The blogosphere and new friends in life

I want to say that I've become very attached to so many of my e~friends that I've met on the blogosphere. I love that we stay in touch via e~mail along w/ "commenting" back and forth!
I've even talked on the phone w/ the Queen, Gina, Slackermommy and JennyHaHa!!
Hee hee, I wish we could all get together for a picnic or something.

There are such wonderful and caring people out there. I am so amazed that people you've never even met in person, are still so warm and loving. It's heartwarming.

Sidebar: I do wish everyone listed their e~mail in their profile, so when they leave a comment, I could e~mail them directly. They can even check a little box in their profile "to show e~mail" then I could reply directly to them from the e~mail when they post. Do you you know what I'm saying? I think I just made that all confusing.

I decided that I would just come out and say how I feel about my e~friends .... partly because
I was over at Gunfighter's and Dorky Dad's place tonight ... they both wrote a post on this blogosphere subject ..... I was excited to see that they even mentioned my little ole blog. They wrote what I've been thinking all along. (If I knew how to link their blog to their names, I would... but I don't know how!) I figured that I would come out and let ya'll know how much I appreciate you.

Every day, I look forward to jumping on my computer to read comments on my blog and then run around to others blogs and see what's up!! I actually feel bad when I don't have time to get to each and every blog for a visit! I worry that I'm being a bad e~friend. I am very behind right now, BTW .... sorry! :-/ I never want to be rude and not visit someone that has come to my blog or Matthew's blog. I just get so busy with this life of mine. I even miss it when I'm camping in Beaver. I drive the hubby batty, I am so addicted to this bloggin.

I also want to say that if I have somehow missed you and your blog isn't listed on my blogroll ... please e~mail me and let me know so that I can add you to the list!!! I don't mean to leave anyone off.

It's so funny, not one of my "real life" friends blog (well, that's a lie, I do have one that has come to my blog, once... but my own family doesn't come to my blog.) ... we just talk on the phone or e~mail each other.

This is a whole new, fun world!! It's a nice break from the "real world."

So, thanks everyone ... for being so fun, thought provoking, caring and wonderful .... and especially supportive!!

And.... I love that you all care about my little boy.... it certainly helps me.

Life is good

All is going well! Mom found that her cancer is NOT back ... the nodule they found is just scar tissue from her previous breast cancer surgery!!! We are all so happy and truly blessed.

Mike and I will be testifying before the NV legislators on Wednesday, April 4th ~ I'm anxious and nervous. I was on the phone w/ the Governor's office today, they want to hook me up with a non profit organization to help all children get health coverage. They need speakers ~ yikes!
The article about our insurance story written by a senior editor of a Washington D.C. magazine will be in an AARP magazine soon. A photographer is flying in to take pics on Wednesday. Wow!

My crazy week is going more smoothly than I had thought!! Having a great time w/ my friends from out of town. I am going to see Mamma Mia at the Mandalay Bay tomorrow night!

Weekend in Beaver!

We had a busy weekend in Utah. We left for Beaver on Friday morning and got home last night. Mike and my nephew planted over 60 trees around the property. It is so incredibly beautiful there. It's hard to come back to Las Vegas after being in such a peaceful place. The weather was cool and crisp.

I tended to little Matthew who didn't feel well all weekend. Poor little guy. Not sure if it was the altitude or if he had a touch of the flu. (Update on Matthew's blog. I'm so irritated at our G.I. doctor for not doing his job. www.whomagoo.blogspot.com)

We have a crazy week coming up ... a couple doctor appointments for Matthew (Mom also has an appt. Wednesday re: a nodule they found in her breast during a routine mammo, she had breast cancer four years ago),

misc appointments throughout the week,

four friends coming in from Arkansas and California starting on Tuesday (they'll be staying on the strip, I'm hoping they rent a car or can take a cab here, it's such a PITA driving on the strip ~ traffic is quite awful here),

we'll also be helping my son move into his new home over the weekend.

Oyyeee... not sure how I'm going to pull it all off
or if I'll have time to blog :-/

I'll do my very best to get around to say hello!!!
Have a great week!!!

Beware! Guard Dog on Duty

Isn't this the craziest thing you've ever seen! I get out of bed for a short while one morning and I come back to find Quixa nestled up to Mike. She looks alllll too comfortable with her head on my pillow!! She usually sleeps on the floor, but she does try to sneak up whenever she can.

