Wordless Wednesday - Science Projects

Sugar Pea did her project on how magnets affect seed growth in lettuce and tomato seeds.

 Warrior did his project on fish water vs tap water when watering lettuce seeds.

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.   

Hope She Knows by Tommy Dalton

This is a song about organ donation.  Even though this song makes me cry every time I listen to it, I still love it.

Hope She Knows by Tommy Dalton

There was a story grandpa told, that never seemed to get old.

About a girl in “63”, she was the homecoming queen.

Everyone wanted to be like her, she held a special place in this world,

They didn’t know how short her life would be.
It all ended without warning, it left her family lost and morning.
Since that day a part of hers with me.

Then he said…

Chorus:
I’m just hoping that she knows…that by her letting go, it gave me the life I know.
And with every breath I take, Yes it is her that I thank…Each and everyday.

All my friends were talking about fast cars and women.
But me, I was fighting to be living and taking time to say goodbye to all the people in my life. I told myself it’s been a good ride.

I Thought I was in my final minutes, but then the gift of life was given.
Just when I thought I’d never get to see ……another day.

Chorus:
I’m just hoping that she knows…that by her letting go, It gave me the life I know.
And with every breath I take, Yes it is her that I thank…Each and everyday.


As I sit here and watch my grandkids grow, and I know that Im getting close to the end of the road. There’s one more story that cant go untold.


Just hoping that you know…as I’m slowly letting go….I’m grateful for the life I’ve known. When I reach heavens gates, there’s someone I’d like to thank, for the special gift she gave, cuz with it I was saved.

There was a story grandpa told, that never seemed to get old.

I Love My Kindle

When the Kindle first came out I vowed I'd never get one.  I love reading books.  I love the way they smell and the way they feel.

Then in 2009 when Tin Man was in the hospital for 2 weeks and I was lugging around a bag full of books, I decided to give in.

Aldiko is an app for android phones.  I used that up until a month ago.    It's a great app, but it drained the battery on my phone really fast.  This was a problem when we were at clinic or the hospital because I didn't always have access to an outlet.

So when my mother in law asked what I wanted for Christmas this past year I asked for a Kindle.

I was rather surprised that her and my brother in law went in together to get it because normally I get cow related crap for Christmas.  They think its hilarious to get me cow crap because I hit a cow with my car several years ago.

Anyway, the only complaint I had about my Kindle was it didn't have a backlight.  Not a problem, I went out and bought a book light.  The 2 I bought were to heavy so I invested in a lighted Kindle cover.  I wish they would have come in different colors.  I chose the green one because it was on sale, and let me tell you this thing reminds me of several diapers I changed when my kids were little.

I read a lot and the kindle lets me have a variety of books at my finger tips.  A good friend and I decided to try to read 200 books in a year.  Granted if Tin Man gets his heart transplant its not going to work.  If he does get his transplant I'm going to aim for 150.

I'll update my list as I finish books.

200 Books in 2012

Possible Kidney Transplant Too?

Yesterday we traveled up to Stanford for the appointment with the kidney doctor.

He really didn't tell us anything that I wasn't already expecting.  There is a fine line between the heart and the kidneys and living 36 years with a bad heart and then going down hill fast in the last 3 years, we knew this was a possiblity.

I love this doctor.  He fits in perfectly with our team of doctors.  He walked in and immediately started joking around with Tin Man and totally agreed with me that Tin Man seems to feel the need to make everything extra complicated.

He sat down and wanted Tin Man to explain as much as he could about his health in the last 3 years and everything that's happened at Stanford so far. 

He told us that he had skimmed through his medical records, but he likes to hear most of it from the patient because it gives him a better understanding of what type of patient the patient is.  He said a lot of people come in having to clue why they are there and can't really give much detail about what's wrong with them in general.  Then you have the patients like Tin Man that have a complete understanding of everything.

He went over the results from the blood tests (twice a month) for the last year.  He then explained to us that his kidney function has decreased by 50% just in the last year.  Right now his kidney function is at 35%.  He told us that this wouldn't be much of a worry if we were dealing with just the kidneys, but because of how bad his heart is, there's a huge worry that the kidneys are going to get worse before he gets his transplant.

A little detail on Tin Man's heart.  He was born with Transposition of the Great Arteries.  When he was 18 months old he had a baffle put in to help the 2 loops of blood pool together.  For whatever reason, this caused his heart to pump backwards, and his blood flows backwards.  Blood from the heart flows to the body, through the lungs, and back into the heart.  Now the baffle in his heart is narrowed.  He had a stent put in in July 2010, but even with that its still narrowed.  This narrowing and the fact that his heart isn't strong enough to pump normally causes the blood to back up into the lungs causing pressure build up in the lungs.

