It has been a while since the last update, and as we always say – no news is good news! Judah has been his normal, happy, playful, hilarious self. We have been enjoying outings all summer long, trips all over town and beyond, and for the most part good health.
Back in May Judah had gone in for a heart cath procedure to take a look at the pressure in his arteries, at his implanted conduit, and his overall heart health. We are pleased to say that the doctors determined that Judah did not need any interventions or further procedures at that time, and we were cleared for another 6 months! The test results while he was sedated looked good enough that his cardiology team didn’t want to act. We went in expecting the worst, that he would need another open heart surgery in the immediate future, and were incredibly amazed to hear that there was no plan but to continue monitoring his heart for changes.
With concerns for his heart out of the way for a few more months, Judah has been free to play all spring and summer long! He is back in daycare a couple of days a week with his friends from last year, and has really been growing to enjoy it. He is no longer in the baby room, and is now in the toddler room where the activities are a lot more fun and interactive. On the weekends we try to take Judah out for as many outings as we can, his favorite places continue to be the Carnegie Science Center and the Pittsburgh Children’s Museum, but in the last couple of months Judah even got to go to a parade in Ohio and a trip downtown to check out the annual Three Rivers Arts Festival.
Judah’s next procedure will be at the end of July, when he goes back into the OR for a scope to take another look at his trachea and airway with his new ENT team. We continue to work with Judah on vocalization and breathing from his mouth and nose instead of through the trach, and he is making some great but still slow progress. This scope procedure will hopefully give us a little more insight into what’s going on in his airway and why he is having such difficulty breathing without the trach.
And just last weekend Judah took part in his 2nd annual Congenital Heart Walk, leading Team Truncus and helping to raise money for research and awareness of Congenital Heart Defects. It was cold and rainy, but it did little to dampen anyone’s spirits. Our sincere gratitude to everyone who donated to our team and those who were able to walk with us. Team Truncus was able to raise over $3000 this year, and we helped the Pittsburgh chapter of the Congenital Heart Walk raise $100,111 for CHD research and this incredible cause! Please click here to check out the amazing research projects funded by The Children’s Heart Foundation! Unfortunately we did also continue our tradition of a post-CHD Walk visit to the Emergency Room, but Judah spent only a few hours there to get some antibiotics to fight off a little case of bacterial tracheitis, and by the next day was already feeling like himself again.
We plan to continue our summer of fun, play, and as many outings and trips as possible. Thanks again for all of your love, support, well wishes and for coming back to see more of Judah.