Awwwww..... my little Petie did go to Heaven!!

Look at this cute picture I stumbled on over at "Glitter Graphics" ...
thank you Burg for letting me know about GG's. Funny thing, this is what Petie looked like before he got his "lion shave." I sure miss my little old man...

Sorry I've been missing in action for a few days. I haven't had a chance to go run around blogging ... I feel bad!! I will try tonight ... if I don't fall asleep! Last night I was watching "Dancing with the Stars" with Casey ... I love that show!!!! I want those girls figures, I am so envious!!!! Maybe if I worked out 12 hours a day and quit eating all day long I could look like them!!

We're getting ready to start building our little cabin in Utah. We're sort of being forced to get started or we'll lose our water rights...oh well, what can ya do? It's about 8 years sooner than we planned. We're excited and nervous all at the same time. So, I've been busy on the phone w/ all kinds of people trying to get the ball rolling. Once we get the cabin started ("showing intent") ... then we can apply for another extension and spend the next five years finishing it up ourselves. Mike had wanted to build all by himself, so he's kind of bummed.

I went to a neighborhood meeting last night w/ several city officials ... I attended b/c I'm trying to get speed humps on my street where people insist on driving 90 mph. What is so sickening is that you have to have 800 speeders to qualify for humps... and "we only have around 500 speeders." Holy Cow!
It only takes one speeding car to hit and kill a child. I've been trying for two years now... I was able to get most everyone on my street to sign a petition for speed humps. The city simply doesn't listen. Unfortunately, a tragedy needs to happen first. Isn't that usually how it works?????
I lost my 11 year old brother Danny, to an impaired speeding driver when I was 14 years old ...he was on a street w/ a crossing guard to boot .... the driver was a mother of three who was on Valium....
so I have this "thing" about speeders and drivers who drink/take drugs/use cell phones in their hands when they drive a motor vehicle. We'll see if they come up w/ something...
but the truth of the matter is, if people would just obey the 25 mph speed zone in a residential neighborhood ... there would be no problem. So frustrating.

Anyhoo .... Have a great day/night/week/weekend!!!

"Remember When" by Alan Jackson

Musical Monday week 4 ~
This song is played to clips from "The Notebook." This is such a beautiful and touching song. The people who put this video together did a great job.
A song about absolute true love!!!

My heart is breaking ...

My son Casey just took our little 20 year old cat, Petie to the vet.

It was "time."

I am soooo sad... :-( :-( :-(

One year anniversary today

It's been one year today that Matthew had his second open heart surgery up at LPCH @ Stanford. It was much better the second time around, we were out of the hospital 8 days after the surgery. It's been a great year.

My little soldier boy!

Testifying before the Legislators coming up

Oh Godrey, I'm nervous!

We received and e~mail from Senator Heck this week confirming that we still plan to testify before the Nevada Legislators. No doubt, we will testify. We aren't sure if we'll be able to go up to Carson City. It all depends on Matthew's health.. he's still experiencing some issues w/ his lungs and I can't go out of town unless he's 100%. The original plan was to go up to the state capital and be there in person ... but we may have to stay here and speak via teleconference. An anchor from Channel 3 news wants to be there. We're fortunate that the local news media wants to be involved. Nothing like the media to help keep on the lawmakers and the nay sayers!!

I have been told that our story is "the perfect storm" and it should help to open some eyes around here!

The Fraternal Order of Police is also helping us to lobby for much needed changes in this state. (It is all explained in my post dated Feb. 21st re: Healthcare/Health Insurance.)
A representative from the FoP has already talked to several lawmakers and is trying to set up a meeting with the Governor and/or his wife.

I have a phone conference scheduled with the General Council for Governor Gibbons on Tuesday at 10 am ... I'm very excited. I am the big ole squeaky wheel and I want to be the "John Walsh" for the middle class and above when you "run out" of health insurance or if you're uninsurable.

I have a local pediatrician on board, too ~ YAY!.... he is starting all over in his 60's after his wife suffered a stroke and lived for one year in a facility .... it wiped him out. He ended up having to divest and become her legal guardian (instead of her husband.) I actually have two other families of cardiac babies that will testify ... they also ran out of insurance, with no good options.

