Jumping in the Castle

We rented a jumping castle for all the kids (& parents) to enjoy. It was a smash hit!

The Cake

No child's birthday party is complete without the cake-covered face. Matthew is getting the hang of making a mess with his food. His brother, Casey, lent a hand as well.

Our Guests

Here is a collage of family & friends who helped us celebrate.

Happy 2nd birthday Matthew!

I can hardly believe it's been two years now ... but on the other hand, it also seems like AGES ago! It's been a wild ride.
In this picture, we had no idea of his heart defect... that came four days later.

Happy Birthday to our little miracle boy! Our little soldier boy. We are blessed!

Couple more cute pics of Magoo

Breakfast Anyone?

Since Matthew doesn't eat on his own, breakfast is like a Nascar pit stop. We sit him on our lap, administer his meds, pour some fuel into his tank, clean his windshield, and then give him the green flag!

A Ride in the Wagon

Grandma Wright took Matthew for a walk in his new Radio Flyer. He loves to go for a ride and sits in the wagon like a potentate in is chariot.

Open Invitation ~ Matthew's 2nd birthday

This is an open invitation to celebrate with us.

We are having a birthday bash for the boys on Saturday, May 12th.

Matthew's 2nd birthday is on the 10th and Mike's 36th birthday is on the 13th.

No gifts are necessary! Your presence is their present!! :-)

We are planning a 2 o'clock start time and it will go into the evening.

We will have food, drinks and cake.

Mike also ordered one of those bouncy things for kids to play on.

If you think you can swing by for a visit, please e~mail me for directions and RSVP so I can be sure to have enough food!! My e~mail is: tigggrr37@aol.com

Look Ma! No cavities!!

I took Matthew to see Dr. William Waggoner, a pediatric dentist this morning.

Matthew was a champ as usual ... and no cavities!! His back molars are coming thru.

It was very interesting .... the doctor and I sat facing each other ... our knees were touching.
Matthew had his bum on my lap and his legs around me with his head in the doctors lap.
I held his little arms down.

Matthew didn't even really fight us, he did cry though ... the doctor was able to check all of his teeth and even picked quite a bit of tartar off the front of his bottom teeth. That was probably the best look that I've ever had of Matthew's teeth. So at the dentist office, it's not such a bad thing when they are wailing with their mouth open!!

We will take him again in 6 months.

We were concerned about his teeth because he was premature and was on so many medications that first year of his life. At one point while at Stanford, he was on 19 different drugs.
His front baby tooth came in with a chip and the enamel was rough.
We have also been told that breathing treatments are bad for their teeth. Doctor said to wipe his teeth off after a treatment. He also said it was good that he has gaps between his teeth, that means he'll most likely have room for his permanent teeth and he won't get cavities beween the teeth.

He said that we will keep an eye on the 6 year molars, if the teeth are ever affected by medications it will be those. He said the chip in the front tooth could be because partly b/c he was premature and because he was intubated for 3 months.

Another wonderful doctor visit out of the way! Whew!!

Life could not be better!

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.

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.

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.

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!!

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.

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.

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!

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.

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 ...

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.

The Greatest Helper

Our nephew Daniel came with us to Beaver this past weekend. He was wonderful!
He not only helped plant over 60 trees, but he helped out with Matthew. We would love to have Daniel with us for every trip!

After a long day

The boys were quite tired after working so hard planting all those trees!!
We sat by the wood burning stove in the barn for a nice relaxing evening.

You'll notice an adorable white lab sleeping under our camper. This is Amy, our neighbors dog in Beaver. She always spends the weekend with us... and plays with Quixa. She's a stowaway dog... she sneaks under the camper and sleeps on the white roll of insulation thinking we don't know she's there... actually, one night... we didn't know until the next morning. We all love her.

The Drive Home

These pictures speak a thousand words.
The only one who doesn't get to sleep is poor Mike. Amy uses the seat belt as a "hammock" ~ she gets quite comfy. The only thing we don't enjoy about our drive to and from Beaver is the gas Quixa passes.

Uh, not much help from the G.I. doctor

The G.I. doctor was of no help whatsoever. He is not my favorite person right now.

