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! Continue reading

1/29/16 – Winter blues and a big surgery scheduled!

Winter has slowed us down a bit in the J-N-J household, most of us have been sick for pretty much the entire month of January, so we’ve just been taking it easy, resting at home as much as possible, practicing our vocalizations, and getting the sickness all out of the way for Spring. We finally received more information and a date for Judah’s LTP laryngotracheal reconstructive surgery in Cincinnati, and it is approaching quickly! Continue reading

12/10 – Home from Cincinnati with a big plan ahead

After spending 5 nights in Cincinnati, an entire battery of intake and processing at a new hospital, and undergoing various scans, scopes, test, procedures, and meeting with an amazing new team of doctors, we have complete confidence in our new airway team, and a renewed hope for big changes in the Spring. Continue reading

Saturday 11/28 – Holiday season, another big trip, and a happily noisy house

With Halloween and Thanksgiving down, and Winter fast approaching, we give thanks and are grateful for all we have. Tomorrow we embark on another journey, this time to Cincinnati Children’s Hospital to learn what the future holds, and just this week we were privileged with a beautiful sound in our home.  Continue reading

Sunday 10/25 – Travel and Excitement

September and October brought the most beautiful time of year to Pittsburgh, and plenty of trips out and about near and far! Judah celebrated his 3rd birthday, his first haircut, and his first RV roadtrip out to Iowa to meet so much more of his adoring family. He also had a great cardiology check-up, and we found out when we’ll be heading to Cincinnati Children’s Hospital before the end of the year to get further analysis on Judah’s airway needs.  Continue reading

Sunday 9/6 – Summer heat and travel planning

It has been an extremely crazy summer for mommy and daddy at home and at work, but Judah has had lots of playtime, outings, and fun! The major tracheal surgery we were expecting was cancelled, bringing with it the upcoming opportunity to be seen by other specialists at a different hospital, Mommy and Daddy spent their first full day away from Judah while he played with nurses and they attended an out of state wedding, and we look forward to Judah’s upcoming 3rd birthday and our longest and farthest family trip yet! Continue reading

Tuesday 7/28 – Family night out and a surgery ahead

July has been a fun and busy month for Judah! Spending his time at daycare with his friends, playing at home and going to the library and playgrounds with us, his first spray park experience, and just this last week a pretty major airway scope with his ENT surgeon, and his first Cleveland Russian party and overnight stay in a hotel with mommy and daddy!

Continue reading

Tuesday 5/12 – Spring in full swing and another procedure ahead

Although sometimes it certainly felt like Winter was going to last forever, Spring is finally in full swing, and with it comes lots of playing outside, trips back to the parks and playgrounds, and going back to daycare. Spring also means it’s time to follow up with all of Judah’s doctors again. Continue reading

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! Continue reading

Saturday 1/31 – Hibernating at Home

Welcome back and thank you for bringing your love and checking in on Judah and all of J-N-J. We truly hope everyone had a wonderful end to 2014, and that the new year is treating you all fantastically. Although it has been a while since our last update, of course no news is good news. We have been living, laughing, and loving every day so far in 2015, and are firmly settled in to wintertime in Pittsburgh.  Continue reading

Thursday 12/4 – Holiday seasons begin and a taste of Winter

In the six weeks or so since the last update, things have been going very smoothly for Judah. He has stayed healthy, happy, playful, and a true joy to everyone who knows or meets him. In the last few weeks the end of Fall has given way to the start of Winter, which brought us Halloween and Thanksgiving, but has also taken away all the pretty leaves outside and left us with colder temperatures and our first taste of snow too.  Continue reading

Wednesday 10/22 – Fall fun

Fall is in full swing in Pittsburgh, and with it comes beautiful colored trees, cooler weather, and of course flu season. As the weather permits around here we continue to try to take Judah out of the house as much as possible, but sadly October brought Judah’s last visit to daycare at The Child’s Way as more and more kids begin to get sick, and with Judah still trached we just can’t risk him catching anything. In addition to some pretty major doctors visits, this last month has brought us many opportunities to get out and play, before the real winter lockdown begins. Continue reading