I just need to sit my bupp cheeps down and write out my testimony .... it will be similar to our speech back in August ~ I have to get as much power to my punch as possible!!
I want it to be perfect ... to the point ... effective.... and no rambling (I tend to do that) ... but there is so much to say!!!

I will be glad when it's over ~ it should be in the next couple weeks. I get the biggest butterflies when I think of it! :-/

P.S. A senior editor for The New Republic magazine in Washington D.C. contacted me this week (he wrote a powerful article in October about what happened to us) and he is interested in using our story for an AARP magazine article. He has a book coming out in April regarding healthcare in the U.S.

"I Love..." by Tom T Hall

This is a little 2 minute video to the song, "I Love..." that my husband spent 6 hours putting together...

Those of you that follow Matthew's blog saw this already in January.
So, since it's musical Monday... thought I'd post on my blog, too.

Mike timed the pictures out perfectly to the song. He's so cute.

This of course, is a favorite video of mine ... I love the sweet song. Mike put some before wedding pics, a wedding pic, family, pet and Beaver,Utah pics. Of course, lots of pics of Matthew during his stay at LPCH @ Stanford...which includes a picture of us with the surgeon that saved Matthew's life. The picture of us kissing Matthew was right before they took him away for his second surgery.

Musical Monday #3 ~ Love Me When I'm Gone by 3 Doors Down

Woops... almost missed the third week of "Musical Monday" (taking after Dan from 0ddness)...
We've been up in Beaver, Utah since Friday and I'm just now getting myself back together!

Here's Love Me When I'm Gone by 3 Doors Down (Live in Germany).

I loved the original video, it is dedicated to all of our wonderful servicemen and servicewomen in the armed forces ~ God Bless Them! ... it was such a touching and moving video.

Anyhoo, I'll be back when I have some time to myself.

Our other babies, starting w/ Quixa

This is Quixa, she's our Belgian Melanois. This dog is the greatest!! I had never heard of a Belgian Melanois until Mike. These dogs are fast ~ hence the name Quixa.
We actually picked her name out of a German Shepard book. She is so loyal and devoted.

Aimie

This is our Yellow Nape Amazon, Aimie. We've had her for 5 years now, we rescued her from a pet store. She speaks Spanish and we rarely know what she's saying. She mainly jibber jabbers like a little child.
She's a daddy's girl and loves Mike ... she takes showers with him, rides on his shoulder when we are driving to Beaver, she has perches in the family room, living room, shower, garage and backyard. When we come home, we must get her immediately or she starts yelling..."HELLLLLLOOOOOOOOO"!!!!! In this picture, she is eating a chicken wing. Our parrots love to eat hamburger, scrambled eggs, tiny amounts of cheese and peanut butter, grapes, bananas, apples. We spoil them rotten.

My little old man, Petie Cat

This is Petie Cat, he is 20 years old this month. I got him when my oldest son was only 4 years old. This is the sweetest cat ... he had a twin brother, Magic that crossed the "rainbow bridge" a couple years ago. In this picture, he had just been shaved "the lion cut". I am feeling like Petie doesn't have much longer, and I'm quite sad over him.

Sunbird/Sunnie

This is Sunnie, our 12 year old Catalina McCaw. We rescued him about four years ago.
He's such a talker and has quite a vocabulary. He tells himself to "shut up" and "bad bird, baaaaad bird" after he screams ... He say's "ummmmm", "is it good?" "ummmmmm" while he's eating.
Tells us hello when we come in and BYE when we're leaving. He's always asking us to give him a kiss and to "come' ear". He keeps up completely entertained!

Moose ~ the toy dachschund

This is Moose ... or Moosie our toy dachschund ... Well.... she was our dog for two years and we love her so!! We used to say... "we have a Moose on the loose"!!

We ended up giving her to my parents when we were at Stanford for three months with Matthew. It was horribly sad for us, but my parents took such good care of her while we were gone and she was so happy with them. Matthew required soooo much care when we finally came home from the hospital, that we simply couldn't give this little doll the attention she needed. We see her all the time and she loves to sample Mike's drink when we go for visits.
She was only 2 lbs when we got her... this little dog has sooo much personality packed in this little body. Mom is always calling me laughing her head off telling stories of our little Moose.

The attacking squirrel

Details of the attacking squirrel was first reported over on Flawed & Disorderly's blog:
http://www.jennyhaha.blogspot.com/

Healthcare/Health insurance

I'm going to "go there" because it is on my mind constantly.

