High School Presentation

Last week Warrior gave his first high school presentation about organ donation.

We took a training class in January 2012 to learn how to give presentations to high school students.  Then Tin Man started getting sicker and it was something we put off.  Then it was something that was going to be something Tin Man and Warrior could do together.

Then Tin Man passed away and it wasn't something any of us were ready for.  The kids loved telling people about Tin Man and everything he went for, but they weren't ready to answer the questions that come with the presentation.

Even now, a year later, Warrior was extremely nervous.  He was afraid he wouldn't have the answers, and he was scared he'd start crying and embarrass himself.  You know the big macho act most teenage boys put on.

I think it surprised him seeing some of these high school boys, some his friends, some big football jocks, tearing up.  I think he also realized that crying because his dad died is much different than crying because he got hit by a ball.

We could tell, and the teacher told us that he has sat through several presentations on organ donation, but he had never seen anyone impact the kids like Warrior did.

Here is someone their age, that has been through hell and back, and still fighting for what he believes in.

The teacher told us a few days later that the kids from that class were still talking about it and how if anything were to happen to them they wanted their families to donate their organs.

Warrior is definitely ready for more chances to speak to high school students.

Lupus Awareness Month

I was diagnosed in March 2008 with Lupus and Scleroderma.   It took me 2 years and 3 doctors before I found a doctor that would actually listen to me and take me seriously.  Then it took almost another year of tests before I got a diagnosis.

In that time I could barely get out of bed.  I would sleep 15 + hours a day.  I felt like I was coming down with the flu, but I never actually got sick.  I hurt.  A hurt that I couldn't describe.  To this day its still hard to describe so that people can understand.

Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years. In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs ("foreign invaders," like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues ("auto" means "self") and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.

I have my good days, and bad.  Sometimes I can tell when I'm getting ready for a flare, and other times I can go to bed feeling fine and the next day I'm not.

I have also learned that I have to spare my energy.  When I first was diagnosed and the medicines were starting to help me feel better, I would try to fit as much as I could in on the good days.  I'd wake up with energy and feel like I needed to make it count.  Then I would spend the next 3 days trying to recover.

Now when I wake up with energy I try to limit myself to 1 hard chore and 2 medium chores.  If it takes longer to get things done, so be it.  Especially now, being the only parent, I have to be able to function to take care of my kids.


I have had many people ask what Lupus feels like.  Its not something you can really describe in a way a healthy person can understand.

Then I came across this excellent article by Christine Miserandino called The Spoon Theory.  

She does a wonderful job explaining what its like to live with Lupus and how simple everyday chores can be hard for us to deal with some days.

The Spoon Theory doesn't just work for Lupus, it works for many "invisible" diseases.  We used it a few times to explain to people why Tin Man wasn't able to do things.  He looked healthy, but he was far from healthy.  But because he wasn't on oxygen 24/7 people didn't see him as being that sick.

I urge you to share The Spoon Theory with your friends, family, and readers. 

Wordless Wednesday - Sign Up To Be A Donor

My Wordless Wednesday is a little different this week.

Warrior has wanted to make a video about his dad for several months now, but he's never had the courage.  Until now.

He tried making this as a video but broke down half way through it, so he decided to do it as a series of pictures instead.

There's no sound.  No music.  Just his message.

I'm so proud of him!

Newborn Heart Defect Screening Awareness Day

November 30th is Newborn Heart Defect Screening Awareness Day.

What is newborn heart defect screening? Also called pulse oximetry screening, it's a simple, noninvasive screening. Pulse ox saves lives!

One in 100 babies are born with a congenital heart defect, and on average less than half are detected before birth. With late diagnosis, babies can suffer life-long delays and disabilities and even death.

Please join in and spread the word!

Don't forget to like the Facebook page!
https://www.facebook.com/November30AwarenessDay

Wear pink and check out these sites for more information about how to get involved:
http://www.babyheartscreening.com/November30
http://www.corasstory.com/

Children's Grief Awareness Day

Today is Children's Grief Awareness Day.

Its not just for kids who have lost a parent, but kids who have lost anyone close to them, grandparent, aunts, uncles, even siblings.

