The Adventures of Alexander Steven

Thursday, April 14, 2022

Chapter 41: This is FIVE!

It has been awhile since we last updated. Alex turned 5 on April 6th! He had a great day at school and we had a good night celebrating with McDonalds, cake and presents! We recently had a follow up appointment with Alex's cardiologist at CHOP. He had an echocardiogram which showed everything is stable from the last cath when a new stent was placed. He was cleared for another 6-9 months! Alex does really well now with his vitals, EKG and echocardiogram. We were also able to get him his first COVID vaccine on the same day! He then also celebrated his 5th heartiversary this week!

He has been doing really well in pre-K and is ready for kindergarten in the fall! He can write his name without any help and knows a bunch of other letters and numbers. He also just started soccer, playing on an actual team now. He still loves to dress up and is obsessed with penguins!

We are very excited for all of our fun trips planned this summer including visiting Grandma and Pappy's beach house and a trip to Williamsburg, VA with Nanny and Pop Pop. The boys also have a week long theater camp they are doing together.

Next month Team Alexander will be participating in the CHOP Philly Spin-In again. We are very close to our goal and just need a little more in donations so we can ride 2 bikes! If you would like to donate click on the link below: https://chop.donordrive.com/index.cfm?fuseaction=donordrive.team&teamID=11346

We hope everyone has a great rest of the school year and a wonderful summer! Enjoy all the pictures!

Love,

Bobby, Erica, Ben and Alex

COVID shot #1!

fixing my arm

Dr. Alex Cucinella

my little explorer

Heart of gold for his 5th heartiversary

Monday, January 11, 2021

Chapter 40: Oh the Places We Will Go: Cath Lab Edition #5

Alex did very well today. He didn't complain once about not being able to eat this morning. He also allowed the nurses to do all of his vitals without any complaints! He did not want to take the "giggle juice" medicine to help make him feel sleepy and the little bit he did take ended up coming back up. He wasn't as sleepy as he normally is when heading back, but he still laid calmly when they wheeled him back and we said our goodbyes without any tears.

Everything went well in the cath lab. Dr. Rome was disappointed because his left pulmonary artery didn't grow as much as he would have hoped. It was quite narrow in one part so he ballooned it open and then placed a stent that will be able to grow with Alex. The hope was that this would prevent frequent caths although it looks like we will still need to follow it pretty closely for the near future. When they were extubating him he did have some bleeding from the breathing tube and his chest X-ray looked hazy on one side so for a few minutes they thought he would need to recover in the ICU. However, the bleeding stopped very quickly and his chest X-ray improved a little so they felt comfortable keeping him in the recovery unit.

For the first time ever he stayed drowsy and mostly sleeping for his entire 4 hour flat time! He did have times where he woke up and was a bit agitated, but they gave him a little more medicine and he was able to stay relaxed the whole time. He has been doing well since he woke up. He was able to watch Frozen and have some snacks, do a puzzle, color, read books and even play a card game!

They repeated his chest X-ray this afternoon and things look stable. The plan is to perform a lung perfusion scan in the morning before discharge. This will allow us to see where the blood flow in the pulmonary arteries is at now; that way in the future we will be able to do another scan to compare.

Hopefully we have a restful night and can leave before lunch time tomorrow. Enjoy some pictures below from today.

Love,

Bobby, Erica, Ben and Alex

Loving his new pillowcase!

Waiting to go back for his cath

Watching Frozen

Yummy Dinner

Puzzle time!

Coloring

Sunday, December 6, 2020

Chapter 39: Back to the Cath Lab

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