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!

The biggest news is that the LTR (laryngotracheal reconstruction) surgery we were expecting to happen in August was cancelled after several of Judah’s various teams of doctors met and decided we were pushed into surgery too quickly. There are a lot of tests and precautionary steps to take before jumping into a major surgery like this, and some of the doctors were moving too quickly for others. While we do want Judah to get the surgeries and procedures he needs in order to continue healing and eventually get rid of the Trach tube, we don’t want to rush into anything before knowing the right steps. This surgery being cancelled for now is actually a blessing in disguise in our minds, it has led us to seek out the second opinion of a team of doctors at the Cincinnati Children’s Hospital, the leader center in the country for Children’s ENT (ear, nose, and throat) and Pulmonology. While the ENT center at our local hospital is good, Cincinnati is very well known for not only seeing the highest number of airway patients like Judah, but the doctors there are the ones that most other surgeons and ENT centers train with and learn from. We are still working out all of the details, but it looks like right now we will be spending a week or so in Cincinnati sometime in October or November so the teams there can all meet Judah and to run their tests and give us their best opinions on how we should proceed. We will provide more info on that as it unfolds over the next few months, but we are very excited to get their expert opinions.

Last month we also had another first, the first full day mommy and daddy have ever spent away from Judah. We were very glad to be able to celebrate an incredible wedding for one of our favorite people and be with a lot of our family on such a special occasion. As we learned earlier in the summer, not every event is a great opportunity to bring Judah to, and we were able to line up our nurses to provide one full day of coverage so we could get out of the house and enjoy a night away for the first time since Judah was released from the hospital. The wedding and fun times were amazing, and Judah even got to have lots of fun with his favorite nurses while we were gone. .

Judah continues to grow bigger, stronger, and smarter, and he is definitely showing every sign of being a 3 year old. He is really figuring out how to be independant, but is also getting very frustrated when he can’t do the things he wants. In an extremely age-appropriate fashion, Judah has been terrorizing his parents and nurses to get his way, and throwing tantrums when he doesn’t. Despite all of the challenges Judah has faced, and any delays or obstacles he has had to overcome, he is right on track overall with many of his behaviors and development.

 

In just a few days on September 10th Judah will officially turn 3 years old! We are so proud of him, and are inspired by his spirit and love. Judah continues to teach us something new everyday, and he does it adorably. Although we are not planning a big birthday celebration as we have done in previous years, we will have a lovely family day to play and enjoy some of Judah’s favorite things. With his 3rd birthday approaching, we will also take Judah for his first hair cut! We have been waiting until he was three as is the tradition in the Jewish faith, but as he had grown and his hair continued to grow so amazingly we often thought that we would never cut it! However, now his hair is getting so long that it is a nuisance to him, getting in his face and being very warm and itchy in the summer heat. While we certainly won’t be cutting all of his amazing curls off, stay tuned for pictures of his new look in future updates!

IMG_5884

Finally, we have been planning for our longest and farthest yet “family road trip”. At the end of this month we will take an extended weekend, rent an RV, and make a drive all the way out to Iowa so Judah can finally meet his other Great-Grandmothers and more of his family that hasn’t had an opportunity to come and meet him in person yet. We are really looking forward to these fun family get-togethers and road-trip, and although we will be without nursing support to help, we are confident that we can handle it, and have a great time together along the way making fun memories.

As always, we are so incredibly thankful for all of your love, strength, and support, and to everyone that keeps coming back to watch Judah grow. All of our love to you, Judah’s dedicated fans, friends, and family.

J-N-J

7 thoughts on “Sunday 9/6 – Summer heat and travel planning

  1. Early Happy Birthday Judah!!! Continue to stay healthy. All us Iowan’s are very excited to finally meet you. Be prepared for many hugs and kisses. Maybe even some cheek pinches too!!. Also have that face smiling as many pictures to be taken. Will be nice to see mom n dad and auntie Rachel. Love you all. Aunt Sue

  2. Klava and I had a few moments to be with Judah in August, and I’m telling you he’s ABSOLUTELY amazing!
    Happy upcoming birthday, Judah!
    Bon Voyage to Iowa!
    Waiting for new updates.
    Love!

  3. Have a happy and safe trip and celebration! You all deserve a break! Hope you have a great fall and a successful trip to Cincinnati! Love you. Will see you soon. Raya and Ed!

Leave a Reply

Your email address will not be published. Required fields are marked *