I wish I had known about this before now.  Its suggested that people wear blue to show support to these children.

I would have talked to Sugar Pea's school about doing something there.  Not so much to show support, but to explain to the kids what grieving is and that everyone does grieve differently.  Just because it works for one person doesn't mean it works for another.

There are 2 other girls at the school who lost their mom a couple years ago.  They have become a huge part of Sugar Pea's life.  They get what she's going through.  They get the fears she has.  They get the looks and the whispers from other people.  Not just other kids but from adults too.  I've over heard adults making comments about how happy Sugar Pea is.  Or on one of the bad days they make comments about her meltdowns and how she's acting this way because she didn't get her way.  Yet a year ago someone not throwing a ball to her wouldn't have ended in this kind of reaction.  Little things that shouldn't matter set off everything that's raging inside of her.  Warrior is the same way. 


I know from having lost my dad when I was 14 that grieving as a child is totally different than grieving as an adult.  Unless they've been through both, they don't get it.  That's ok.  I have learned that those that don't get it, either what I am going through or what the kids are going through are the lucky ones.  They haven't had to go through this emotional battle.  I wouldn't wish this on my worst enemy.

As much as some of their comments hurt and do make me angry, I have to step back and remind myself that they are a lucky one.  I've had talks with the kids about this too.  But explaining it to them is hard, because I don't want them to feel guilty for being happy and laughing.  For having fun with their friends.  Some people forget that these 2 amazing little people are grieving too because they see them laughing and playing.  They dont see what's going on on the inside.  I have had people tell me they forget the kids are grieving too because they see the kids laughing and playing at school or when they're with their friends.  I get why they feel this way, but even so it bothers me.

They aren't always vocal about their feelings.  Even with me.  Sometimes I have to drag it out of them.  I can tell they are hurting and they want to talk, but don't want to because they know its going to cause them more pain to say it out loud.  We do talk about the good things.  The memories.

Just last night we were talking about one night we were at a hotel in Vegas and Tin Man ran into the wall coming out of the bathroom.  Instead of taking 3 steps to get past the closet, he turned right away and ran into the wall.  This was just before he got really sick.  Almost 4 years ago, and we still laugh at the thought of that.  Even better was we found a tshirt that says Don't Follow Me, I Walk Into Walls on it.  The kids got him that for Christmas that year.

The memories are easy to talk about.  Its the hurt and anger that we are feeling now that the kids have problems talking about.  They would rather not talk at all if they could, but they are realizing that talking about it helps to stop the meltdowns.

So they give in and humor me and will talk to me when things to get bad.

I do hope that Children's Grief Awareness Day will become something more people talk about and hopefully it will bring more of an understanding to what these kids are going through.  Not just that, but how they deal with it too.

5 months and Donate Life Walk

Don't forget to enter to win a $25 Macy's gift card.

Its been 5 months since that horrible morning.  5 months since I made the choice to let Tin Man go.  That was one and will be one of the hardest choices I ever have to make.  In some ways it doesn't seem like its been that long and in others it seems like a lifetime ago.  Either way it still hurts.  I still have days that it doesn't seem real.  Times where I get excited when I hear a car door.  Then everything comes rushing back and I find myself in tears again.  I know this is normal, but normal or not, it sucks.



In honor of Tin Man and his donor, the kids and I walked the 2 miles on Saturday at the Donate Life Walk.

We walked it last year with Tin Man. Even though it took us almost an hour and half to walk the 2 miles, he finished it. He was so proud of himself, and even though I was annoyed with him because he was having problems breathing, but determined to do it, I was proud of him too.   After he got his transplant we talked about this years walk. It was the first big thing he planned on doing after transplant.

Even though he didn't get to do it, the kids and I decided this is one way we plan on honoring him, and his donor, every year.

It was hard. Seeing people that new and loved Tin Man.  These people deal with organ donation on a daily basis, whether it be a donor family, a receipiant, or a volunteer.  These people have their own stories to share, but to see just how much Tin Man's story impacted these people amazes me.  Not just his story, but who he was as a person.  He was just one of those people you couldn't help but love.  He had all the reason in the world to complain, but he never did.  He always found the positive things he could focus on.  That's one thing anyone who knew him remembers most. 