The doctor yesterday explained to us that the blood flow backing up into the lungs and the pressures are affecting the kidneys.  That the backup doesn't just stop in the lungs, but goes back into the kidneys too.  Which is what is causing the damage to the kidneys.

He said that in some cases the kidneys will repair themselves after transplant and all is fine and in other cases they won't and then things get really serious because bad kidneys and a new heart will only cause the new heart to over work and put us back in to a bad situation.

So he ordered a bunch of blood tests, urine tests, and kidney ultrasound.  Then once he gets those results back he will sit down with the other doctors on the team and figure out what will happen next.

Most likely a kidney biopsy and if that's the case, then he will need one done ever couple of months until he had his transplant so there aren't any surprises with the kidneys when that time comes.

The worst case scenario would be he would need a kidney transplant along with his heart transplant.  He did tell us to prepare ourselves for that because of his heart condition and the fact that his kidneys are declining so fast, that may be the route the team and transplant committee may decide to take.

I know God only gives us what we can handle, but seriously, he needs to stop thinking so highly of me and give me a little bit of a break.  At least just for a couple months.

Wordless Wednesday Light Pictures

Our power went out for about an hour the other night so the kids decided to put on a light show for us.  It made for perfect chance to try out my camera.

Sugar Pea's red and blue heart

This one is my favorite.  Sugar Pea's couldn't decide what to do so she just did circles with both colors.

Not sure what this one was supposed to be.

Warrior outlined his hand with the flashlight

Warrior's smiley face

Flower

This one reminds me of Jay Leno

Your Shape Fitness Evolved 2012

 When we got our taxes back one thing we splurged on was an XBOX 360 with Kinect.  The kids paid for half of it with the money they had saved up in their XBOX 360 bank.

At first I wasn't sure because there are a lot, and I mean A LOT, of games for XBOX that I won't let my kids play.  I gave in after trying it with the Kinect at a friends house.  I loved that they had to actually get up and move and not just sit on the couch with a controller.

We have the Wii, but with most of those games they just worked out the arms and not much else.  Wii Fit Plus that kids found ways to get around having to exercise when they got tired.

With the Kinect, they can't.  If they don't move, their person on the screen doesn't move.  I also like the variety of fitness games they have.

I bought Your Shape Fitness Evolved 2012 and I love it.  I love that it has beginner, intermediate and advanced exercises.  Let me tell you, even the beginner kicked my butt in some areas.

I've been using it for a week now and I am sore in places I didn't know existed before.

Right now I'm trying to get myself up and moving before I focus on weight.  I have found that for me trying to focus on motivation, weight, what I eat, and anything else causes be to give up right away.

I have a lot of weight to lose, but I'm taking it one step at a time.  If I get myself up and moving first, then everything else will fall into place eventually.

I told Tin Man I wanted to get The Biggest Loser Ultimate Workout and Zumba Fitness to add to my collection.

The more choices I have, the less likely I'll get bored.

A woman I've been following on Facebook, Sharlie, had her heart and lung transplant yesterday.

I was telling Tin Man about it and Sugar Pea over heard us.  She told me that she was happy and very sad at the same time.  She's happy that Sharlie got her new heart and lungs, but she's sad at the same time because so many people are getting their transplants and daddy isn't.

She knows what goes into finding a match and all that, but its the rare blood type that she's just not grasping.

Since Tin Man is B- they told us to expect a 2 - 3 year wait, which is one reason they decided to put him on the list when they did.  Since he's still doing pretty good (considering how bad his heart looks) they figured it would give us the time to wait it out instead of waiting until he was really bad off and then not getting one in time.

We've explained this to the kids, the cardiologists have explained it to them, and even the transplant surgeon they met with explained this.  Warrior understands it, no problem, but Sugar Peas can't wrap her head around it.

So I ended up with her in my bed last night because she's so upset.  She told me that she feels like a bad person because she can't be 100% happy that someone else got their transplant because she's still so sad that her dad hasn't gotten his yet.

I wish she had other kids to talk to about this.  I tried to take them to a local support group for kids with ill parents, but it was mainly kids whose parents have cancer and both Warrior and Sugar Pea told me those kids don't understand how they are feeling.

I asked social worker #6 or #7 about a support group at the hospital, and they told me that the don't have one for kids whose parents are waiting for transplants.  They only have them for kids who are waiting for transplants.

I've though about trying to start one, but the hospital is over an hour and half away and there wouldn't be much response for it in this area.

I've tried taking the kids to someone that they can talk to but the 3 people we've gone to, neither of the kids liked them and refused to go back.  That's one bad thing about living in a smaller town is there isn't many people to choose from.

Tin Man has an appointment with the kidney doctor on Tuesday and I've emailed and requested a meeting with the new social worker to see if she might be able to help us with the kids.

That's the only complaint I've had through this whole journey is the number of transplant social workers we've had and also that they don't seem to do much except constantly remind us that we need to do a lot of fundraisers.

