Home Sweet Home To Me!

It is no secret that our family loves the Tennessee Volunteers and that we consider East Tennessee our second home.

At the beginning of September, we were asked if Beads of Courage could use one of Tucker's 4 year pictures in their campaign to encourage people to carry Beads when they compete. Of course we said yes and, after doing a little research, I decided that I would try to get the University of Tennessee to participate in the program.

I had a tremendous amount of luck in this effort and the UT athletic department was very interested in learning more and possibly having some players carry Beads of Courage.

Tennessee Team Beads of Courage

Fast forward to November, where Tucker was invited by Beads of Courage and the Vols football team to attend the last home game of the season as a representative of Beads of Courage. We didn't hesitate to pack our bags and head to Knoxville.

We arrived at Neyland Stadium after lunch on November 23rd for the game against Vanderbilt, the last home game of the year, senior day. We checked out some of the tailgate parties and Tucker danced to the music. About an hour and a half before kickoff, we made our way down to the stadium for the Vol Walk. We waited and watched as the coaches, players, cheerleaders, and band paraded past us ALL of them wearing Beads of Courage. Tucker got to "high-5" some of the players and coaches as they passed.

Tucker at the Vol Walk

After the Vol Walk, we were escorted through the player's tunnel and onto the field for pre-game warmups. We got to hang out on the sidelines while the players got ready for the game. There was music blaring and Tucker had a great time. He had a dance-off with Smokey, the Vols' mascot, and got to meet a few of the players. Michael Palardy, the kicker, came over and talked to Tucker for a few minutes during warmups. He knew Tucker by name and was awesome with him. Michael is definitely a favorite of ours from now on.
       

Tucker & Michael Palardy

Tucker telling Michael his age

We took a ton of pictures and made memories that will last a lifetime, doing something that not many people get to do. After warmups, we made our way to our seats to watch the game. It was a 7pm game and it was cold in Tennessee. By halftime, Tucker was very cold so we decided to watch the rest of the game from the hotel room. He was asleep before we left the parking garage. 

It was an amazing day for Tucker and for us. I don't think there is any doubt that Tucker is a Tennessee fan now and he sings "Rocky Top" almost daily.

The next day we traveled south to Whitwell, TN to see some of Dena's family. It was great to catch up with them and for Tucker to get to see where his Papa grew up.

It was a fast trip that covered a lot of miles, but it was worth every minute of it. We left Texas on Thursday afternoon and were back at home by Monday night.

We are very excited to know that every single Bead that was carried that night will give enCouragement to a child fighting CHD or cancer. Tucker's story helped make it happen and he continues to get to bless others.

Tucker meeting Smokey

Tucker & "The Real" Smokey

We are eternally grateful to Ashely from Beads of Courage and Antone Davis and the University of Tennessee Athletic Department for making it all possible. 

"Rocky Top will always be home sweet home to me!"

~Trent

It’s Just a Heart Cath…

It’s just a heart cath. I can’t tell you how many times I’ve heard that phrase come from the mouth of a heart parent. I can’t tell you how many times my wife and I said it in the months and weeks leading up to my son, Tucker’s (Hypoplastic left heart syndrome, HLHS), heart cath on May 22^nd.

A heart cath, or cardiac catheterization, is a procedure in which doctors insert a catheter and guide wire into a major blood vessel and move them until they reach the heart. Most heart caths originate in the groin and enter the heart through the femoral artery. Once the catheter is in place, the doctor uses a dye and fluoroscopy (real time x-ray showing movement) to get a very accurate picture of the heart and surrounding blood vessels. In kids with congenital heart defects (CHDs), heart caths are typically used as a diagnostic tool prior to surgery or to make smaller repairs. In Tucker’s case, the heart cath was used to make sure everything looked good in his heart prior to having open-heart surgery on June 18^th.

A few days before Tucker’s procedure, I found myself thinking about the phrase, “It’s just a heart cath.” To most parents, it wouldn’t be “just” a heart cath, it would be something big! To most parents of kids with CHDs, it is a fairly minor part of their treatment.

When you compare a heart cath, which usually is a one day affair, with an open-heart surgery, it’s not that big of a deal. But it really all comes down to a matter of perspective. Many CHD parents experience numerous surgical procedures during the course of their child’s treatment. Heart caths usually occur before these surgeries. Most don’t require an overnight stay in the hospital. There are, relatively, few risks involved. Heart caths are just part of the process, like echocardiograms and cardiologist visits.

To a parent of a child with a more “minor” CHD, a heart cath may be the only procedure that they ever have. Some heart holes can be repaired during a cardiac catheterization. To a parent of a heart healthy child, a heart cath would probably be a very big deal. Prior to having Tucker, if you had told me that my child would be put to sleep, taken to a surgical room, have a wire fed through the largest artery in his leg into his heart, and then have to remain completely still for several hours after waking up, I would have freaked out. Now it’s “just a heart cath!”

