Welcome back and thanks for joining J-N-J again for another update on adorable and amazing baby Judah. Since Judah’s last update back in October, he has come a long way with lots of fun news to share! Judah got to have his first Halloween outside of the hospital, his first trip to the Zoo, his first Dentist appointment, lots of new developmental milestones, and later this week Judah will be featured in another news story, this time on our local NBC affiliate, WPXI – Channel 11!
Halloween is Mommy’s favorite holiday of the year, she gets to decorate the house, the dog, and even Daddy and Judah. This year mommy came up with an incredible idea to incorporate all three of J-N-J, as well as make use of Judah’s big specialized stroller called his Kid Cart. Mommy decorated the stroller up like a Presidential podium, dressed Judah up as the President, and had Mommy and Daddy dressed up like his Secret Service security detail. Judah and our costumes were a hit everywhere we went! We got to go to the Halloween Mayhem at the Kelly Strahorn Theater and also we made it to the Zoo for their annual Zoo-Boo celebration. Everyone told us that Judah definitely had their vote, and he was the cutest president ever.
In the last month, Judah has hit some great developmental milestones, and even some we never expected he would do. About two weeks ago, Judah just decided to start crawling on his own! Often times babies who have been through as many medical procedures as he has (especially with the heart surgeries and g-tube and the pacemaker all on his chest and stomach) have a hard time crawling or being on their belly. For a while Judah wasn’t a fan of tummy time, but now he is crawling all over the place and even rolling from his back to his stomach on his own. Once on his stomach, he can easily get himself into a seated position, and he’s working on pulling himself up to standing from there. Judah can stand on his own for a few seconds at a time, but still feels better when he has a hand or something to hold on to. He can make it from one side of the room to the other in just a matter of seconds if he has his walker or a couch to cruise on. Feeding therapy continues to progress, and Judah is trusting feeding time more and more. He is especially a fan of Vanilla Wafers and Applesauce, and our Therapists have us focusing on developing trust and good habits instead of focusing on a variety of foods or eating a large volume. Overall every one who sees him, from his therapists to nurses and doctors are just absolutely amazed at how well he is doing.
On the medical side, we did get the results from our Sleep Study last month, where they tested Judah on different ventilator settings to see if he is going to be able to come off of the vent completely, and while the results were overall good, they were not as great as we had hoped they would be. Judah has gone down to the lowest setting (CPAP) on his ventilator overnight, but is not yet strong enough to come off the vent completely while in his deepest sleep. Judah will need to grow a little bit more and strengthen his lungs over the next few months to be able to make that final jump completely off the ventilator. This may have pushed back our expected timeline for when Judah will finally have the trach removed completely, but we will wait as long as he needs to be able to come off the right way and remain healthy and strong. With all of the walking and cruising around, Judah has also been fitted for orthotics, or custom shoes, as he currently walks a bit like Charlie Chaplin. This is very common in kids, and especially so in medical kids. Once Judah gets his special shoes, it will relieve some of the stress and pain on his feet, and he will probably be an unstoppable walking machine at that point.
We wish all of you a happy upcoming Thanksgiving, which this year happens to coincide with the start of Hanukkah. Judah is very excited to get to spend both of these holidays at home this year instead of at the Hospital, and so are we. If you are in the Pittsburgh area, please keep an eye/DVR on Channel 11 WPXI/NBC during their 5-6:30 nightly news broadcast on Thanksgiving day, Thursday 11/28 to see a special interview with Judah, Mommy, and WPXI’s Gordon Loesch talking about our amazing experience with Children’s Hospital and the Heart Institute, and all of the incredible things they have done to get us and so many other families where we are today. After the story airs it will probably be available online, and once it is we will share the link on this site too. Again, we wish a happy, healthy, and joyous Thanksgiving to everyone. Our thanks and love for coming back to check in with Judah, for being involved in our lives and story, and for all of your love and support.