Saturday 3/21 – Springtime finally arrives and 2 years at home!

After spending the first 7 months of his life living in a hospital room, enduring multiple surgeries and countless procedures, two years ago today Judah finally came home for the first time. In those two years, he has grown so much, developed faster and smarter than many said he could, and given us an immeasurable amount of smiles, laughs, and love. Every road has bumps along the way, but Judah continues to give us more joy and pride with each passing day. And now that Spring and better weather approach, we can finally get back out into the world again!

The end of winter brings an eventual end to sickness and flu, and although getting sick is always a risk, now that Judah is a bit older and stronger he should be able to fight infection a bit better. While it is still a little chilly in Pittsburgh, we hope that as April rolls around we’ll finally be able to get back to the parks and playgrounds we have missed so much over the last few months. We have already begun making walks around the block, trips back to the library and museums, a trip to temple for the Purim Carnival, and this season expect to make some day trips further out of the city.

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It will be wonderful to make day trips back to Gramma and Grampa Jones’ cabin, out to visit family in Cleveland and Columbus, and eventually even farther away as we get comfortable with travelling as a family and managing without a nurse through the nights. Judah does require skilled nursing care every night as he is still on the ventilator while he sleeps. He needs medications and semi-frequent trach care, and being without a nurse means that mommy or daddy have to stay up all night to sit with him and make sure he is ok – this makes overnight travel very difficult for us right now.

During the winter we try to avoid the hospital as much as possible, but now that the weather is getting better and fewer people are sick, it’s time to get back for all of Judah’s follow-ups – his airway team will begin working closely with him again, follow-ups with cardiology and the whole crew. Judah has been doing very well for the last few months, healthy, happy, and just overall goofy and silly. For the last 6 weeks Judah had been working with a trial of an assisted communication device, and his language skills and overall communication and development have been blossoming at an incredible rate. Just a couple of weeks ago Judah had his yearly evaluation for Early Intervention (his speech and occupational therapies) and the results were very impressive. Though the trial is over and the speaking device had to be returned, we hope to be able to get a device permanently for him, and of course continue to work on sign language and vocalization.

As Spring finally blossoms we will spend the next few weeks and months coming out of our own shells, back to the park, zoo, playgrounds, to visit family and on fun outings every weekend. While getting sick is still a concern, exposing Judah to everything the city and the world have to offer are just as important. Two years ago when we finally brought Judah home from the hospital we never could have imagined how far he would come, and how quickly! Thank you all again for checking in with us, on Judah’s progress, and for your constant love and support.

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All our love,

J-N-J

5 thoughts on “Saturday 3/21 – Springtime finally arrives and 2 years at home!

  1. May we only hear good news from you guys, and we are pretty sure one of those days Judah is going to come visit his LA family! We love you!

  2. Miracles do happen to people who have the stamina to bring them to their life. May we hear more and more great news from the J-N-J family about Judah’s health progress and him getting stronger and stronger. May he continue to bring only happiness and joy to his parents, family and friends. Our love and admiration to you guys.

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