Perspective is an important thing. Things that are a big deal to one parent might be minor to another. We don’t always know another person’s story or experiences. Tucker’s HLHS is a more severe form of CHD than a simple hole in the heart, but that doesn’t mean that a child with that defect is any less important or significant than Tucker. His or her parents aren’t any less of a CHD parent than Dena and I. Many CHD parents get wrapped up in our world and we sometimes try to compare our lives to the lives of parents dealing with other childhood disorders. We get frustrated because childhood cancer gets more attention and funding than CHD research and prevention. But it’s not a competition. They are both tragic. The kids and the parents from both sides go to hell and back. Lives are lost to both. It’s all about perspective.

Tucker’s heart cath went very well. The doctor said that his heart looked as good as possible for a child with HLHS. The pressures in his heart and blood vessels were in the correct range and he was cleared for surgery. He was a little feisty when waking up from the anesthesia, but he recovered quickly. It wasn’t too hard to keep him still for a couple of hours, all we had to do was put on his favorite movie and give him snacks and drinks.

As we gear up for Tucker’s big surgery, it’s hard not to wish it was just a heart cath! He has survived and thrived after his first two surgeries and there is no reason to think differently about this next one, but it is still tough to prepare ourselves for it. When I start to feel a little overwhelmed about everything, I think about the families wishing for a surgery to fix their child’s problem or the families who are making funeral arrangements. I wonder if they would think, “It’s just a heart surgery!”?

Perspective…

~Trent

Dads Should Go Back to School

I am an educator. To be more specific, I am a principal, but I was a teacher for 5 years and I still teach a few classes each year.

I work with students every day, both inside and outside of my office. Unfortunately, many of the students who come to my office come back multiple times. There is a common thread among many of the repeat offenders; they don’t have a dad in their lives or, if they do have a dad, he isn’t involved with school.

Research shows that children who live in two-parent families are more likely to get mostly A’s, regardless of the level of the mothers’ involvement. Children who live in single-parent families headed by fathers are twice as likely to get mostly A’s if their fathers are highly involved at school, compared with those whose fathers have little involvement. Even with non-custodial fathers, when they are involved, they make a difference, particularly for children in grades six and above. Their children are much more likely to get A’s, enjoy school, participate in extracurricular activities and are less likely to repeat a grade.

Sadly, despite the benefit of having dad involved at school, most dads leave the “school stuff” to mom. Even in two-parent households, moms are about twice as likely to participate in school meetings, events, and activities. Dads can have a lasting effect on education by helping to set expectations and by challenging their kids.

I admit that schools are usually more welcoming to mothers than fathers. There are definitely some things that can be done to encourage more participation from dads, but it ultimately comes down to dads making the time to be involved.

Here are some tips and simple things that you can do to get more involved in your child’s education.

1. Save a sick day or vacation day to attend a school meeting or teacher conference.
2. Email or call your child’s teachers to check on their progress and see if you can help with anything.
3. Attend a “donuts for dads” or similar event when they occur.
4. Join the PTA and attend meetings/events.
5. Organize a group of dads to complete a school improvement project.

Probably the easiest and most impactful thing that you can do is to ask your kids what they learned at school and make time to help them with their homework or read to/with them. You don’t have to be an algebra genius or scientist to help your kids. Just reading to or with your children each night can have a dramatic effect on them. Twenty-six percent of children who were read to three or four times in the last week by a family member recognized all letters of the alphabet. This is compared to 14 percent of children who were read to less frequently. Fourth graders who reported reading for fun “Almost Every Day” score 3 percent higher on reading tests than peers who reported reading “Never or Hardly Ever”.

It's the little things that make a difference in your kids' lives. Do the little things and you can make a huge difference.

~Trent

70 Days...

The countdown is on...

In case you don't know, that means that we are only 70 days from Tucker's 3rd open-heart surgery. 

Back in March 2010, when Tucker had his 2nd surgery, this 3rd procedure seemed so far away. Now we are just over 2 months away. He will have his pre-op heart cath on May 22nd. During the heart cath they will check his heart and the pressures in his blood vessels to make sure that his body is in good shape for surgery. They will also look at the anatomy of his heart to begin to plan for the procedure. The heart cath is a fairly simple experience and he shouldn't have to stay in the hospital overnight afterwards.

On June 17th we will go to the hospital for his pre-op physical exam, bloodwork, and meeting with Dr. Mendeloff, the surgeon. Tucker will also get to spend some time with the child-life specialist where she will explain the surgery to him and let him pretend/play in the mock operating room. Dr. Mendeloff will walk us through the surgery and answer our questions. Pre-op days can be very long, but it is necessary.

The next day, June 18th, we will hand Tucker over to Dr. Mendeloff for the 3rd time in his short life. He will stop Tucker's heart and complete the "repair". The 3rd procedure, the Fontan, involves completing the re-routing of Tucker's heart circulation to eliminate the mixing of oxygenated and deoxygenated blood. The recovery time can be a week or two or several months, this all depends on Tucker. We are already praying for God's blessing on this surgery and Tucker's healing.

