Chapter 36: Cardiology and Developmental Updates

Happy Fall to Everyone!


Alex has been doing well since his last cath and ear tube placement. We have had a few appointments in the last month and wanted to give some updates.


Last month Alex had his annual cardiac kids developmental follow up. He spends about an hour with a neuropsychologist who tests all areas of development. He scored in the Average to High Average range, doing really well in the language area. We don't have to go back for 2 years!


This week Alex followed up with his cardiologist and had an echocardiogram. Thank goodness for Daniel Tiger, Alex laid on me and watched Daniel Tiger for the whole hour that they did the echo. He fussed a little in the beginning but then was awesome. He continues to not be a fan of getting his vitals done when Mommy is around but eventually we completed everything. We even tried doing everything on Will (his doll) first, but that didn't work. The echo showed things were stable, they were able to see flow through the left pulmonary artery and some of the stent fragments (that were broken open in the cath). Alex's cardiologist is confident we can wait 6 months before following up with another echo because of how things have been progressing. It will be a little strange not following up in 3 months like we usually do but we are very excited not to have to travel to CHOP as often.


We have been having lots of fall fun the last couple of weeks. Hoping for an uneventful fall and winter. And hopefully we don't have another update until the spring!


Love,
Bobby, Erica, Ben and Alex

Eating lunch in the cafeteria

Enjoying a little treat before the appointment

Boo at the Zoo

Pumpkin Picking

Chapter 35: Oh the Places We Will Go: Cath Lab Edition #4

Alex did very well today, he took some time to warm up but then was very cooperative for most of the day. The ear tubes went in without a problem and done in about 10 minutes. The cath went smoothly as well. Dr. Rome was able to break open the stents that were already there as there was some growth of the artery. His goal is to eventually put in a stent that will grow with him, but he wants the artery to be a little bigger. We will follow up with cardiology in a few weeks and come up with a plan.

Alex enjoyed all of the food today, especially the ice cream! He went on many walks and was able to explore the playroom today! It has been a very long day so hopefully we all get some rest tonight.

Enjoy some pictures from the day!

Love,
Bobby, Erica, Ben and Alex

Chapter 34: Back to the Cath Lab

Since our last update we have been busy with the end of school and the start of summer. As planned, Alex's cath is coming up on Monday July 8th. He will also have a new set of ear tubes placed first. We haven't had a cardiology visit since the last update so we aren't totally sure what the plan will be for the cath until Monday morning. He hasn't had a cath for a whole year so we are a bit nervous, but hoping for some growth of the left pulmonary artery!

We have been enjoying the summer so far with a few day trips to Philly. 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 with Erica's family!

Like clockwork, Alex was sick last week on our vacation with a fever and cough. He's doing much better now, but keeping him in a bubble until Monday! We will be sure to update once the procedures are over. We appreciate all of the thoughts and prayers.

Enjoy the pictures below!

Love,

Bobby, Erica, Ben and Alex

Heart Walk

Team Alexander

Franklin Institute

Best buds

Chapter 33: This is TWO!

We can't believe Alex is two years old! His personality is really starting to shine through. He is talking a lot now. One of our favorites is "I don't know" when you ask him pretty much anything. Alex continues to admire Ben and has to do everything he does. He has recently started jumping a lot and has a new found interest of hiding under the table. He still loves dress up, going "shopping", taking care of his babies, reading books and is becoming more interested in arts and crafts!

He still weighs in at just under 22 lbs, we are hoping he hits the 22 mark at his well visit this week. He continues to eat portions similar to ours so we aren't quite sure where it's all going.

We were excited to participate in the third annual Philly Spin-In, helping to raise over $557,000 for CHOP cardiac research and care.

We finally received the MRI results and learned that the flow to his left pulmonary artery is only down a little from his last cath and even more exciting the artery beyond the stent has grown! This is huge for long term growth potential. This also means no cath lab until the summer! He does however need a new set of ear tubes, so hopefully we can get that done as soon as possible.

We will be participating in the Children's Heart Foundation Congenital Heart Walk next month at the Philly Zoo! It's a great day to raise money and awareness for CHD and also enjoy a fun day at the zoo! Please consider joining us on Saturday May 11th. All the details and how to register can be found at our team website: https://www.walkforchdresearch.org/philadelphia/TeamAlexander.

We are really hoping spring weather brings less germs around here! It has been a rough winter.

Enjoy the pictures!

Love,

 

Bobby, Erica, Ben and Alex

Philly Spin-In 2019

Yoga!