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.
Earlier this month, Judah had a visit with Pulmonology, ENT (ear, nose and throat) and the Airway clinic, and the results of a scope to look at his vocal chords gave us some insight on what is going on, and why we haven’t heard his voice at all, even while attempting to use a speaking valve. The scope showed that while Judah’s vocal chords are strong, his airway just below the vocal chords are suffering from 100% stenosis, which essentially means that the airway is completely closed, and not allowing him to pass air up over his vocal chords and out his mouth or nose. We had always known there was some stenosis, but didn’t know the complete extent. To fix this stenosis, the plan remains unchanged. When he is ready, the doctors will perform a full reconstructive surgery, called an LTR, or Laryngotracheal Reconstruction. Judah’s doctors seem confident that we are still on track with this surgery to occur in late Spring or early Summer, but the final scheduling of that surgery will depend on the outcome of another Sleep Study set for next week. At the last sleep study in October, Judah was able to come down to the lowest settings on the vent overnight (he has already been completely off the ventilator during the day) and we hope the results of this upcoming sleep study will allow Judah to come off the vent overnight as well.
Yesterday Judah had a big visit to see his Cardiologist, including an Echo, EKG, pacemaker interrogation, basically the works. Despite some elevated pressures in the branch pulmonary arteries, the Cardiologist is pleased overall with Judah’s heart strength and function, and didn’t want to make any major changes right now. In 3 months they will see him again, and if they see any difference there, we will discuss potential interventions. For now they just adjusted his medications due to his growth and weight increase, and sent us on our way with a smile and some clapping from Judah.
Flu season and especially the record cold weather and snow has kept us locked in the house for most of the month, and a little bit of cabin fever aside, it has given Judah tons of time to grow, as well as to work with his therapists. All of his therapists are absolutely amazed with Judah’s continued development, some even saying they’ve never seen a baby do some of the things Judah has considering all he has been through. We continue with feeding therapy and look forward to slowly moving Judah to a ‘blenderized’ diet, consisting of real food, fruits and vegetables, pureed so we can feed him through his g-tube. This will give Judah a lot of the natural vitamins and minerals found in real food, and less of the processed sugars and additives in formula. He will still receive some formula, as well as the oh so healthy breastmilk mommy continues to make for him, but this will give us a chance to really wean him off the breastmilk and start eating things a kid his age should be working towards.
Otherwise, Judah is still the incredibly happy and adorable child he has always been, even if he does throw the occasional temper tantrum when we try to get him out of his favorite car or walker. He loves to read his books, listen to music and play with his own musical instruments, and he has finally overtaken the dog in weight.
A few final notes, If you haven’t yet heard about or seen the site, we have recently lauched a project with two other heart families, a collaborative photography blog detailing the stories and spreading awareness of CHDs, called The Strong Hearts Project. Every week there will be a post from each of the three families based around a new central theme. Please bookmark, share, and frequently visit the site to read our stories and to follow along and help raise awareness. And speaking of awareness, coming up in February from the 7th to the 14th is Congenital Heart Defect Awareness week, to learn more please visit http://www.tchin.org/aware/. As always, all of our love and thanks for your continued support, strength, and for being with us in heart and mind.
J-N-J
🙂
Wow! I cannot believe how much Judah has grown, and if it’s possible , he is cuter than ever! He has made so much progress in such a short time. I am thrilled to learn that he may get his reconstructive surgery for his stenosis in the spring. Once that baby boy start talking…look out world! He is such a charmer and can’t believe that you dare say that sweet young thing has temper tantrums!!
Judah has come a long way from the baby I first saw when all this began. I am just so happy for him and for you, Mom and Dad. I know this has been a long row to hoe, but it certainly has been worth it to see Judah as he is today.
I look forward to more updates on Judah, and hopefully one day will even get the chance to meet the little darling! That could be an interesting visit though, and I am sure I would want to take him home with me and play Gwanma to him!!
My love to you all,
Trish
Thank you so much, Trish!
Actually, today, as we were waiting for our first appointment, all Judah wanted to do was wander around and flirt, smile and clap with all the people at CHP floor 3! He is such a social butterfly, Mommy may have a really hard time keeping up with him.
Judah definitely can’t wait to meet you, and most assuredly will greet you with smiles, applause and intense flirting.
Thank you so much for your kind words and love – we truly appreciate it!
Thank you for the updates. Such adorable pictures. Love to you all. Great Aunt Sue
Great Aunt Sue –
Thanks to you, Judah just got a whole new wardrobe from Baby Gap! Thank you for the gift – and it went a long way! Judah got some comfy, cool clothes that he needed alot!
He got a shirt that says “Smooth seas never made a good sailor”, which is my personal favorite.
We think of you often – stay warm!!!
THANKS so much for this wonderful update!! Loved the photos, loved hearing about this amazing new project with the two other families going down this same road, and loved learning about Judah’s good doctor visits– that was very good to learn about the stenosis, and that this can be reconstructed with the surgery that was already planned. Always helpful to gain real *insight* into what the challenge is– as then you can move ahead and do what needs to be done. Sounds like Judah is truly ‘wow-ing’ his therapists ;-).
Lots of love,
Susan
Thanks, Susan!
There are a surprising number of parents and families “going down this road”. Once you have a member of your family with a serious health problem, no matter the age, you become a part of this network of Hospital Families. And truly, once you’ve begun the journey, anyone down this road is a part of your Family.
We all live on the same road. Hospital Street. The corner of Medical Lane and Pharmacy. Where the Doctors live.
I hope to see you on Shabbat every opportunity I have! Your singing and chanting is so uplifting, renewing and beautiful -I look forward to every chance I get. I hope to see you, and hear your amazing chanting (and even one day to participate in the super duper extras on Shabbat!) soon!!
Please keep up the amazing work that you do at Rodef – you are a tour de force of love and music that I look forward to every Shabbat!!
Judah is amazing, and his parents are phenomenal. Keep up the good work – he will thrill you with every step of progress. Lynne is 30 and thriving, and has come through so much – and the technology is even better now. Your future is bright. Never give up.
Our thoughts and prayers are with you always.
Love,
Mary & David Hughes
Mary –
Please keep writing to me!
Your thoughts are inspirational and I want to read more about your journey as a Heart Mom.
Just write to me, just tell me. No pressure, just love. I thank you. I thank you for all you’ve done for all the Heart Moms.
Judah, you rock. And your mommy is awesome.
And I love you so much.
Wonder where Judah learned to flirt. Think he inherited that from his Daddy?
We continue to watch Judah’s progress happily! He is an amazing little guy. He is in our prayers at bedtime every night. Great pictures!