Monday, April 30, 2007

Life could not be better!

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I could hardly wait to get this out to you, so I just copied an e~mail I sent to our buddy Beth Fisher of KVBC Channel 3 news ~ She has been by our side this entire time, supporting us and helping to make healthcare changes in this state.

We simply could not be more thrilled and excited!

Dr. Mayman said Matthew's leak is actually better than our last visit!!!!!!!!!!!! CAN YOU BELIEVE IT!!!

It is truly a miracle..... in our wildest dreams, we could have never imagined hearing those words!!!!!!!!

Dr. Mayman pulled out the previous pictures of his heart and said that he can't really explain it ... only that it's rated a 3 now!!!

He said it will be "a while" before his next surgery ... sometime between one and five years... his guess would be closer to five years!!

Words can't describe how we feel.

We are in heaven.

Life could NOT be better for us than this very moment.

Dr. Mayman told me that he wants me to go home and finally enjoy life, enjoy Matthew, take him out and let him be a kid.

Tears are welling up in my eyes as I write this.

We are overjoyed.

This is as exciting as the day we were told we had more health insurance!!

We thank God.

Friday, April 27, 2007

The Red Wagon

This little red wagon was a gift from Grandma Wright. I put it together this morning and Matthew couldn't wait to get in it for a ride. Radio Flyers have come a long way. This one is plastic with a back rest, seat belt, and cup holders.

Why won't you eat?

Having a child with an oral aversion is so baffling! he resists all attempts at eating but will freely put inanimate objects like toys and household items into his mouth. We recently captured this video to illustrate our point.

Sleeping baby pictures are always a hit! So we thought we would post this one of Matthew and his favorite stuffed animal, the little spotted doggie. We here at Matthew's Blog are well aware that you are helpless against the power of a pictures like this. Posting such addictive images ensures that you will keep coming back.

Thursday, April 26, 2007

ECHO this coming Monday

We are taking Matthew in on Monday to his pediatric cardiologist for an ECHO of his heart.
I am very nervous about this ECHO. On December 1st, we were at the halfway mark for a third heart sugery.

Let me explain to those of you who don't already know this... Matthew had a (cadaver) valve replacement last March. It started leaking by May and was rated a 2. Docs rate the leak from 1 to 10, 10 meaning it's time for a valve change. By December 1st, it was rated a 4.7. It has been almost 5 months and I'm so afraid it'll be an 8 or 9.

My heart hurts when I think of it. We are trying to prepare ourselves for a surgery this year ... well, as much as you can prepare yourself for heart surgery on your child!

The problem w/ these cadaver valves ~ the surgeons can't say how long they will last. There are too many variables ... they can leak, they can calcify, etc. It all depends on their little bodies. Each kid is different. To me at least, it doesn't seem to be a good sign that his leaked so soon.

Well ... we'll find out soon enough ... With any luck, it'll only be a 5 or 6!

I frequently think of what my e~buddy, Timmy from The Special Zipper says... " it's a roller coaster ride when you have a child with a congential heart defect." What a true statement. Tim is from Australia, he has had his fair share of scares and sugery w/ his adorable little cardiac boy Connor. If you get a chance, you should drop by his blog ...he has written a sweet post about our other e~buddy Dan of 0ddness in England. Dan lost his beautiful 4 year old daughter Bethany two years ago to problems related to her heart.
Dan has been MIA for a couple months now and we are trying to cheer him up.

I thank God for the support we get from other families of cardiac children. And of course from all of our friends and family. Support is what helps get us thru it all.

Wednesday, April 18, 2007

Theme song from Courtship of Eddie's Father

Turn up your volume! The music will automatically start to play.

"Best Friend", by Harry Nilsson

People let me tell you 'bout my best friend,
He's a warm hearted person who'll love me till the end.
People let me tell you 'bout my best friend,
He's a one boy cuddly toy, my up, my down, my pride and joy.

People let me tell you 'bout him he's so much fun
Whether we're talkin' man to man or whether we're talking son to son.
Cause he's my best friend.
Yes he's my best friend.

Mike has been singing this song to Matthew for a long time. It's
such a perfect and sweet song about our little man.
I used to watch Courtship of Eddie's father when I was a kid, it was such a great show!!

Sunday, April 15, 2007

Matthew's Quilt Block

Nancy McCain, the grandmother of 10 year old Samantha (she has a half of a heart HLHS), is a member of a group of ladies making a quilt for the Congenital Heart Defect awareness quilt project. She sent us this picture of Matthew's block. We can't wait for the picture of the completed quilt.

Sunday, April 08, 2007

The Easter egg hunt

We celebrated Easter Sunday at Uncle Keith & Auntie Gabrielle's house this weekend. They set up an Easter egg hunt complete with a camouflage basket. Matthew was a little too young to grasp the concept. The ladies tried steering him towards the eggs and even resorted to throwing them in his path (to no avail). Uncle Keith & Grandpa Wright stood back and marvelled at the whole scene. Afterwards, we all went back inside and ate way too much! To view a video of Matthew on the hunt CLICK HERE.