Friday 8/5 – Summer rolls on

July was a tough month for Judah, he spent most of it sick and unfortunately had to make several trips to the hospital. Early in the month Judah spent 4 nights at the hospital after getting a cold, and again at the end of the month Judah spent about 2 weeks fighting another sickness, resulting in two trips to the ER and another night in the ICU. In between illnesses and hospital visits, Judah also made his first trip up to Grandma and Grandpa Jones house, and was interviewed for and appeared on the Channel 4 News in a great story about how awesome he is and the amazing Beads of Courage program! Continue reading

Sunday 7/6 – Out and About, and back to the hospital

The last couple of weeks have brought a lot of outings as summer really kicks into full swing. Judah has been going to the Children’s Museum close to twice a week, to the parks and playgrounds, got to walk with Team Truncus at the 2014 Congenital Heart Walk, and has even started going to day care at the incredible Child’s Way at The Children’s Home. But while all of these outings have been great for Judah, his increased interactions with the world led to his first cold. With Judah’s weakened immune system and heart, a simple cold quickly led us to a 4 day stay in the Intensive Care Unit at Children’s Hospital this week.  Continue reading

Monday 6/16 – totally a toddler

Gorgeous weather in spring and summer have led to lots of outings, lots of playtimes, and Judah exercising his happy little toddler self all over the place. Judah has gotten to visit several playgrounds, experience running in the grass, and made lots of steps forward (as well as girlfriends) at his new favorite place, the Children’s Museum. In the month and a half since Judah’s LTR reconstructive surgery, he continues to heal very well, and several scopes and additional procedures have given us a good look into his newly constructed airway.  Continue reading

Friday 5/23 – Continued healing and more steps forward

It has been just under 2 weeks since Judah left the hospital after the Surgery he had on May 1st to repair and reconstruct his trachea. In that time Judah has come a long way, especially the first few days of being back at home. While not back up to 100% just yet, every day at home was an opportunity to rest and be comfortable – which is much easier when you can sleep in your own bed, hang out outside in the yard, and play with your dog and cat.  Continue reading

Monday 4/21 – Finally Spring! And a big day approaches

It seems like Spring has finally found us in Pittsburgh, though Winter is still putting up an occasional fight. The last few weeks have brought us some nicer weather and the winding down of flu season, allowing Judah to get outside of the house a lot more and have lots of fun. It also brought some big appointments with his airway doctors and cardiologists, and information on what is to come – a Spring and Summer of surgery and recovery, with lots of healing, and most importantly, progress. Continue reading

Thursday 1/30 – A cold January brings out the toddler

It has been the coldest January on record in 20 years here in Pittsburgh, which means a lot of staying at home in the cozy warm. Judah has truly become a toddler in this last month, realizing how his actions and emotions can affect us and make him get his way. Judah has thrown a few of the most adorable temper tantrums, but at the same time he has made some incredible strides in his communication. He also had a few major doctors appointments and follow-ups, which will help us shape the timeline of things to come.  Continue reading

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. Continue reading

First Birthday Bash was a huge success!

We would first like to thank all of our family, friends, supporters, and everyone who made it out to Judah’s big birthday bash yesterday, The Children’s Home of Pittsburgh for hosting us, and Icing Smiles and Bappy Cakes Bakery for an incredible Dream Cake, but we also want to thank all of the people who wanted to but couldn’t make it and sent their love and good wishes from afar. The bash was a grand success! Continue reading

Tuesday 9/10/13 – 1 year old!

One year ago today, Judah arrived into this world. He was beautiful and sweet and adorable and perfect. Mommy, daddy, and baby spent that first night in the hospital together. After about 15 hours of labor it was a night to rest in the bliss and peacefulness, and to enjoy spending that night with our first child. Both mommy and daddy have fond memories of that first night, knowing how our lives had changed and we had brought this incredible bundle of joy into existence. Continue reading

1st Birthday Bash details and RSVP

BirthdayInvite

BirthdayInviteBack

Hi everyone!

