Can't Wait!

I can't wait to take my little boys to their first football game on Thursday night!
The Panthers are playing the Steelers, which happens to be Caleb's favorite team. I am not sure why he loves the Steelers so much, but he does...

Graysen's First Fishing Experience

This week Graysen and I hung out with some friends fishing at their lake. It was Graysen's first time fishing and he was all into it!

I caught the first fish of the day. Notice, there are no pictures of me with the fish. I have a true phobia of fish and could only reel it as far as the surface of the water. After that, the risk of it swinging and touching me was too high to risk. Here is Graysen holding Mommy's fish!

Sadly, we did catch one turtle. It broke my heart to see the little guy hanging on the end of the pole. He looked too much like my parents' pet turtle, Stuffin', that wonders around the house like a pet dog instead of living like a pet turtle.

It was a very peaceful and nice day by the lake spent with fun friends.

A Conversation

I took the boys to A&W last night for dinner and floats.  This was the conversation on the way home:


Me:  Boys, when we get home, it will be time to put your jammies on and go to bed.

Caleb:  They're not "jammies". They're "PJs."

Me:  Some people like to call them "jammies."

Caleb [agitated]:  No, they're "PJs!"

Me:  Caleb, sometimes other people like other things, and you have to respect that. You can't get upset about it. Some people like this, some people like that, and it is best we just relax and not worry about it.

Graysen:  I like hummus.

Palmetto Hearts 5K Run & Walk Update

I plan to update my blog every time that there is a Palmetto Hearts 5K Run & Walk organizational meeting so that everyone has the most up to date information on the event.

There is a wonderful team of people working hard to put this event together and I am so blessed to have each and every person on the team.

The event is scheduled as follows:

Palmetto Hearts 5K Run &Walk

presented by

Spartanburg Running Club

Saturday, April 14, 2012

9:00 AM

Duncan Park, Spartanburg

Registration will be $25 per person. Children 13 and younger are free. All proceeds go directly to Palmetto Hearts and will benefit the families of children with CHD's. The registration fee is tax deductible.

Every paid registration will include:

Entry into the 5K Run & Walk

Event T-shirt

Entry into a raffle

Prizes will be given to the top three finishers in each age group, with divisions every five years.

Family is encouraged to come to the event to cheer on participants and enjoy the festivities.

We are working on a dedicated web page for the race and hope to have it up and running in October. Registrations will be accepted beginning in January.

We are currently seeking corporate sponsors. Please contact me if you know of a company who may be interested in sponsoring the event. The corporate sponsorship information is as follows:

Sponsorship Levels

Friends of Palmetto Hearts (Up to $500)

• One free registration
• Name on flyer
• Can put one promotional item in goody bag, if desired

Silver Lining ($500-$999)

• Two free registrations
• Name on flyer
• Small logo on t-shirt
• Logo on 5K race webpage

Hearts of Gold ($1,000-$4,999)

• Three free registrations
• Name on flyer
• Medium logo on t-shirt
• Small logo on Palmetto Hearts home page through December 31, 2012

Platinum ($5,000+)

• Six free registrations
• Name on flyer
• Large logo on t-shirt
• Medium logo on Palmetto Hearts home page through December 31, 2012
• Logo on banner
• Logo on race advertisement In Spartanburg Herald Journal

I am happy to announce that Greenville Hospital System Department of Pediatric Cardiology has pledged sponsorship at the Platinum level. I hope that many companies will follow with sponsorship.

Palmetto Hearts is the only organization in South Carolina dedicated to assisting families affected by CHD. I can not say enough about how much this organization helps with support and financial assistance during this traumatic time for families. From personal experience I can attest to the fact that CHD affects the entire life of the family, in addition to having to worry about the health of the child.

Palmetto Hearts is a grass-roots organization that lives hand-to-mouth. Every dollar given makes a large impact on the ability of this organization to help families. The organization is volunteer-only and does not have any paid staff positions. This is further evidence to me that Palmetto Hearts is completely dedicated to helping families to the utmost of their ability.

Please mark your calendars now to come out and support these special families, strong children, and this great organization!

Kindergarten

Well... My precious little baby is off to his first day of Kindergarten. I can tell that he is excited about this new adventure.

We are very blessed that Caleb is able to go to Spartanburg Charter School for kindergarten through eighth grade. SCS differs from standard public school in that it uses a Reggio-Emilia education philosophy and unique teaching methods such as inquiry-based learning, single gender classes, and Intervention and Advancement Teams.

Caleb will receive nine years of Mandarin Chinese training starting in Kindergarten. He will go to yoga every other day in addition to a regular P.E. period. He will also receive Character Education twice a week which focuses on personal and social ethics and coping strategies. There is a strong focus on the fine arts. Last year, the children had a gallery show at Hub Bub gallery complete with an opening night reception.

The school and classes are small which promotes a small community environment throughout the school.

I think that SCS is a wonderful school and am so happy that Caleb received a spot. The school very much focuses on developing all parts of the being and I think that it will be a great start to his academic and professional life. Can you not tell that Mommy is very excited about SCS?!