Saturday, April 07, 2007

The Backhoe Driver

Up in Beaver we have this old backhoe to assist with the heavy lifting. Matthew was enthralled with it when I set him on my lap. This thing could make some serious mud pies!

Friday, April 06, 2007

The Sound Sleeper

I am always envious when I look in the rear view mirror and see the little prince sleeping like this. There is nothing like the rhythm of the road to put you to sleep.

Thursday, April 05, 2007

Testimony could not have gone better

Our testimony could not have gone better... Mike has posted the audio below. The audio is a little distorted and I totally sound like I have a speech impediment. Even though I sound like Sylvester the Cat in this recording, I really do talk normal (Mike says I talk fast like a fax machine). Funny. In fact, Mike sounds a bit like Sylvester himself!! Not as bad as me, though!
Mom thinks we sound like Daffy Duck...

We both did get emotional ... we didn't mean to of course,

but to us...
this is such a serious matter. We have been so deeply affected by this. We know that we very well could run out of insurance again w/ Matthew. There are no decent options for us, if that were to happen again.

We think that our testimony did make the lawmakers uncomfortable... It is ashame (a travesty actually) that we do not have some kind of comprehensive "safety net" for middle class families in this state. Especially knowing that 34 other states provide safety nets.
The truth hurts and is embarrassing. The dirty little secret is out. I keep thinking of what we heard last year, Mike and I are the perfect storm.

The local news, KVBC did have a cameraman there and he videotaped our testimony.

Will discuss it more next week ... we're heading up to Beaver for the weekend.

We are emotionally drained from preparing for this testimony. It was like ripping a scab off... and reliving that horrible nightmare all over again. The fears of it happening again are ever so present.

Of course, the bean counters were there discussing how much money it would cost to protect us, the citizens. What they don't realize, it's a matter of life or death for us ...

Tuesday, April 03, 2007

Terri's testimony supporting the Family Opportunity Act

Testimony of Terri XXXX in support of Senate Bill No.59

Thank you for allowing my husband and I to come and speak today. My name is Terri XXXX. I am a stay at home mother of a medically fragile baby and my husband is a police officer with the XXMPD. We are here today to ask for your support of the Senate Bill No.59 and to discuss further, the importance of providing a comprehensive “safety net” for all families that earn over the federal poverty level.

We are the parents of 23 month old Matthew King. He was born 2 months premature with a rare, life threatening four- fold heart defect. The defect was determined not to be genetic and was completely beyond our control as parents.

His heart defect has ballooned into a host of other medical issues.

By the time Matthew was 10 months old, he had undergone two open -heart surgeries at Lucille Packard Children’s Hospital @ Stanford . He will also require additional open- heart surgeries in the future. We are currently on a path for a third surgery that could arise any day. How many more will he need, we do not know?

We initially felt secure that we had such good health coverage with the police department. I am here to tell you, as a result of the extensive medical care he has received and the 6 months we spent in the intensive care units of two hospitals; 1.9 million of his 2 million dollar “lifetime cap” had been met.

Mike and I did all the right things to prepare for this baby. We took every test possible and all appeard to be good. We united together with our family to welcome this beautiful child into our lives.

There is nothing we could have done in advance to have prevented this from happening to our baby.

We are perfect proof that a loving and responsible family can do everything right in their life, and still end up being financially ruined because of the misfortune of a catastrophic medical event.

Even worse, how can we properly care for this medically fragile child, who will need a lifetime of extensive medical care without health insurance? Even with good health insurance, these precious cardiac children are very expensive to provide for.

We once read that parents should not even file for bankruptcy until the child dies, because the medical expenses are ongoing!

We have been told that we are not eligible to purchase private insurance for various reasons. Even if we could, would we be able to afford the premiums? Mike and I were facing horrible options.

What was suggested most often, was to manipulate the system by obtaining a divorce, with my husband taking the joint assets, so I could appear to be a poor, single mother. Not only is this fraud, but it’s not the example we choose to set for our children!

A representative of The XXXX Insurance Commissioners office stated that we did have options, but we just would not like them. Our options ranged from ridiculous to outrageous. The stated options were: Move out of XXXX, to another state that offers the high-risk pool. No one should be advised by a XXXX official to leave the state, where we have resided, voted, paid taxes and built our life together with our family by our side.

To us, it is no different than what Mexico does to their citizens, by encouraging them to move out and come to this country for better care.

In addition to this option, Mike “could just quit his job” that he values so dearly, and get another job, in hopes of getting more health insurance. Lastly, we could “give Matthew up for adoption!” We would not consider this at all! Why should we give our child up because he’s sick or disabled?

We have been told by many healthcare workers that if we were poor or illegal, Matthew would have qualified for full medical coverage by the state. We feel that the State of XXXX is allowing the system to be broken, by choosing to look the other way.

It gives the impression to the hard working citizens of this state that achievement is a liability and being dependant on the state is rewarded.