So, 70 days...it will be here in no time at all!

The heavy stuff aside, I wanted to share a few things that have happened for us since my last post (which has been too long).

Finn is now 11 months old and growing and learning quickly. He is now crawling and cruising around the house pretty well. He also got tubes in his ears last month after too many ear infections!

Tucker continues to surprise us daily with something new that he has learned. He is very bright and after being tested by special education diagnosticians, has been deemed ahead in many areas, academically. We had him tested because we had observed some possible speech issues and also to establish a baseline for his cognitive levels in case there were complications with his surgery.

We had a great trip to the wildlife preserve in Glen Rose, Texas for Spring Break and also got to spend time with our family for Easter.

I'm sorry if this seems like scattered/rushed post, but its just what was on my mind tonight. Enjoy some pictures and video of the boys.

Wagon time

Tucker with his friend the zebra

Tucker - 10 months old                     Finn - 9 months old

Brotherly love!

Tuck & Finn - Easter 2013

Maddie, Tucker, Beckett, & Finn - Cousins

Tucker picking up his NASCAR tickets

Tucker's 1st NASCAR race

Ready to roll

Smiley!

Balloon boy

Crusing

Wishes for CHD Kids

Did you know that most CHD kids qualify for the Make-A-Wish program? If you didn’t know that, you are not alone!

Our local support group, Amazing Little Hearts, had a representative from Make-A-Wish at our meeting this past week. He shared about the program and answered all of the parents’ questions. Since not everyone is familiar with the program, I wanted to share what we learned with you. Hopefully, the information below will help you understand Make-A-Wish a little better and answer any questions that you might have.

• Any child between the ages of 2 ½ years and 18 years, that has a life-threatening condition, is eligible for Make-A-Wish. Children must be referred and determined to be medically eligible in order to participate. The final determination for medical eligibility is determined by the child’s treating physician.
• Most complex CHDs qualify as a life-threatening condition. These include, but are not limited to, Hypoplastic Left/Right Heart Syndrome, Double Inlet/Outlet Left/Right Ventricle,Transposition of the Great Arteries, Tetralogy of Fallot, Pulmonary Atresia, etc. If you aren’t sure if your child’s CHD qualifies, consult your pediatric cardiologist.
• Referrals for Make-A-Wish can be made by parents, doctors, nurses, and even social workers. Basically, anyone who has direct knowledge of the child’s condition and has a role in the medical care for the child can refer. MOST referrals are made by the child’s parent, but medical eligibility still must be confirmed by the child’s doctor.
• To refer your child, go to www.wish.org and click on the “Find Your Local Chapter” button on the top, right side of the page. Select your state and then find the office that is closest to your home from the list. Call the number and they will walk you through the referral process. You can also have them send you a referral packet in the mail, but the quickest and easiest way to refer your child is over the phone.
• Some of the information that they will need from you during the referral process is: Personal contact information for parents/guardians, contact information for the child’s treating physician (usually cardiologist for CHD children), general information about the child’s condition or defect, information on any upcoming surgeries or treatments, any physical limitations, handicaps, or special equipment for the child, and an idea of what the child’s wish might be.
• Despite what you might have heard, Make-A-Wish is NOT just for kids who are terminally ill. While children who are terminally ill may receive expedited services from Make-A-Wish, your child does not have to be dying to be able to make a wish. Remember, ANY child with a condition that has or does threaten their life is eligible for a wish. In fact, most children who are granted a wish go on to live happy, full lives.
• Most wishes fall into one of four categories: “I want to be…”, “I want to go…”, “I want to have…”, “I want to meet…”
• The average cost of a wish is $7,500. It is the goal of Make-A-Wish for a child’s wish to cost the family nothing and to have zero impact on the financial situation of the family.
• Make-A-Wish goes to great lengths to ensure that the wish that is granted is actually the wish of the child. They will have trained Wish-Granters meet with the child and ask, “If you could have one wish, what would it be?”

On a personal note, we got some great news last week. Our son Tucker, HLHS, has been accepted into the Make-A-Wish program. We are so excited for him, but also realize that we will be waiting for a little while for him to make his wish. Since Tucker is only 3 and he has his Fontan procedure coming up in June, it may be a couple of years before we meet with the wonderful Wish Granters. We want him to be able to truly pick something special for himself since this is a once in a lifetime experience. We also want him to remember his wish for the rest of his life. We believe that, in order to accomplish these two things, Tucker needs to be at least 5 years old before he makes his wish.

I hope that this information  has been helpful to you. Our CHD children go through so many tough times, they deserve the hope, wonder, and magic that comes with being granted a wish. I hope that you will take the time to refer your child to Make-A-Wish and that you will share this information with a friend who has a CHD child or any other life-threatening condition.

~Trent