Palmetto Hearts 5K Run & Walk

A friend of mine caught that I put the wrong date for the Palmetto Hearts 5K Run & Walk when I announced it on my blog. The corrected event details are as follows:

Palmetto Hearts

5K Run & Walk

Presented by the Spartanburg Running Club

Saturday, APRIL 14th, 2012

9 AM

Duncan Park

Spartanburg, SC

More details will follow. This will be a family event and both runners and walkers are encouraged to attend.

Please save the date and come to the event to support families with heart children!

More Pictures from Virgina and DC

Even more pictures can be found on my Facebook page. You don't need a Facebook login to see the pictures.

The garden at Monticello

The boys waiting patiently at Monticello

Laura and Erica at the US Capitol

The rotunda

Caleb touring the Capitol

Erica and Kevin touring the Capitol

Caleb and a tricerotops at the Natural History Museum

Caleb, Graysen, and a diorama at the Natural History Museum

At the hotel room, playing with their spoils from the Natural History Museum gift shop

I found them this way in the middle of the night.

At the Air and Space Museum.

At the Air and Space Museum.

At the Air and Space Museum.

At the Air and Space Museum.

View from the observation tower at the Air and Space Museum

Cardiology Appointment

Graysen had a wonderful cardiology appointment today. He was an angel the entire time and allowed the echo technician to get great pictures of his heart.

His heart looks very healthy! The main concern at each appointment for Graysen has been the narrowing in his right pulmonary artery. The pressure gradient over the narrowing was measured at 10 today. (Ideally, the number should be zero.) That is the best that it has ever been! "Mild" is defined as 0-25, so Gray looks absolutely amazing! His next appointment isn't until February.

Clarification

As clarification, we're pretty sure that Graysen thinks Obama is a superhero, or maybe a knight. All he really knows is that Obama is important and lives in a big house that is hard to get close to. Sounds more light a knight to me.

On our DC trip, I bought Caleb a road atlas, and I told Graysen I would buy him something special too. I never found anything appropriate. So this was a DC-themed makeup gift.

How Many Parents Order *THIS* for Their 3 Year Old?

Graysen is obsessed with Obama, so Lee ordered a special present for him.

Another Good TGA Surgery Video

Heart Education--Transposition

Graysen has a cardiology/echocardiogram appointment tomorrow morning. So, I have had TGA-PA on the brain all morning.

I was inspired by other heart blogs to see if I could find educational videos on TGA-PA, specifically from Children's Hospital of Philadelphia (CHOP) which has videos on different types of Congenital Heart defects.

I found a six video series on TGA by CHOP. It is a great series and helps explain TGA in a simple way.

Part 1: I did not post because Gray does not have simple TGA.

Part 2: Good description of a "normal" heart and fetal circulation.

Fetal circulation allowed Graysen to be "safe" as long as he was in the womb. Doctors kept him alive for nine days after birth by using a drug called prostaglandin which forced the ductus arterious to stay open when it would have closed within 24-48 hours.

http://youtu.be/FVDvrUL7LgQ

Part 3: Good description of TGA. Gray's "mixing" occurred at the ductus and VSD.

http://youtu.be/D58eufx-_4Q

Part 4: Stabilization after delivery.

This video explains why babies are not rushed to the OR upon birth. Doctors take a few days to fully diagnose the defect and stabilize the baby.

http://youtu.be/0Ka9OJAGgJo

Part 5: Arterial Switch surgery. This is the preferred method of "fixing" TGA. Unfortunately, Graysen was not a candidate for this surgery because he didn't have a pulmonary artery. You can't "flip-flop" something that is not there. Instead, he received a more complicated and rare surgery called the Rastelli Procedure.

The aorta is not moved in the Rastelli Procedure. It is left in the "wrong" spot. The VSD is closed in a manner (using pericardium) that cuts the right ventrical in two, adding part of it to the "left" ventricle while encompassing the un-moved aorta.

Thus, the "left" ventricle becomes roughly 1 1/2 sizes and the "right" ventricle roughly 1/2 size. Doctors use a Contegra bovine conduit (jugular vein from a dead cow) as a pulmonary artery and it is sewn onto the bottom of the "right" ventricle.

Graysen's heart is never "fixed." It does not look like a normal heart but functionally does the same thing.

Graysen's "Rastelli" surgery took over six hours and is not comparable to the Arterial Switch procedure. I shared this video because it discusses some of the complexities of heart surgery. There is very little information about the Rastelli procedure on the internet because it is rare.

http://youtu.be/sqfMNwEagWw

Part 6: Life expectations.

A lot is unknown since these babies are just now getting to be adults. Graysen will need further intervention because his bovine conduit does not grow as he grows and will need to be cleaned out and replaced periodically.

http://youtu.be/Z-2xZPY0wN8

Now you are all experts on Graysen's condition! You can also see why Graysen is exceeding all medical expectations.

Graysen is incredibly strong and I am expecting a good report tomorrow at the doctor's office.