When my husband and I were in the Intensive Care Units’s for six months, we saw and heard of illegal alien mothers going home with Medicaid Cards for their babies . Why is it that the baby of an illegal alien mother, will get full healthcare coverage before our baby ~ if we were to run out of insurance?

Matthew is an American~born baby of a Gulf War Veteran who is a police officer that has served XXXX County for over twelve years. What I am saying here is, children like my son need access to medical care as well.

We listened to one mother brag about getting full healthcare coverage for her family, FREE, because she chose not to marry her children’s father.

Can you imagine, watching your child struggle and fight for life, while you worry and fret about how you will pay the medical bills, and the mother of the child next to you, is smiling and telling you that she knew how to get her bills covered?

There needs to be something in place for families like ours! It is society’s responsibility to help those that are trying to help themselves, but are up against impossible odds.

We are not asking for hand-outs. We are willing to pay for Medicaid or a high-risk pool.

I realize XXXX is always cutting budgets because there isn’t enough money. The pie is only so big. I need for you to see the importance of making this issue a piece of that pie and allocate money to it.

Currently, it is easier to deny the program and have those families needing help move away or get divorced.

In your positions, it is easier to shake your heads and say, “Yeah, that’s too bad.... but nobody will support it.”

Please do something now about this, for many legitimate XXXX families are in dire need and that need is growing. I would like to ask you to please put yourselves in our shoes and think about what you would do, if this happened to your child or spouse and you were given the same options we were given.

Families who live in the State of XXXX who earn over the federal poverty level need better and decent options.

Just because we are not at or below the poverty level, does not mean we can afford the extensive and exorbitant medical expenses for our child.

Why doesn’t the State of XXXX have a high- risk pool like thirty four other states in this day of age? Who or what is blocking this essential need?? Furthermore, why doesn’t the State of XXXX have a Medically Needy Program to help families of medically fragile children? (Such as California and Massachusetts)

It would benefit our state to develop high-risk pools for the productive citizens. These productive citizens would then continue to add to our society, and not be forced to add to the dependant burden our State is already straining to finance.

There is no one in any better position, than this senate committee to make this happen.

Thank you kindly for allowing me to talk to you.

Mike's testimony to the legislators

Testimony of Michael XXXX in Support of SB59

My name is Michael XXXX and I would first like to echo Terri’s gratitude for the opportunity to speak today. My wife has been yoked with the full burden of this issue as evidenced by her testimony.

Rather than be redundant, I would like to add my perspective as the primary breadwinner and head of household. My son Matthew was a planned blessing. While he slumbered in the womb I read expectant mother books, painted his room, sewed him a quilt, and built his crib from scratch. I once commented to a stranger that I was nesting more than Terri was.

Anticipation gave way to concern when Matthew was born 2 months premature. The next six months our life was like the movie “Groundhog Day” where the main character is forced to relive the same day over and over. Terri & I would wake up each morning, get dressed, and drive to the hospital to sit by Matthew’s bedside.

I can tell you that our concern over all of his medical problems was enough to occupy our thoughts. I never imagined that we would also be faced with financial ruin.

Like most health insurance plans, ours carries a lifetime cap per person. Until this ordeal, I had never heard of a lifetime cap. I thought once you had insurance, you were safe. Never one to seek a hand out, We first looked into purchasing insurance under HIPPA protection. But no one wanted to cover Matthew since they knew they would lose money. So it was at this point that we turned to the state for help.

We were told that we would not qualify for assistance because I earned more than the federal poverty level. I have never complained about my salary but I could make 20 times what I do now and still not afford Matthew’s initial medical bills.

After exhausting all other options, Terri and I went before the board of trustees for our healthcare and begged them to raise the insurance cap for their members. While not my proudest moment, it saved us from the insulting options that we would have been left with.

As the spiritual leader and provider for your household, how many of you would divorce and purposely make yourself appear to be a “dead beat Dad”? How many of you would sign away custody of your child, thereby acknowledging your inability to provide for your family?

How many of you would uproot your spouse from her family and lose your pension to move to another state with a safety net? Are you aware that government officials and knowledgeable consultants advise your constituents to do these very things?

I pose to you, are these options you would choose if faced with this dilemma? Ask yourself, “Is this the example I would set for my children; divorcing my spouse or filling out adoption papers?” Would you want to explain to your son or daughter, that giving them up was just on paper? Would you spend time discussing or reiterating that mommy and daddy really do love each other, they just have to pretend so they can provide?

As it stands now there is no help in XXXX for the middle class. If you look on your pay stub you will see automatic deductions for Medicaid. In effect, we are paying into a system that we cannot benefit from. This type of income redistribution is the very definition of socialism.

I am asking you to support SB59. Though it wouldn’t help our family, there are others that would be spared the threat of financial ruin. Premiums could be set on a sliding scale based on household income.

I know you are loath to compete with private insurance companies for fear of adversely affecting their business. I can assure you they are not seeking folks like us as customers.

The testimony that we have given today is from our recent, firsthand experiences and I thank you for listening.