Judah here, I’m so excited for my upcoming 1st birthday and the Big Bash mommy and daddy are planning for me! I can’t believe i’m almost 1 year old! To celebrate me and my journey through the first year, please try to come and join us from 11am to 3pm at The Children’s Home of Pittsburgh on Saturday, September 28th, 2013. There will be light food and drinks, beautiful artwork, entertainment, and me (I can’t promise i’ll last the whole time, but i’ll try)! If you are on Facebook,  you can click here to RSVP to the event. If you are not on facebook, please visit this page and fill out the form at the bottom to let my mommy and daddy know you will be joining us.

We will be accepting donations for the Children’s Home of Pittsburgh at the party. To view their donation wish list, please click the link below.

Visit the Children’s Home of Pittsburgh’s Donation Wish List

I hope you will be able to make it!

Grab your laptop and RSVP!

Grab your laptop and RSVP!

Monday 7/29 – Scooting and Stepping

Since our last stay in the hospital two weeks ago, Judah has been on a new heart medication – Digoxin, and it has done a great job at stabilizing his heart rate, and now that he has mostly kicked an infection, he is as happy and playful as can be. Judah continues to make incredible strides in his development, and he is getting more mobile by the minute! Continue reading

Tuesday 7/16 – A lover of fine art

While Judah continues to grow and develop wonderfully, his heart still occasionally has trouble keeping up. For the last few weeks, Judah has continued to have more and more frequent arrhythmia’s and heart issues. For the most part they remain mild, and within an acceptable and “normal” range for his heart, but sometimes his heart rates can get a bit out of control, even with all of the medications he is on. Times like this can lead us to a visit to the Emergency Room, and Sunday, for the first time since we can home on March 21st, a 36 hour re-admission back to the Cardiac Intensive Care Unit at Children’s Hospital (more on this below). However, despite the sometimes frequent craziness in Judah’s heart, his smile and attitude never show any weakness. Continue reading

Saturday 6/29 – Summer fun!

June has for the most part been a great month for Judah. He has hit a growth spurt the last few weeks, and every day looks more and more like a little boy, and not just a baby. On monday Judah will be 42 weeks old, which is how long mommy was pregnant with him, so he will officially be out longer than he was in. Our little J has gotten to do a lot more travelling this month, with trips downtown to the Arts Festival, going to the Library and Museum, and last weekend he had a major event, and a huge trip to Temple for the first time to officially be welcomed into the community and receive his Jewish name. Continue reading

Monday 5/20 – Two Months at Home

It’s pretty hard to believe that tomorrow on 5/21 Judah will have been at home for 2 months already. Although we continue to have at least one doctors appointment that brings Judah back to the hospital every week, in those two months he has only had one brief trip to the emergency room for bloodwork, and not a single re-admission to the hospital. At home, he continues to do wonderfully. He is growing quickly, and Continue reading

Monday 5/6

Welcome back and thanks again for joining us as we continue to watch young Judah grow and thrive! Judah is doing fantastically at home, where he has been now for almost 8 weeks after spending his first 6 months of life in the hospital. At home, Judah can play with all of his toys, hang out on the couch with his monkey, sit in a variety of rocking, bouncing, and swaying chairs, and even Continue reading

Thursday 3/28 – Judah’s First Week Home!

Judah has been home for exactly one week now, and he already loves being here. We only had to go back to the Emergency Room one time this week, and we were only there for a few hours so the doctors could run some blood tests (all of which came back normal). There has certainly been a lot to get used to for mommy and daddy, and it may take a couple of weeks to get into a regular schedule again, but Judah certainly seems to prefer being home to being at the hospital, and so do we. Continue reading

Thursday 3/21 – The Eagle has Landed

193 days. We’ve waited 193 days, but at long last the day has finally come. Today, we were able to bring our son home for the first time. After several good days in a row, this afternoon Judah was discharged from Children’s Hospital. Now that we have our home nursing in place, and most of our medical equipment has been delivered, we were as prepared as possible to finally welcome our son into our home, and with him here, it truly feels like home. Continue reading