The Adventures of Alexander Steven: 2020

We hope everyone has been staying safe and healthy during these challenging times. Alex had his MRI over the summer and it was decided to wait a little longer before intervening to give his pulmonary artery time to grow. He had another echo in October and his cardiologists decided to proceed with a cath in January. Alex heads back to the cath lab on January 11th with the hopes of placing a more permanent stent in his left pulmonary artery, that will grow with him. This would mean less visits to the cath lab in our future!

The boys have been enjoying their time at home. While Ben is in kindergarten virtually, Alex spends the day with our nanny. He continues to enjoy pretend play creating pet stores, restaurants and schools. He also loves playing fireman and police officer.

While life has been very different lately we have been fortunate to still enjoy some of our annual activities like apple picking and Boo at the Zoo! We have been embracing all the time we are getting to spend together and creating our own fun at home!

We plan to stay home for Christmas this year and while we are sad we are unable to see our family and friends we are grateful we can stay safe and healthy. The boys are very excited for Christmas as our elf, Mo, returned last week and they were able to have their own small tree upstairs.

We hope everyone has a wonderful holiday! Stay safe and don't forget to wear your mask!

Love,

Bobby, Erica, Ben and Alex

Snacking!

Pulse Ox without Screaming lol

Staying still like a big boy!

We Voted!

Chase and Dash!

Boo at the Zoo!

Brothers

Our First Hike

Ben's Favorite: George Washington @ Valley Forge

Jammy Bros

Welcoming the Fall

Apple Picking

New Ornaments!

Their Own Tree

Merry Christmas Everyone!

Hello all,

It truly has been one long endless summer. Since we last posted, the boys have been experiencing daddy day camp every day. Needless to say, I am pretty exhausted by the end of every day. There has been many rounds of uno and guess who, walks, adventures in our backyard, crafts, and movie Fridays. While the boys are playing at home, Erica is tirelessly on the frontlines of the pandemic, dealing with many young patients who are symptomatic. The men of the house couldn't be prouder of her! Luckily she was able to sneak away for a week, in which we were able to visit both of our parents for the first time since March. In New Jersey, Ben and Alex loved swimming in Nanny and Pop-Pop's pool, riding their scooters in the cul-de-sac, and playing dress up with old Halloween costumes. In Delaware, Ben and Alex loved visiting Grandma and Pappy's new beach house for the very first time, going to the beach (even though Alex was very apprehensive about the water this year), going on walks, and playing the Wii. The boys had a blast with their grandparents and it truly was bittersweet to say goodbye for now, after a few days. Now for the medical update.

We are pleased to report that Alex was a trooper during his visit to CHOP for his cardiac MRI on June 25th. He wore his mask for the entire visit, without any complaints, and got through all of his testing with flying colors. The results of the cardiac MRI showed decreased blood flow to the left lung, but showed normal heart function. With this result, we had expected to hear that Dr. Rome would want to perform an intervention late this summer. However, we were happy to get the news that Dr. Rome believes that Alex is stable enough to postpone intervention until late winter or early spring. His hope is that the left pulmonary artery will have grown enough at that given time to place an adult stent into the artery that will grow with Alex. This would allow for fewer interventions in the years to come!

We hope everyone is staying healthy and enjoying their socially distanced summers. Please continue to protect not only yourself, but everyone you come in contact with by wearing your mask!

Love,

Bobby, Erica, Ben and Alex

Lounging in the pool!

Homemade treasure maps!

At the farm.

Our Heart Warrior all smiles the day before his cardiac MRI!

Mask on...No complaints!

Ben loves the pillowcase his little brother chose! (For those of you who do not know Ben is obsessed with 1000 piece puzzles and has completed over 20 since last August)