Tuesday 7/16 – A lover of fine art

While Judah continues to grow and develop wonderfully, his heart still occasionally has trouble keeping up. For the last few weeks, Judah has continued to have more and more frequent arrhythmia’s and heart issues. For the most part they remain mild, and within an acceptable and “normal” range for his heart, but sometimes his heart rates can get a bit out of control, even with all of the medications he is on. Times like this can lead us to a visit to the Emergency Room, and Sunday, for the first time since we can home on March 21st, a 36 hour re-admission back to the Cardiac Intensive Care Unit at Children’s Hospital (more on this below). However, despite the sometimes frequent craziness in Judah’s heart, his smile and attitude never show any weakness.

Overall, Judah is doing great. He is growing stronger, working harder to stand and walk, and getting cuter by the day. Every time we take Judah out into the world, people just can’t help but go out of their way to come over to Judah and make cutesy faces at him and tell us how incredible and adorable he is. We have known about this devastating amount of cuteness for quite some time, but it’s always amazing to see just how much attention Judah gets and how many people instantly fall in love with him.

Little J continues his journeys and adventures out into the world. Every week he visits the library to get new books, and a couple of weeks ago he got to visit the Carnegie Museum of Art and the Andy Warhol Museum. He was a bit underwhelmed with all of the art. Maybe as we continue to bring culture into Judah’s life, he will appreciate true art a bit more, but for now he still prefers the dinosaurs and animals at the Natural History Museum better.

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As Judah reached his 10 month Birthday recently, the last few weeks have been busy with doctors appointments, and it seems the rest of July will continue that way. Judah visits different doctors sometimes up to twice a week, and has visits from his Physical and Occupational therapists a couple of days a week as well. Judah’s doctors continue to be very pleased with his growth, development, and test results. These last few weeks have brought additions to Judah’s play routines to work more on standing and taking steps, to work on feeding and getting Judah comfortable playing with food, flavors and textures, and increased time on his sprints off of the ventilator. Judah is now doing two sprints a day disconnected from the vent completely for an hour and 15 minutes each, and we expect this to continue increasing rapidly as he continues doing well with it.

Despite great test results, and possibly because of his rapid growth, sometimes it does seem like Judah’s heart has difficulty keeping up. On Sunday night, Judah’s heart rates seemed to be jumping rapidly higher and lower than we expect and prefer they be, and after noticing these extremes, coupled with his loss of color in the face and increased agitation, we rushed him to the Emergency Room. After taking a look at his pacemaker and running EKGs showing very high and irregular heart rates, Judah was admitted to the CICU for observation. The episode lasted several hours, and although the doctors do not know exactly caused it, it is likely due to his young body growing and his heart reacting. The doctors continued monitoring, and decided to start him on another heart medication, that should hopefully help to level out his heart. However, due to Judah’s complicated heart condition, he will never really have a perfect or normal heart rhythm or rate. Episodes like this can be expected, but still need to be taken seriously. After watching Judah for 2 nights, the staff felt comfortable releasing him home, where we as always continue to monitor him closely. Really after almost 4 weeks, Judah was just missing his old girlfriends in the CICU and wanted a quick visit. All of the nurses who got to see him loved the chance to play with him and see how chubby he has gotten. In general Cardiac kids have difficulty putting on weight, something you have all seen from the pictures has not been a problem for Judah. They loved to see him thriving and looking so strong, even in spite of the heart episode.

We hope to be able to bring you many more stories of Judah’s outings and adventures, instead of his trips to the hospital. We continue to watch Judah very closely, and are extremely appreciative to have all of you here doing the same. Thank you all.

One final note, we are putting the finishing touches on the invitations for Judah’s 1st birthday bash, and will be updating that information very soon! You will receive another post when we do.

all our love,

J-N-J

6 thoughts on “Tuesday 7/16 – A lover of fine art

  1. Thanks so much for this long detailed update! So grateful for how alert and aware you both are in sensing when it’s time to head to the emergency room– and when it’s time to have another fun outing to the museum or library ;-). Haha. loved all the photos of Judah giving a bit of a ‘yawn’ to the paintings– but he might have been a tad curious about that knight-in-shining-armor ;-).

    Amazing that Judah is now up to an hour and 15 minutes at a time, 2x a day, off the vent completely! Wooo!!! Terrific!!!

    Looking forward to that birthday party! 😉
    Hugs to all of you!
    Susan

  2. It is always such a joy to see pictures of Judahchka and a huge thank you to you guys for sharing with us Judah’s progress. It would we great to hear only good news from you, but in life things have their own course. We wish you to overcome any and all challenges and for Judah and his parents to look forward to his 1st B-day and many many more to come in health and joy. Love, Menella and Misha

  3. Thank you for the update. Love seeing the pictures and how much Judah has grown. The yawn in the art museum picture says it all :) You can tell he is a happy little boy enjoying all his outings. Thinking of all of you each day. Love Great Aunt Sue.

  4. Thank you for update and pictures. Judah adorable and looks like his dedushka Mark.
    Love you all and cannot wait to see you.

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