I called his office around 9:30am and gave a detailed message. His office called me at 2:00ish to say that doc was not in office today (he was at the hospital) ... and I explained again about Matthew's gagging & retching (no fever.) Then around 3:45pm an office person called to tell me to call Matthew's pediatrician (huh?), a doctor that knows nothing of any of this. Dr. Baron is the doctor that has been following the retching and called for all of the G.I. testing ... not his pediatrician. Matthew has so many doctors ~ it's so frustrating. I obviously called the G.I. doctor because this is the kind of thing a G.I. doctor takes care of ~ Dr. Baron has known of Matthew's retching for at least 6 weeks and has taken over his care (he has a huge file on Matthew.)

Then, the office person said I should call the doctor that prescribed an antibiotic Matthew is taking (which was his pulmonologist ... who will NOT be able to help me with his retching problem.) I called Dr. Baron's office back explaining that I didn't know if it was the antibiotic causing this retching ... or if it was the change in nutrition formula. Heck, maybe he just had the flu, I don't know.

Well ... long frustrating story shorter ...

I didn't call our pediatrician that can't help us with this ~ he would most likely just refer us back to Dr. Baron! ... I did try calling the pulmonologist, but hung up after waiting on hold. I love our pulmonologist, it's not his fault. I didn't want to pester him with this problem anyway.

Mike and I had a pow wow....

we decided that we will continue his antibiotics for the last couple days ... and discontinue the new formula and go back to the older formula. We will figure it out ourselves I guess. We're not going to doctor hop all over this town.

It appears the G.I. specialists don't want to be bothered with this retching problem.
This reminds me of the previous G.I. doctor we had that didn't listen to us.

Not so good weekend for Matthew :-(

This was a tough weekend for Matthew ... (and me) I hate to say.


Starting on Friday while driving to Beaver, he started gagging and retching all over again.

It was like this all weekend long ~ he simply acts like he feels miserable. We checked his SAT's and he did not/does not have a fever. Funny thing, we were just at the G.I. doc on Thursday!! ... so, go figure. He's retching just like he had in the past.... it's like he's not taking this new drug at all. Very very frustrating and disappointing. He's quite whiney and cries a lot.

I am waiting for 9 o'clock to get here so I can put a call in to Dr. Baron.
Matthew has not poo'd for a couple days We have read thru a couple of the papers that they give you w/ your prescription... all of the drugs he is taking can cause all kinds of unpleasant side effects. We're not sure if it's the new antibiotic he's on.....I sure wish he could talk.

I'm sure Mike will update the blog w/ some cute pics we took. He and Daniel planted 60 trees on the property.

GI Doctor Update

We took Matthew to his G.I. doctor today. He's not gaining as much weight as he should, so we will be feeding him four cans of Nutren with fiber per day. We are going to decrease his night feeds a bit and try to increase the volume per feed (to stretch that tummy). We currently feed him no more than 4 oz a feed. That will be increased 5 oz a feed. If that goes well and he doesn't retch, in a couple months we can increase the volume again. Dr. Baron suggested that we put Matthew in his high chair before each feed and let him play with food. He thinks that since his retching has subsided, he may have a better feeling about eating. For the past 17 months, eating has been quite miserable due to the retching. It will still take time since he has a strong aversion to anything with a taste.

Dr. Baron is also referring us to a wonderful speech/feeding specialist to give Matthew one-on-one interaction. We will most likely start this in April after RSV season has passed.

A Beneficial Side Effect

In a fleeting moment, we managed to obtain this documented proof that Matthew can drink from a bottle. Unfortunately, the only time he is willing to do this is when he is on a regimen of steroids (for his lungs). This bout of normalcy usually fades as the steroids leave his little body. This time around the steroids did not stop his wheezing. Therefore, Dr. Nakamura prescribed antibiotics to prevent a possible sinus infection. These high doses of antibiotics kill the good bacteria along with the bad. So now the challenge is to figure out a way to get some yogurt into a 2 year old Irish bloke who refuses to eat solids.

One Year Anniversary

It was one year ago today that Matthew had his second open heart surgery up at LPCH @ Stanford.

He did much better after this surgery ... we were in and out of hospital in 8 days.

Here is a pic of Matthew's pediatric heart surgeon Dr. Frank Hanley and I after his surgery.

It's been a great year of no more oxygen 24/7!! After this surgery, he came off a lot of his meds, too.