenny stopped by for the celebration.

Little stinker trying to get out!

Matthew LOVING the pool that Erin, Christy and Shay (from Nevada Early Intervention)bought him for his birthday. Isn't that the cutest pool. You can hook up a hose to giraffe and water comes out his mouth.

Some fun pics over the past couple days

Wearing my glasses.

He's a big boy at the counter... he loves sitting there.

Knawing on some string cheese... still doesn't "eat" .. but it's a start. Gets all gooey.... yum.

Packed up and ready to go in one of his birthday gifts. The girls from NEIS bought him a pool and a hand basket filled w/ tools. He was loving it.
My sister couldn't resist picking up the little magpie!!
Uh yah!! He is ALL INTO throwing stuff in the toilets. I panic when I hear it flush, I go rushing in to be sure nothing is going down!!

Can you believe it!!!

Matthew will be 3 this Saturday!!

We will be having a small family get together ~ Mike has to work that day, so we figured it would be easier this time around to keep it small.

We will also be celebrating Mike's birthday and Mother's Day :-)

Matthew's Grandma Sue is flying down from California to spend a few days with us.

We will be sure to post some pictures. He got a haircut the other day, and he always seem to look so much older after a haircut.

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.

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.

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.

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!!

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.

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.

*DEEP BREATH*

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.

Mike reads to Matthew every night that he's home. This is a favorite time!!

Our little "cool Joe".

Colin and his family could use your prayers right now

On Valentines Day, I had requested prayers for baby Colin (he has same defect as Matthew) ~
he was having his second open heart surgery that day in Boston.

He isn't doing very well.

Mel and Tim are requesting prayers for their little Colin. Here is his site if you would like to go leave an uplifting comment. We sure loved comments when we were in the hospital with Magoo.

Thank you so much, WE KNOW THE POWER OF PRAYER! Matthew is proof. My heart aches for the family...we know how hard this is on them.

My Everything

Isn't this a precious picture? Terri sent this to my cel phone while I was at work Tuesday. I was showing it to the other sergeant I was riding with. I told him, "There is my everything."

Shower boy

Getting a Mohawk from Daddy.

*giggling* He looks so cute in the shower. He's been taking showers instead of baths lately. It's better for his skin to not be sitting in water (he has a form of eczema w/ a crazy name).

Isn't this the cutest towel ever! His Uncle Joel gave it to him! Thanks Joel.. we love it!

I crack up everytime I get this towel out.

The wife of a friend on Mike's squad, gave Matthew this fun carpet w/ some diapered wooden animals. We love it ... it's a big hit ~ Thanks Joy and Wes!!

After one solid month of not eating/tasting a thing by mouth ~ yesterday I got him to taste (not so much eat, but it's a start) some chopped up grapes, apples and a teeny tiny peanut butter sandwich. I've been having a bit of luck with the white string cheese.

All of that did end up on the floor ... guess he was done! Oh yes, I do see some Cheerios too. He will taste those.

A "glitchless" version of our CNN interview

This is the "Broken Government ~ Healthcare ~ Critical Condition" special that CNN aired a few times. I wish there was a way to get our politicians to watch this ~ they need to see what is happening in the "real world".

The Zeigler's are up first, then we come on at the 5:25 mark til the end.

Quick update

Matthew is beginning to feel better. His retching is under control now, too. That was a real problem this time around. He retched non stop for a couple weeks and it was quite miserable for him. (us, too... that is never fun to watch)

He had a great day today. Still a little junky in the lungs, but we are working on that by extra inhaler treatments that contain steroids, percussion treatments and manual chest manipulations. He loves the chest manipulations, he just lays there and let me do my thing. He usually starts giggling. We are doing everything possible to avoid that dreaded Prednisone. We avoid that like the plague.

It's been nice to see him smile and be happy again.
That makes me happier, too.

It's been a tough month, that's for sure. These little guys w/ lung issues really take this kind of thing hard. It's a reminder how fragile he really is. He's not like a normal kid when they get a sniffle. For us, there is no such thing as a "simple cold".

Still not feeling so hot

Hopefully he'll be better tomorrow... tomorrow will be his last day on antibiotics.

Mike just got "the call" :-)

He starts his new position as a Sergeant on March 8th.

I am so proud of him, he worked so hard for this.
He's beaming with that great smile of his.

Feeling Better

A five day regimen of Antibiodics coupled with his own ever-improving immune system has brought Matthew out of his cold. It is great to see him this chipper first thing in the morning.

Le'me have that cell phone ... blink blink