Somedays I wish I could go to bed, sleep for a few days, and wake up finding out this was all a bad dream.

Lets Pile on More Stress

When it rains, it pours.

The last couple of months we've been stressing out about insurance.  We've been told by several people around town that Tin Man's boss is talking about doing away with the health insurance.  Yet he's not said one word to us.  We have until June to find out if this happens, but we've been stressing and trying to figure out our options and what we need to do to keep Tin Man on the transplant list.

Last Wed the first of several bills from the lastest heart cath came.  We've been fighting with our insurance trying to explain why Tin Man has so many done, but they are refusing to pay them now.  Let me tell you, heart caths are not cheap!

Then on Friday we got some even more stressful news about Tin Man's job.   We are hoping this was just his boss throwing a tantrum and it will pass, but we're trying to come up with Plan B.

Then on Saturday we were on our way to San Francisco with Sugar Pea's Girl Scout troop to see the Chinese New Year parade.  45 minutes into the trip our heater starts blowing out cold air.  By the time we got to a place where we could pull off the road, we were over heating.

The resevoir for the radiator cracked and all the water leaked out.  Even worse than that is we blew a head gasket.

This means $$$$$ to fix the car that we really don't have. 

Here's to hoping that there's no more added stress for a while.

My Memories Giveaway Winner

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If you use the code STMMMS56552 you get a $10 discount off the purchase of the My Memories Suite Scrapbook software and a $10 coupon for the MyMemories.com store - that's a $20 value!


The winner for the giveaway was #17  KIM S.   Please contact me if you haven't already gotten my email.

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.

Need More Awareness for Congential Heart Defects

Congenital Heart Disease is considered to be the most common birth defect, and is a leading cause of birth-defect related deaths worldwide. Despite the fact that CHD affects approximately 1.8 millions families in the U.S.,  a relatively small amount of funding is currently available for parent/patient educational services, research, and support.

Awareness needs to be brought to CHDs not only for all these amazingly strong kids, but also those kids that have now become adults.

Tin Man was born with a CHD known as Transposition of the Great Arteries.  He saw his pediatric cardiologist until he was 22 when the doctor retired.  After that it turned into a fight to find him a cardiologist.  He was always told the same thing.  They didn't know how to treat him and weren't comfortable taking him on as a patient.

It wasn't until he was admitted to the hospital for Congestive Heart Failure that he was assigned a doctor.  That doctor wasn't comfortable having Tin Man as a patient and made sure we knew that.  He tried referring us to UCLA, but they told us he wasn't sick enough to be there.

In 2008 we moved to a smaller town.  We had to start all over again to get a cardiologist.  Again we were told the same thing.  They weren't comfortable and he should go to Stanford, but no one would give us a referral.  Again it took him being in the hospital with CHF to get a referral for Stanford.

One of his doctors at Stanford is a pediatric cardiologist that decided to take on adult CHD patients once a week.

He told us that there are so many of these kids growing up, but very few doctors that know how to handle them.

Awareness needs to be brought to CHDs so more funding, research, and more doctors will be available.

My Memories Digital Scrapbook Software Giveaway!

A few years ago a friend turned me onto digital scrapbooking.  I was hooked instantly. I also loved that I didn't have to find storage room for scrapbooking supplies.  Every free moment I had I spent doing page after page starting with Warrior as a baby and on up.  Then we moved and with getting settled up here and then Tin Man getting sick, I never found the time to get back into it.

So when I was asked to review the My Memories software, I was more than happy to.  When I checked out their website I was amazed at the huge selection they had.  Not just kits they have for sale, but the number of free kits they have too. On just the first page I found several I wanted.

After downloading the software I just jumped right in.  I was amazed at how easy it was to use.  The software comes with very simple backgrounds and embellishments, but like I said there are a ton of templates and kits on their website.  You also have the option of using one of their templates or your own design.  Plus you can create calendars.

I've been playing around with it for the past couple of days and have made a few different pages.  This page I made for Sugar Pea's birthday.  I used the simple background and embellishments that came with the software.

This page I made for a day out last May.  This one is made with one of the kits for sale at My Memories.

Sugar Pea was sat next to me giving me her input on pages for her.  I decided to let her have a go and see what she came up with.

She decided to do a February calendar so she can see what all we have going on this month.  She loved it and was able to do it most of it without any help, that's how easy it was.

I highly recommend checking out My Memories Digital Scrapbooking software for yourself.  If you use the code STMMMS56552 you get a $10 discount off the purchase of the My Memories Suite Scrapbook software and a $10 coupon for the MyMemories.com store - that's a $20 value!

Now to the best news!  I've been given a copy of the My Memories Digital Scrapbooking software to give away to one lucky reader!  To enter all you have to do is head on over to My Memories and leave me a comment telling me your favorite, or 2, kits.




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