We had a picture of the kids and him from last year's walk that we carried with us.  This picture caused a lot of people to stop and ask about it.  The kids loved being able to share their dad's story with others.  Even though it brings a lot of tears, in some ways it brings on healing too.

We met one guy that was only sick for 4 years before his heart transplant. He told us that he couldn't imagine living his entire life with a sick heart. He was even more amazed when he found out that Patrick played baseball and hockey, plus marching band. 

They also had an area where you could write a message to your loved on on a butterfly and then plant it in the garden of butterflies. The kids and I each did one, but there was a total of 9 butterflies for Patrick. Seeing how much he impacted these people, who deal with organ donation on a daily basis, amazed me. Its just another reminder about what kind of person Patrick was, and also adds fuel to my wanting to continue honoring him and sharing his story.

There were many tears, but it was a great day. We got to see a lot of our friends and extended family, and we made new ones. The kids and I still aren't quite ready to jump back into being Donate Life Ambassadors full time yet, but we're slowly easing our way back into it.

Flying Donate Life

Tin Man's boss owns 3 monster trucks.  Time Flys, Fired Up, and their newest one, Detour.

Tin Man asked him if he'd consider flying a Donate Life flag on one of the trucks to help raise awareness.   

CHD Warrior - Liam

First let me say I adore this guys cheeks!   Liam is another CHD Warrior that Sugar Pea and I follow on a daily basis.  Sugar Pea talks about Liam to all her friends like he's just the little boy next door.

Liam was born February 18, 2011 to Whitney and Brody Lyon in Ft. Smith, Arkansas.  It wasn't known until after Liam was born that there was a problem. Thanks to the doctor's great skills, Liam was quickly diagnosed with Hypoplastic Left Heart Syndrome, which is fatal if left untreated.  He was transferred that evening by Life Flight to The Children's Hospital at St. Francis in Tulsa, Oklahoma. The doctors spent the next week trying to decide which would be the best route to take and decided that he needed a transplant instead of the 3 normal surgeries for HLHS (Norwood, Glen, Fontan).  He was then transferred to Arkansas Children's Hospital in Little Rock, Arkansas. 

The doctors there decided that he should have surgeries to try and make his heart work as long as possible.  He had the Norwood, but it wasn't working quite right and they had to operate again. It was becoming apparent that the surgery didn't go as they expected and he was then listed for a transplant.  

On July 25th they got the cal that there was a heart for Liam.  Somewhere a family chose to give other babies a chance to live during their time of grieving.  For the 5th time in 5 months he had another surgery, his long awaited transplant.  

Liam was able to go home on 11/22/11 for the first time in his little life!


Just after Christmas Liam's family got some difficult news.  I'm coping and pasting this from Liam's Facebook page because they can explain it better than I can.

Its the last day of 2011. We have had some difficult news this week - the kind of news that makes your head swim. Liam has had the fluid collecting in his belly - he has had two seperate episodes that required a "pigtail" to drain the fluid. In investigating this, they were doing another heart cath and decided to check "south" of his heart - when the did, they discovered that the inferior vena cava (the large vein that drains the lower part of the body and returns it to the heart). They knew there was some issue with this vein before now, because they used to gain access to his heart through his groin - and thread it up through the inferior cava. At some point, they couldn't get through there anymore and they had to gain access through his neck (and I gues the superior vena cava). The inferior vena cava is just not functional any more - from the multiple heart caths - which HAD to be done. We sure are not blaming anyone for this - it HAD to be done. The problem is now, they say at Arkansas Children's, they have never seen this and there is nothing they can do about it. He has to develop what we call collateral - meaning collateral circulation to provide venous drainage and return to the blood from the body to the heart for oxygenation. We were even asked if we wanted to put him through these episodes - as nothing can be done. If you remember, before he got his transplant, he was having palliative surgeries to sustain him and he was developing collaterals so fast, they had to be coiled and recoiled to make the blood flow where it was supposed to. That is a higher pressure area - and that induces faster collateral circulation - but we know the boy is a collateral making machine.

