11/14/18 Growing up fast, and a big day ahead

Hello to the friends, family, and faithful followers of JudahK. It has been a while since our last update, and in this time Judah has made leaps and bounds, grown tremendously, and continues to amaze everyone. Life has not been without its ups and downs, and the time for major procedures has come back around, but first, an update from our last 2 years. 

Judah recently turned 6 years old! Since his trach removal surgery in early 2016, he has had several follow ups with his airway team in Cincinnati, and after our most recent visit for a scope in September, his surgeon says his airway looks perfect and they don’t want to see us for 3 years! He has been making great progress through Kindergarten at the Western Pennsylvania School for the Deaf. In our last post, we mentioned that Judah was not yet speaking after his trach removal, and primarily using sign language. Well, after our first family vacation to visit Grandma and Grandpa (and LegoLand) in Florida in early 2017, Judah just decided to start talking, and hasn’t stopped since! He is reading on a 2nd grade level, continuing to improve his social skills and make friends, and absolutely charming everyone who comes in contact with him.

Our last 2 years without trach tubes, ventilators, coming off of almost every medication he was on, and high care requirements has allowed us to travel and be active, spending every weekend and free moment with family, at parks, playgrounds, aquariums, science centers, and even making an international stop in Canada during an amazing RV Roadtrip of New England.

RV Roadtrip fall 2016

5th Birthday! 2017

Florida Vacation 2018

6th Birthday at Great Wolf Lodge! 2018

Although Judah is still tube fed through his g-tube, he has been making some progress with his feeding therapists on eating by mouth, going through phases where he will lick cookies, crackers, and more all the way until they fall apart in his hands, but still has difficulty with biting and chewing. His latest obsession are Cheetos, which he will lick the cheese off of until he is covered in orange.

There is so much more phenomenal progress Judah has made in so many ways, and while we want to keep all of our faithful followers up to date on just how amazing Judah is, the real purpose of this update is to share that the time has come for Judah’s next heart surgery. This Friday, November 16th 2018, Judah will return to his incredible cardiac team who have been with him since day one, to undergo another open heart surgery. When Judah was just 9 days old, and again at 6 months old, the doctors separated his common truncal artery and implanted and later replaced a conduit into his heart, in order for it to function normally.

Now, 6 years and a lot of growth later, that conduit (which does not grow with his heart) has become corroded, weakened, and stretched to its limit. The doctors will perform an open heart surgery to remove and replace this implanted conduit, with one that will hopefully last him many more years, though likely need to be replaced at least one more time in his life.

We will be updating this site during and following the surgery, so please be sure to check back, and subscribe for updates. We appreciate you all continuing to follow along with Judah, and ask for your thoughts, prayers and support on Friday, and throughout our recovery and beyond. Stay tuned for additional updates to come.

with all of our Love

32 thoughts on “11/14/18 Growing up fast, and a big day ahead

  1. All of my mojo, thoughts, best of vibes are sent your way. Will stay tuned Friday for updates. I am certain Jbear will once again bust out his amazing superhero powers and stride right through this.

    all my love!!!

  2. Praying for Judah and the Medical Team to have a very successful procedure. Looking forward to see more post surgery pictures and videos of Judah having fun, playing, learning, continue being the amazing boy he is and bring happiness and joy to his Family.

  3. We wish dear Judah the complete success with this operation and the fastest recovery.
    Much love to you all. We’ll be waiting for further updates, and hope for good news.

  4. Wishing an amazing Judah the best of luck with the surgery and a very speedy recovery!

  5. Love the update and videos. So happy to see a very active 7 year old!!!
    Prayers for a successful surgery and speedy recovery.
    JNJ you are an amazing family and an inspiration. Love you all. Aunt Sue

  6. We love you guys! Judah, you are so amazing. You must be following in your parents footsteps. Sending our love, prayers and positivity!

  7. We will be praying for you as you go through this next step – what a joy to see Judah enjoying life!

  8. Keeping all of you in our thoughts and prayers! Wishing everything will go perfect and easy! Love you all guys, and will think of Judah on Friday! This wonderful, smart boy, who so impressed us with his knowledge of space and all states and capirtal of Amerika, have a great future. Love you Judah, and with the parents you have, you’ll be able to pass all opsticalls. Raya and Ed .

  9. Our thoughts with you and amazing Judah! Good luck! Thanks for the wonderful pick in Judas travel adventures. Lot’s more to come!

  10. You’ll ALL be in my heart all day Friday November 16th– and the Rodef Shalom Choir will *dedicate* all of our singing at the service that evening to Judah! May you all have peace with the need for this surgery, and have the sure knowledge that the heart team will be working with such care to help Judah come through this next challenge in good spirits. Sending you all lots of love, and you will be in our prayers.

  11. Hi Judah, it’s so great seeing your vacation adventures! You have a joy for life many dream of, stay happy!! 🎈Special prayers for upcoming hospital stay. God Bless you and your family.

  12. You are in my thoughts and prayers! Judah you are an amazing kiddo! Miss you and Love you! See you soon!

  13. Holy cow, he’s gotten so big. I’m happy to hear he’s doing very well. My thoughts will be with you during this next step, I know he’ll keep doing amazing things. Hope to see you all soon!

  14. Your post brought me tears of joy. Know that you all will be in my thoughts and prayers for the next few weeks. I remember how fast Lynne recovered when she was 6 years old – Judah will recover quickly, too. He has such a great family and so many friends rooting for him!
    Much love,

  15. Wishing Judah a successful operation and a speedy recovery. He is a fighter and a winner. Our hopes and prayers are with you. Everything will be OK.
    Love you all.

  16. Keeping you in our prayers and hearts, wishing a very successful surgery and a speedy recovery! Good luck!
    We love you!

  17. Judah and family, Will be praying for a successful surgery and speedy recovery! Glad to see Judah is doing so well! I love all the pics and videos you shared. Give him a kiss for me😘 I miss him sooo much❤️ I am so happy he is doing so well!

  18. Sending all my love, prayers, and positive thoughts for all of you, J-N-J and the medical/caregiving team, for Friday and the days of recovery ahead. Let us know if we can help in any way. I’ll be ready for a visit whenever we get the “green light” of health and safety.

  19. Glad to know this! We’ll be there with you……….wishing all the best! Keep us posted! So glad to see Pat with the kids at Judah’s birthday party at the lodge! Sending positive thoughts to all!

  20. Our very best wishes to the amazing fighter and the entire family! You all will be in our thoughts and prayers tomorrow.

  21. So much love being sent for one special little man!! I will be watching for updates and saying a prayer for a very successful surgery and complete healing. Nurse Tina

  22. Precious Judah you will be in the hands of God and your own Medical Team… We shall pray that all the updates will be perfect…. And know this to be true….. You are loved.

  23. Hello Big boy!! My how youve grown and beaten disease! Im so very proud of you and sending prayers for quick healing this go-round. Youre in amazing hands. Wish i could be there but you hold a very special part of my heart. Fight on little man! Fight on!

    Shellie (RRT)

  24. What a welcome sight to see a new email from you! It has been so long. How Judah has grown! I will pray for the three of you that the surgery will go well.

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