Chapter 31: Some updates and lots of pictures for fun!

It has been awhile since our last post. Sorry for the delay. There hasn't been a whole lot to update and things have been going well thankfully.

We had Alex's cardiac kids development follow up in September. He finally reached 20 pounds! He was evaluated for about 1.5 hours checking in on all areas of development and we are happy to say he passed with flying colors. He graduated from his physical therapy several months ago. We had been watching his speech/language development which has continued to improve. The doctor was quite impressed with how he is doing and said he was above average in some areas. We don't have to go back for one whole year!

We also had a follow up with Alex's cardiologist last month. The echocardiogram showed things were stable, the left pulmonary artery is open and they can see blood flow through it. We have to go back sometime next month to get another echo and then come up with a plan for further testing or catheter procedure.

Alex is doing well. We had a great rest of the summer and are enjoying fall. We moved in to our new house at the beginning of September so things have been a little crazy! We were able to go apple picking, pumpkin picking and our annual trip to the Philly Zoo for Boo at the Zoo! The boys had a great Halloween, first time trick or treating in our new neighborhood.

We are looking forward to the upcoming holidays and spending time with our family and friends. Please enjoy all the pictures below!

Love,
Bobby, Erica, Ben and Alex

New house!

This boy loves food!

And dressing up!

First haircut

Belly!

Copying Daddy

Chapter 30: Oh the Places We Will Go: Cath Lab Edition #3

Alex tolerated the procedure very well today. He was the first case so we were up very early and at the hospital by 6am.

They placed the ear tubes first which went well. He has to continue ear drops for a few days but otherwise hopefully his ears will no longer be an issue.

The cath went well. His left pulmonary artery, while still very small compared to the right, has grown some. Dr. Rome was able to dilate the left pulmonary artery and clear out some tissue that grew within the stents. Everything else looked stable. He is staying overnight to monitor and then we have a repeat lung perfusion scan in the morning to look at blood flow to the lungs.

Thankfully they kept him somewhat sedated after the procedures which lasted almost 2 hours. So, Mommy only had to hold him flat for 2 hours. He hasn't really slept much since so hopefully he will sleep some good stretches tonight. He was starving afterward and drank 14oz of Pedialyte and has eaten a ton of snacks!

Thank you for all of the thoughts and prayers. We appreciate each and every one of them.

Enjoy some pictures from today.

Love,
Bobby, Erica, Ben and Alex

Heading Back to the Cath Lab

Loving a deep sleep 

Post-Sedation Shenanigans 

Snacks 

Snacks

And More Snacks!

Chapter 29: Back to the cath lab

Since our last update we have been back to the cardiologist and also had our first visit with the ENT.

The cardiologists wanted to move forward with a cath to see what is going on with the left pulmonary artery. At the ENT visit he still had fluid in his ears and with all of the infections he has had she wanted to move forward with tubes. Thankfully both procedures can be done at the same time on Monday, July 9th. It is the only day that both can be done in the next 2 months so we are working hard to keep him healthy until monday!

We will be sure to update once the procedures are over. We appreciate all of the thoughts and prayers.

We were also able to enjoy a week at the beach with Bobby's family in Wildwood, NJ. The boys had a great time and are looking forward to another week at the beach in a few weeks!

Enjoy the pictures below!

Love,
Bobby, Erica, Ben and Alex