Congenital Heart Walk

As many of you know, on January 29, 2013, Jackson, was diagnosed with a congenital heart defect (Transposition of the Great Arteries). That was months ago and despite some very challenging times, he is doing great! To recognize this important time in our lives, we have started Jack's Pack to benefit the Congenital Heart Walk. I would like to ask for your support by either joining the team or sending in your tax-deductible donation today! 

The Congenital Heart Walk is Saturday, September 21, 2013 at Eden Park at 10:00 am. Please feel free to come and walk for Jackson and for others with congenital heart defects. 

We'll even have fun "Jack's Pack" shirts :)

Here are just some of the facts: Nearly two million children and adults are living with a congenital heart defect (CHD) in the United States. Each year approximately 40,000 babies are born with a CHD, making it the country’s #1 birth defect. At least 10% of all congenital heart defects are first found in adulthood. Thanks to increases in survival rates, the number of adults living with a CHD rises by 5% a year and adults with CHDs are living longer, fuller lives than ever before.  Your support will continue our progress.

The Congenital Heart Walk is an exciting joint effort between the Adult Congenital Heart Association (ACHA) and the Children’s Heart Foundation (CHF)! This effort will raise funds to help both organizations continue their missions to address the needs of both the newly diagnosed and long-term survivors of congenital heart defects, in a truly inspirational day of sharing, caring and fun. 

As you know, fighting congenital heart defects for our family is personal. Please support our efforts by joining Jack's Pack for the walk on September 21, making a donation, or BOTH! 

Jackson after his open heart surgery to fix the congenital heart defect. 

Jackson today, thanks to advances in technology. These advances in technology allowed Jackson to be diagnosed in utero, which saved his life. 

Thank you for all your support! 

Love,

Ted, Amanda, Lucy, & Jackson Schwieterman

5 months!

Jackson turned 5 months old today! I can't believe how fast 5 months has gone! He had his 4 month check-up last week and weighed in at 19.5 pounds. He is quickly pushing out of his 9 month clothing and into 12 month clothing. Ted and I looked back at Lucy's info from when she was an infant. He is 3.5 pounds bigger than Lucy was at his age. 

A lot has happened since the last post. He had an appointment with the Neurodevelopmental Clinic. At this 4 hour appointment, he saw a plethora of specialities:  cardiologists, developmental pediatricians, nutrition, physical therapy, social work, etc. He came out doing very well. He's right on track for his age group. They said he did have a flat spot on his head, but that's pretty normal since infants spend so much time on their backs. They said it'll round out the more he's on his tummy and upright. 

He had his consultation for his circumcision. The doctor saw us for a total of about 5 minutes. He said Jackson has to get the okay from his cardiologist first, and then we'll schedule it. It's an outpatient procedure. They will put him under for the procedure. As long as cardiology doesn't want him to spend the night, he'll go home that day. I'm hoping we can get it scheduled this month since school starts next month. 

On Thursday, he has his big cardiology appointment. He will get an echocardiogram, an EKG, and see his cardiologist. This will be his first echo since leaving the hospital. I have to say, I'm a little nervous. I know Jackson is doing well, but I'm still nervous. I think there will always be a part of me that will hold my breath when this test comes hoping nothing shows up. 

Jackson has started rolling over. He does things his own way, he has made that perfectly clear. He started rolling from his back to his stomach. Most infants roll from their stomach to their back first. Not Jackson. He rolls from back to stomach and then back again. He has also started sleeping on his side. It looks rather uncomfortable. So we try to straighten him out and put him on his back, and he goes right back to his side. 

We've also been given the green light on starting solids. It's quite bittersweet. I'm anxious to get him started and sad at the same time. He's growing up so fast! 

Jackson made his first big trip to Folly Beach, South Carolina a couple weeks ago. He did awesome during the trip! Both the kids did great! We ended up leaving on a Saturday night at 9pm and arrived at Folly Beach about 7:30 the next morning. Driving through the night is better for kids, but it's torture for the parents. Fortunately, we were able to get some naps in since my mom was there to help. Jackson had such a great time on the beach. He ended up getting sand EVERYWHERE! We had to give him a bath after he was on the beach every single time. He loved the pool. Most of all, he loved being spoiled by his aunt, uncles, cousins, and grandparents. 

Beach Babe!  

Hanging out in the pool with his cousin Addison

Meanwhile in the Schwieterman household, we are preparing to potty train Lucy, preparing to go back to school for me, and to the sitter for Lucy and Jackson. By the time school starts, I will have been off for 6 whole months! Going back to school is not going to be easy!  

Just a reminder that the walk for Congenital Heart Defects is coming up soon! I'm a bit shy of my fundraising goal. Hoping to get some more donations by the time of the walk to at least meet my goal. If you'd like to donate, please feel free to donate to Jack's Pack. If you'd like to join Jack's Pack and walk with us on September 21, please feel free to join. The more the merrier! 

Tyson update: Tyson had his surgery on July 22. It was a successful surgery. He is now home and showing his personality off! Thank you for your prayers for him. Please continue to pray for his recovery. Like Jackson, he has a long road ahead of him. 

Some pictures from the past month...

Hanging out in his jumper

Smiley Jack :)

Ready for his mom's favorite week of the year - shark week! 

Happy Shark Week everyone!