Although sometimes it certainly felt like Winter was going to last forever, Spring is finally in full swing, and with it comes lots of playing outside, trips back to the parks and playgrounds, and going back to daycare. Spring also means it’s time to follow up with all of Judah’s doctors again.
All Winter long we had done a great job keeping Judah healthy, pulling him from daycare and not making unnecessary trips to the hospital (where all the sick people are) for appointments. But now that the weather is better and we can leave the house again, that means exposing Judah to places with lots of other people around, and the ever present risk of sickness. It also means hospital season is back in full swing, and after having very few appointments for weeks and months at a time, Judah has already gotten back in to see many of his specialists, which brings sometimes but not always good news.
Doctors appointments aside for a minute, the beautiful and warm weather means lots of trips out to parks and playgrounds near and far, the science center, children’s museum, zoo, to temple to watch mommy sing in the choir, and just for lovely Sunday drives in the car (one of Judah’s favorite past times). Judah even made his first trip all the way out to Cleveland Ohio to celebrate his cousin’s birthday! We hope to get as many trips and outings this spring and summer as possible. Judah also returned to see his friends at daycare at the Child’s Way, though after just 2 visits he promptly caught his first bug of the year, and graciously gave it to mommy, daddy, and all of our nurses. Judah is great at sharing! Although he was able to fight it off enough to not be admitted to the hospital, unfortunately Mommy was not so lucky. Thankfully everyone is back up to full strength now!
Judah continues to grow bigger and stronger, and his hair continues to grow and curl out of control! His development is booming and although he is still unable to make any vocal noise he continues to learn new sign language words – he may even already have surpassed 100 words, and when you talk to him and ask him questions you can really tell he understands what you’re saying. Judah, the genius he is, has even started reading words! Just in the last couple of weeks Judah has begun recognizing written words and telling us the appropriate sign language signs without us telling him what the word is. He truly is an amazing and inspirational kid.
All of the appointments and visits with his doctors that are starting up again have given us a good idea of what the immediate future holds for Judah, and how things have changed over the winter. Unfortunately his heart continues to have problems, especially with blood pressure in his pulmonary artery. Tomorrow (Wednesday 5/13/15) Judah will once again return to the operating room for a heart catheterization (his 3rd) to determine if his artery will require ballooning, a stent, or any other procedures, which will be performed on the spot if necessary. This cath will also give doctors a better look at the inside of his heart than the standard external scans are able to show. Our (and his cardiologist’s) concern is that the conduit implanted in his heart during his first open heart surgery at just 9 days old, and replaced when he had his 2nd open-heart surgery at 6 months old, has begun to calcify and narrow. If this is the case then Judah will need yet another open-heart surgery sooner rather than later. We have trust and faith in his team, and are hopeful the cath procedure tomorrow will give his doctors the insight they need to make this determination, and they will decide what the best plan for Judah’s heart is. But the news surrounding Judah’s heart is not all bad, in the past several months Judah has had no signs of arrhythmias, meaning the Maze procedure he had done could be making a strong impact – and if he continues without arrhythmias, his cardiologist will begin to wean him off a few more of his medications.
While we hope and pray that the cath procedure goes smoothly tomorrow, we appreciate all of you continuing to keep Judah in your thoughts and prayers. We will be sure to keep everyone updated on the outcome of the procedure, as well as the plans for the future, not just with Judah’s heart, but his adorable face and incredible development.
Finally, we would also like to mention that coming up next month on Sunday June 28th we will once again be taking part in the annual Greater Pittsburgh Congenital Heart Walk to raise money and awareness of CHDs, the Adult Congenital Heart Association, and the Children’s Heart Foundation. If you are able, please join our team and walk with us in support of such an incredible cause, or if you have even a few dollars to spare, please consider making a donation. Our most sincere thanks to all who can help spread awareness of Congenital Heart Defects and the incredible warriors and angels who have been affected by them.
Thank you for visiting, and sharing your time and love with us.
all our love,