6/19/16 – Where has the time gone!

Where truly has the time gone! Since Judah’s surgery to remove his trach tube back in March, and his recovery over the next month, we have been so busy enjoying our new life and rapidly growing child that we haven’t even had a chance to update all of you on his amazing improvements! In the last couple of months Judah has truly thrived, grown so much, and really turned into such a grown up kid right before our eyes. Judah continues to do fantastically, and our sincere apologies for the lack of updates. But as is often the case, no news is good news, and the fact that we haven’t had a major update means there has been nothing bad, so here we go with an update of how much we’ve healed, recovered, and grown over the last few months!

Judah’s surgery back on March 4th, 2016 left us in the hospital in Cincinnati for three weeks while he recovered. Once discharged, we were allowed to go home, but just for a week until we had to return to Ohio for a follow up scope. That first follow up scope showed that Judah was healing, but not as quickly as the doctors had wanted, so they asked us to come back in one month. When we returned during the first week of May the healing looked much better, but unfortunately Judah had grown a mass of granulation tissue in his airway at the site of the repair. This was closing his airway and giving him some breathing difficulties, but it very common post procedure in a spot like this, and Judah has had these granulomas before. It was removed during that same visit, but due to this growth, the surgeon once again asked that we return in another month to make sure another granuloma has not taken its place. We returned for Judah’s 2nd follow up scope the first week of June, and his surgeon was very impressed with his healing and progress. No sign of additional granulation tissue, and we were given the wonderful news of not needing another follow up for 6 months! Judah is breathing wonderfully, and our lives have gotten exponentially easier at every step. No longer do we need to carry around bags full of equipment, suction machines, extra trachs, ventilators, and all of the gear associated with our old trached life. And although Judah has gotten a couple of sicknesses since his surgery (he did return to daycare last month), it only required one trip to the Emergency Room, and even that was just a quick visit to get a chest x-ray that came back perfectly clear. His doctors, nurses, and everyone who sees him are so amazed with how well Judah is doing these days.

This new life of minimal equipment has given us so many opportunities to just get up and go wherever, whenever. While we always tried our best to never limit Judah, the ease that we can just throw his food, meds, and some spare clothes into a backpack and head out to play is so refreshing. We have been taking the opportunities this spring and summer to get out into the world as much as possible (when Judah isn’t sick). Every week we are out and about in the world, visiting judah’s favorite zoos, playgrounds, museums, and quite possibly one of the highlights of his life so far, his first “touch-a-truck” event. He has also been cleared to go swimming, something Judah hasn’t gotten to experience yet, and so far he is a big fan of the spray-parks. We cannot wait to get him in a pool, if the spray parks and playing in puddles are any indication, we think he will love it.

Judah loves to laugh and play at every opportunity, and sometimes it seems like he can just spend hours laughing and entertaining himself. His laugh is infectious and continues to fill our hearts with delight and joy. Judah makes noise non-stop these days. He continues to work with his speech therapists to hone his vocalization skills, and his range of vocalization is definitely improving. He continues to use sign language primarily to communicate with us, and he is great at it. We look forward to the fall when Judah will start going to school! Judah has received a preliminary recommendation for enrollment at a very distinguished school near our house, the Western PA school for the Deaf. Although Judah is hearing, this school is renowned for its work with the students, and will provide in class access to occupational therapy, physical therapy, and speech language pathologists. While there are a few more hoops to jump through before Judah can be accepted to this amazing school, we are hopeful that things will work out, as it will truly provide the support he needs right now so he can work towards getting into a standard classroom when ready.

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He truly is becoming a little man right before our eyes. Judah has even recently been working hard on potty training, and doing an amazing job! He loves sporting his Spiderman and Star Wars undies.  He is growing up so quickly, and though some things have to be taken at his own pace, once he figures out how to do what he wants, he quickly becomes a pro.

We hope this summer can be filled with more fun, fewer appointments, and even some travel! We are working on plans to make some additional trips out of town, more visits to see Judah’s cousins in Cleveland and Columbus, and maybe even another big family vacation like our RV trip last year closer to the fall once things calm down a bit at work for Mommy and Daddy.
But for now the summer rolls on, and as we do every summer we are looking forward to the 2016 Greater Pittsburgh Congenital Heart Walk coming up soon in less than a week! This will be our third year walking together as Team Truncus, and raising money for an amazing cause. If you are able to make any donation for this amazing charity walk which benefits the Children’s Heart Foundation and the Adult Congenital Heart Association, the money truly goes to life saving research. Please visit our page and support our team with a donation, or if you’re able, please join Team Truncus and walk for this great cause next week!

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First appearance of Team Truncus – July 2014

Thank you all for the love, support, thoughts and prayers you are constantly giving us. Judah is truly thriving these days, and growing up so quickly. Thank you for staying with us during this amazing journey, and cheering on our incredible warrior.

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All our love
J-N-J

11 thoughts on “6/19/16 – Where has the time gone!

  1. I’ve had a smile on my face reading through your update. All good news. Judah’s a very brave little boy. Now able to enjoy life and explore new things. Thank you for keeping us informed on his progress.

  2. Thanks for update. You all 3 are amazing people. Proud of you. Wishing you everything the best. Waiting for your visit in near future.

  3. This kind of update is exactly what we were praying for, hoping for and patiently waiting for. And our reward arrived. Thank you for being such amazing parents and all 3 of you working so hard and going through so much but always knowing that there is light at the nd of the tunnel. As always our best wishes for a healthy summer and a healthylife always. Love

  4. What great news! Give me a call about the pool idea. We belong to our Summerset pool — would love to take you over there sometime.

  5. Yay! Best. Update. Ever.
    Would love to see you in Cleveland :)
    Have an awesome walk this weekend – wish we could join you! Maybe next year.
    Much love!

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