Monday 10/21 – beautiful Fall

It took a while for all of us to recover after Judah’s big Birthday Bash 3 weeks ago, and every day after the party for the next week or so, Judah would wake up in the morning ready to head right back to the festivities. Little J is usually in a good mood, but after the party and all of the people and playing and fun times and celebration, Judah was in fantastic spirits. It made all of us so happy to be able to see everyone that made it out for the party – friends old and new – and truly warmed our hearts at all of the donations and love that was given.

Since the birthday, we have had a pretty fun and busy October. Judah has been enjoying watching the seasons change from Summer to Fall. Our house is surrounded by huge trees, and it seems like in the span of just the last few weeks they have quickly begun to change from bright greens to beautiful yellows, reds, and purples. Judah even got to go on a trip up to Seven Springs, a trip Mommy and Daddy make every year to celebrate their wedding anniversary. Seven Springs is a wonderful ski resort up in the mountains about an hour away, where you can see for miles and miles, and during the Fall they do a yearly Autumnfest so everyone can enjoy the incredible scenery. Judah was in awe, just as everyone else was, and got to see his first real pumpkin.

Also this month Judah got to spend a night back at the hospital for a “sleep study”. The doctors hooked Judah up to a number of probes and machines to track how he sleeps while on different ventilator settings. While Judah is completely off the ventilator all day long and even when he takes naps, overnight he is still on vent support. This sleep study first started Baby J (do we call him toddler J now?) on the lowest support setting – CPAP – for several hours while he slept, and then halfway through the night they disconnected him from the vent completely and continued to monitor him closely. We have not yet received the official results, but from what we and the doctors saw that night, Judah did very well! His oxygen saturation (monitored via pulse-ox) dipped a little bit, but quickly came right back up. We have been weaning him from the vent for several months now, starting with just a few minutes at a time, and if we get the approval to take him off overnight, this will be a major step towards getting him off the vent completely and eventually decannulation/removal of the Trach tube, hopefully around next Spring. We await the official word, but are very confident and hopeful in the results.

At home our little toddler J keeps making great strides developmentally. He still works very hard with his Occupational Therapist to develop his eating by mouth, and lately has even begun taking cookies and crackers and putting them right in his mouth by himself! He will take a small bite, and sometimes even chew on them or keep it in his mouth. This is another big step for Judah, who up until this point was not taking anything at all by mouth, and was not a big fan of flavors or textures on his tongue. While this process is slow, it is moving forward. And speaking of big steps, Judah is so close to taking his first unassisted steps! He is a maniac at home, and all he wants to do is run around all day long. For now, he still wants to hold a hand while he is walking, but over the last few days he has begun walking with the help of a walker toy all by himself! He zooms across the room and wants nothing more than wide open spaces to explore. He is perfecting his cruising from the couch, to his toys, over to the table, and back again. Mom feels like a lifeguard these days, because while Judah runs all around the room, she has to just sit back and watch over him, Judah refuses to stay put, and that’s fine with us!

On one final note, this last weekend Mommy got to speak about our experience in the hospital and at the Children’s Home at an incredible charity benefit called Noe’s Night of Light, which raised money for the Children’s Home. She will also be speaking and sharing our story next month on November 9th for Zachary’s Mission Gala. Both of these groups, among many others, are very dear to our hearts and our health, mentally and physically. They helped to get us through our day to day, be they good days or bad. Please befriend these groups and support them, for without their support we would not have made it through as well as we did. We are happy to give back to these charities as well as others, and to share and spread our story to other families who are working to overcome impossible situations and challenges. There is a very special place in Judah’s heart, and in ours, for all of these heart families.

All our love

J-N-J

8 thoughts on “Monday 10/21 – beautiful Fall

  1. Judah is getting so big. On his way for more discoveries. Those pumpkins were as big as Judsh. So happy all of you are doing so good. Love to you all. Great Aunt Sue.

  2. Thank you guys for such a great update. Although we want to hear from you as often as possible, we also know that things are very normal when you have not much to update us on. Lets keep it this way.
    We love to get only good news from you. Love menella and misha.

  3. I love seeing all the progress Judah is making all around but especially physically! I would say I can’t believe, but from knowing you I can believe it. There is no containing him now!

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