Liam is now in Boston where hopefully doctors can help him with this problem!

If you're not already a Liam follower, check out his Facebook page for recent updates and picture of this adorable little man and his cheeks!

CHD Warrior - Baby Pierce

Baby Pierce is another little fighter that Sugar Pea and I check on every day.  Pierce was born 7 weeks premature with Heterotaxy Syndrome, TAPVR, Right atriall isomerism, common AV canal defect, 2 large VSD's, one common yet large ventricle (able to be divided into 2 functioning ventricles).  He's now 6 months old and had the open heart surgery he needed to repair his heart.

I started following Baby Pierce's story back in late November or early December.   This little guy has been through a lot in his short life.  Not to  mention everything his family has been through.

Some of you may have heard about Baby Pierce from Anderson Cooper 360.  This is the little boy that medicaid refused to transfer to a hospital that has 10 times more experience with his condition than the hospital he was at does.

After many many many CHD "Heart" Mom's got together to raise money and awareness about Baby Pierce, Elizabeth Cohen traveled to Indiana to do a story on Pierce.

After the story the hospital decided to pay for Pierce's transport to Boston Children's Hospital.

Like most CHD Warriors, Baby Pierce's story is on going.  I highly suggest following his amazing story on his Facebook page.

video from Anderson Cooper 360

CHD Warrior - Riley

I met Riley's mom, Carol, on Twitter back in July. Instantly I was hooked on this amazing little boy's journey. On August 2nd Riley got his 3rd call that they had a donor for him. Sugar Pea and I sat glued to the computer hoping for updates on Riley. Sugar Pea hoped and prayed that Riley would get his much needed transplant on August 3rd, her birthday. She was devastated when we read that Riley was sent hom to wait longer because the lungs weren't good enough to transplant.

Sugar Pea has a list of kids she wants to check on in the morning, and before she goes to bed every day.  Riley is at the top of her list.  She always tells me that even though she doesn't know Riley, she feels a connection to him because he's part of the family of people waiting for a transplant.

You can join Riley's journey at www.smile4riley.com.

Riley's journey is such a complex one, I thought it would be better coming from his mom.

I was told that Riley had Heterotaxy Syndrome and Complex Congenital Heart Disease when I was 22 wks pregnant. This was when I was sent for a third ultrasound, a Level 2. The doctor who told me the news was not very positive. He said that babies that are in Riley's situation do not fair well. He gave a survival rate of 50% to one year. I certainly wasn't expecting the news.


The following day I contacted Children's Hospital in Philadelphia for a second opinion. They set up an all day evaluation that consisted of an ultrasound, an echo and then a meeting with a team of doctors. They, too, said that Riley's case was very serious, but they would do everything they could to help him. They said he would have to have a three stage procedure to try and fix his heart, but that his biggest issue was going to be his Pulmonary veins. They were going to have to be rerouted at the first surgery, and they were very narrow. They weren’t even sure if they were going to be obstructed at birth. If they were he would need immediate surgery.


Riley also had a CCam in utero. That was discussed at the meeting, but luckily it got smaller in size, and we have not had to address it. We discussed that he may need the Ladds procedure if he had malrotation, but that couldn't be fully DX until after delivery with an upper GI.


It was also decided that it was better for me to deliver at University of Penn. next door to CHOP, in case his veins were obstructed at birth. I also was scheduled for an Amino. They wanted to rule out any deadly Trisomy's, so we knew that we could move forward with the plan of care.I transferred all my care to CHOP the next day. I went every 2 wks and had an ultrasound, and every fourth wk an echo. It was very emotional to say the least. I was preparing to have a baby that they could even tell me would live. I dreaded every echo. It was always the same bad news about his veins.


Finally they decided to induce me on April 4th. I was due April 25th.They took Riley from me immediately at birth. I did see him for about 2 minutes when they wheeled him down to my room on their way over to CHOP.Once at CHOP Riley went directly to the CICU. Luckily his pulmonary veins were not obstructed. They ran all of their lines through the umbilical cord, and set him up to the heart monitors, gave him some oxygen, and then we waited.


