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

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

Hamilton Family Vacation 2012

The Hamiltons, (Pops, Granny, Greg, Amelia, Trent, Dena, Maddie, Tucker, Beckett, & Finn) that is, took our annual family vacation this past week. We rented a lake house in Granbury, Texas and it was a great time! 

Granny & Pops with the grandkids!

We, mostly, just hung out around the lake house, which was literally steps from the water, but we did venture out for a few fun things.

Beckett is ready for the PGA tour!

On Thursday, we drove to Glen Rose to visit Dinosaur World and Dinosaur Valley State Park. At Dinosaur World, Maddie and Tucker got to dig for fossils and see "life-sized" replicas of about 30 different types of dinosaurs. They thoroughly enjoyed it! Tucker would run up to a dinosaur and growl at it, then he would run away saying, "Scary! He gonna eat me, daddy! Save me!" I don't think that he was really scared, he was just being dramatic and playing games because he would run up and growl at the next one on the walk. Next we went into Dinosaur Valley State Park to look for real dinosaur tracks in the Paluxy River. The water was too high to see the tracks, but Tucker and Beckett got to splash in the river and have some fun.

Tucker, in the mouth of a T-Rex

Maddie & Tucker, future paleontologists

Does he look scared to you?

Beckett & Tuck, enjoying the Paluxy river

 On Friday, we visited the Granbury city beach, which is awesome! The city sectioned off a portion of the lake from boat and fishing traffic. They also trucked in enough sand from South Padre Island to make a true beach and go out about 50 yards into the lake. It was the nicest lake beach that I have ever been to. The kids spent the day splashing, throwing sand, building sand castles, and "swimming". I think that Beckett had the most fun of all, splashing and swimming the entire time.

Granbury city beach

Beckett, the little fish!

Tucker, enjoying the water

We also spent some time attempting to catch fish. The lake house had a boat dock and a sun-deck above it. The dock was perfect for fishing and we saw lots of fish. After a day and a half of losing tons of bait, I realized that our hooks were too large. After a quick change of hooks, we started catching some fish. Maddie caught a perch, as did I, and Tucker caught a small catfish. They were so excited to catch the fish, but didn't want to touch them.

The view of Lake Granbury from the dock

Maddie, fishing woman

The sun deck

Tucker's whopper!

It was a short and simple trip, but we all had fun and were able to spend some quality time together!

Beckett giving Finn kisses

Oh, and yes, Finn was there too, but he pretty much slept the whole time!

See! I told you Finn was there!

~Trent