Tuesday 4/23 – One month and counting

We truly didn’t think it was possible, but Judah continues to get cuter everyday. He has also continued to grow and get healthier every day too. Judah has stretched another inch or so, and is now approaching 16.5 lbs. This week his second tooth has even broken through!

We’ve been trying to get outside to play as much as the weather allows, Judah goes for a walk with Mommy, his dog Rider, and the daytime nurse most days, and has made it to the park a couple of times with both Mommy and Daddy. Last weekend we even got to take part in The Pittsburgh Super Stroll, an event where children got to dress up like superheros and walk around Oakland to raise awareness and money for the Pittsburgh Children’s Hospital Free Care Fund. Judah put on his best SuperHero gear and got to stroll around in the sun on a lovely day.

SuperStroll

Judah keeps getting bigger and bigger, and now that he is far enough out of surgery we can lift him up from under his shoulders again. This means a whole new set of toys have opened up for him, and we are all very excited to get to play with them. Judah’s newest favorite toys are his WonderBug and his Johnny Jump-Up.

Last week brought a number of appointments, and for the most part Judah is doing fantastically since his second open heart surgery just 7 weeks ago. The bigger appointments from the week have been a visit to the Airway clinic on Tuesday, and on Friday he went into the OR for a Trach Scope. At the airway clinic they told us to keep doing what we are doing as far as working to adjust Judah’s ventilator settings. Every week we will continue to report back to them and make changes with them. If he continues to do well, we will keep working on adding more time that he is on reduced vent settings, until eventually he can be on the lowest settings all day long. Then we will begin working on taking him off the vent completely. this could take from 6 months to a year, but with each passing day he does better, and grows stronger. The trach scope on friday brought both good news and not so great news. The good news is that Judah’s airway is strong and healthy, but the bad news is that all of the scarring and irritation Judah’s throat suffered when he was very small, the reason he is currently trached, has matured into solid scar tissue, and before Judah is able to get the trach out – a process called Decannulation – he will need a Laryngotracheal reconstruction (LTR) – a reconstructive surgery on his throat to remove the scar tissue and rebuild his airway. It is another pretty major surgery that may require a few weeks in the hospital, but we hope that in 6-12 months when we are ready to discuss it more, he will be even bigger and stronger still.

Overall, Judah continues to be one of the happiest, smiley-est, and most adorable children ever. He is an absolute delight, night and day. To see him playing so happily, and see him so healthy, it is difficult to even believe all of the things he has been through. As always, our continued love and thanks to all of you who come by to see how we are doing, and who always bring us strength and support.

Our Love,

J-N-J

10 thoughts on “Tuesday 4/23 – One month and counting

  1. Ooooh, LOVE these wonderful pics of Judah doing so many different things!! Cutest super-hero yet, for sure ;-). How neat the he got to take part in this special event to raise awareness of the wonderful things Children’s Hospital is doing!! And yes, in 6 months Judah will be so much stronger and healthier, and he’ll be able to tackle that next needed surgery as needed. Wonderful to see his amazing smiles!! Love to all of you!

    Susan Richman

  2. I continue to be amazed at the progress this little miracle of a boy has made! Judah is thriving with your continual love and support. The three of you are truly blessed.

  3. How wonderful to hear from you and especially to know how nicely Judahchka is progressing. Although we are grandparents to three extraordinary and beautiful girls, we definetely agree that Judah is a delightful child and can’t help but love him more and more.

  4. Batman and his WonderBug. Love it! Not much on “binkies” but do like the mustache. Keep up the good progress Judah. Love you all. Great Aunt Sue

  5. Thanks for always taking time from your busy days to post updates and GREAT pics! You guys are amazing,and Judah has to be the happiest and cutest baby on earth! Continued prayers for all of you.

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