On the fourth day he went in for Stage one. He had a BT Shunt placed, and his veins repaired. He then spent about a week in the CICU before heading down to the CCU. While in the CCU it was determined that he did have malrotation, but that the Ladds would be discussed later. Riley first came home from the hospital after 2 weeks. He briefly had a NG Tube for feeding, but that only lasted a few days until he pulled it out.


I knew once we were home our next dreaded appt. would be an echo. Sure enough in June Riley had an echo and it showed that his veins had some obstruction. They sent him for a Cardiac Cath about 2 wks later. While in the Cath Lab it was determined that Riley's veins would need be repaired again surgically. The doctor also made sure to tell us that Riley having Heterotaxy on top TAPVR made things very difficult and hard to fix.


In July Riley went in for his "Sutureless Repair" surgery. This was now his second open heart surgery. The surgeon believed that the surgery went well, and that the blood was flowing again. At that point he believed we could head toward Stage 2 of the procedures around December, however, he could not guarantee that the repair would hold, and that Riley would not form scar tissue that would again cause obstruction. All we could do, though, is move forward. Riley spent about 2 wks in CHOP after surgery.


Then we went home, again, until the next appt. During this time Riley's meds are continuing to increase. He has antibiotics for the lack of spleen from the Heterotaxy and he has several heart and Reflux meds.


Around the end of August Riley had another echo. Would you believe that it showed obstruction again?!


Our only option now is to back to the Cath lab. There is nothing more surgically that can be done. Two weeks later Riley had another Cath. This time "cutting balloons" were used to try and open his veins. It was once again successful, but once again there was no promise that it would hold.
Now things are not looking good. Nothing can be done to Riley's heart or his abdomen unless his veins are stable. So everything is on hold.


Again we go home. All this time that Riley is having vein issues he is also having severe reflux issues. Throwing up all the time. He is below 5 percentile in weight. He is taken meds for reflux, but their is still an issue. They may surgically address the reflux, but again can’t do anything if the veins aren't stable.


The end of October Riley had another echo. The obstruction has returned! Our only hope now is to place stents in the veins. Riley went back to the cath lab mid November. During this procedure he had stents placed in three of his four pulmonary veins. The doctor told us that this was pretty much the last option. If the veins obstruct again with the stents they will balloon them, but they will not continue to do that if it’s not working.


Then in December Riley decided that he didn’t want to eat anymore. So January '09 he had a G-Tube placed to assist him in his feeding. The surgery went well we had a couple minor set backs, like the G-Tube fell out the day after surgery. Now, though, he has the tube in and receives all of his meds and feeds via gtube. In addition, to the insertion of the tube they also removed his appendix and they took out his intestines and put them back in, I would like to say the right way but they are the right way for Riley.


In March they did another Cath and used the cutting balloons on 3 veins and they put a stent in the 4th.


In April they did another Echo and two veins were obstructed so now it was off to the Cath Lab for another intervention with cutting ballons. They have spoke a little about a transplant but with his veins so unstable that still seems to be an issue to have him listed.


October '09 ~ Well we have come to that point, the place we had hoped we would never be. During a cath it showed that one of his veins was completely occluded. Riley's needs a Bilateral Lung/Heart Transplant. We had hoped it wouldn't come to this because the survival rate is Extremely Low to age five. However Transplant is Riley's only hope since his veins are failing.


Since being listed for transplant Riley has lost an additional pulmonary vein. He has a Cardiac cath performed every 8 weeks. Scheduling his 20th cath for mid Febuary. He also requires 3L of O2 24/7.



At this point Riley has been waiting for more then half his life for his Gift of Life!


Riley's official diagnosis is ~ Heterotaxy Syndrome (Asplenia Type) with CAVC (common AV canal), Pulmonary Atresia, Right Ventricle to Aorta, TAPVR (total anomolous pulmonary venous return)(Infradiaphragmatic-unobstructed) and RRA s/p LMBTS (right aortic arch status post left modified BT shunt), patch augmentation of Pulmonary Artery bifurcation and TAPVR repair at 4 days old.