I never gave healthcare/insurance a second thought, until our baby almost "ran out" of health insurance. By the time Matthew was 10 months old, 1.9 million of his 2 million dollar "lifetime cap" had been met.

Lifetime cap?? Oh.My.God. I had never heard of a "lifetime cap" in my entire life! I had raised a 22 year old without ever reaching the deductibles and I have always been very very healthy. You just think ... when you have insurance ... you have insurance, until you lose your job or discontinue your coverage. You think you are safe.

NOT always true. You should go check your policies. If you have a one million or two million cap... trust me... it's not enough if you have a major medical event. Also, they can have clauses in there that you don't know about. For three months at Stanford, we were told we were OUT of insurance b/c heart transplants had a $250,000 maximum payment... even though he didn't have a heart transplant... but a graft... the re~insurer tried to cut us off.

I think it is disgusting that in this rich country of ours ~ the middle class and above get screwed.
We middle class pay the taxes that pays for Medicaid. BUT, if we middle class "run out" of health insurance w/no options ... WE are not protected. At least if you live in Nevada. Yes, we supposedly have HIPAA to protect us... but from our experience ... the insurance companies find every single loophole possible to get out of it.

We were "not eligible" to purchase private insurance for Matthew... we fell thru every loophole the HIPAA protection had. Because we earn over the poverty level we (Matthew) didn't qualify for straight up Medicaid. "No health insurance" would be a death sentence for this boy who will need a lifetime of heart surgeries and care.

We were facing horrible and outrageous options ... such as: DIVORCE (so I could be a single, poor mother), moving out of state to another state that has a "high risk pool", giving Matthew up for adoption to a family member (saying we were unable to care for our baby), or my husband quitting the job he loves in hopes of getting more insurance at another municipality ...

WHAT IS THAT???? How crazy is that??? Makes me spit firing mad every time I think of it.

It was 18 months of a living hell (that I could never relive) ... not only worrying about the life of our medically fragile baby... but then to worry about the financial end of it at the same time... it's almost unbearable.

Luckily for us, my husband's employer raised the lifetime cap this past November. Just in the nick of time, I might add.
This was a livesaver for our family and Matthew ... I am still thrilled beyond words and thank God every chance I get.

But... this doesn't change the fact that this type of thing is happening all over this country!!

You are safe in this country if you are poor... at or below poverty level ... then you will get all the medical care you need. Medicaid pays for it all. We have seen "illegal" mothers get free healthcare for their babies and other families that went home to care for their baby with a Medicaid card. No worries for them. But, not us....forget it...."we make too much money". HA!! Anything over the federal poverty level means you make too much money. I sure don't know anyone in my life that can afford Matthews care without health coverage.

My husband and I call this "reverse distribution".

Healthcare prices are so outrageous now... no one can afford it without insurance. Holy Cow, even with insurance, these cardiac kiddo's are VERY VERY EXPENSIVE and can be quite a financial drain. It's no wonder we almost "ran out"~ because of the horrible prices our insurance paid out. Everyone should treat their health insurance as if it's a savings plan and watch every penny spent. FYI, one hospital overbilled by $130,000.

That is why we are continuing our fight to the State of Nevada. We are going to testify to our legislators soon. We testified in August of last year and persuaded Senator Joe Heck(R) to draft and submit a "Medicaid buy~in " bill... unfortunately there is an income cap ... so we would not qualify. This bill will help 40+ Nevada families, I hope it passes.

We need something to protect the middle class families.

We need changes in our healthcare system. No one should ever face what we faced.

Here is an eye opening link:
http://www.washingtonpost.com/wp-dyn/articles/A9447-2005Feb8.html?sub=AR
Article written by Elizabeth Warren, a Harvard law professor called...Sick and Broke.

All went quite well today

Matthew was a champ as usual. Everything went perfectly. Mike has posted some great pictures in a slideshow pre op and post op!

www.whomagoo.blogspot.com

We will have results of some biopsies on Thursday ... but so far, everything looks pretty normal .. except for some inflammation at the bottom of his esophagus.

I explained everything in Matthew's blog.

I must run for now... Matthew is getting into everything!!

I LOVE WHAT SLACKERMOMMY DID HERE!