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.
The holiday season starts off early in our house, as Halloween is mommy’s favorite of them all. This year we had an awesome movie theme, a throwback to the 2004 cult classic Napoleon Dynamite. Judah with his curly hair made an amazing Napoleon, and mommy and daddy as always were his excellent supporting cast. This year took us to the Sewickley parade and library, where Judah’s also very awesome truncus friend Lynn works and was hosting a great halloween party, naming us the “Best Family Costume”. Thanksgiving brought us another opportunity to be grateful for the love we share with our family and friends, and we wish all the best to you and all of yours. And of course it signals the approach of Winter – we’ve been trying to squeeze every bit of fun and outdoor play out of this extended warm fall, knowing that the cold and snow will lock us in the house for a while soon enough.
Our major news of course is that tomorrow we leave for Cincinnati and a week of appointments, doctors, and hospital stays as we do a full intake evaluation with the various departments at Cincinnati Children’s Hospital – the top rated hospital in the country for pediatric pulmonology. The next week will be spent meeting new doctors in cardiology, ENT, GI, Pulmonology, and others, to get a second opinion on the path for Judah’s care, primarily with his airway and hopes of someday getting his trach removed. This week will be purely investigative for the team in Cincinnati, helping us to create a plan for the future. We hope that by the end of the week we will have some answers and thoughts from everyone we meet, but at this point we are still unsure what they will say, or when exactly we may find out details of what they think. We do hope for an easy week, as this will be our longest time without nursing support, but know that we can do whatever it takes for Judah’s care. One of the tests he will undergo is a Sleep Study, something he has gone through a couple of times before. During the sleep study a number of electrodes must be glued to the head and face to monitor breathing, oxygen levels, heart rates and more, and sadly Judah’s incredible curly hair would cause a lot of problems with the application, maintenance, and removal of the electrodes. Due to this, we decided it would be best for Judah if we trimmed his hair down short before this procedure – and earlier today Judah lost his signature curls. He is still absolutely adorable with short hair, but expect to see the curls return some day.
An absolute amazing joy and blessing in our house recently, as almost exactly 3 years to the day of Judah’s tracheotomy surgery and the last time we were able to hear his voice, just over a week ago Judah began making noise and trying to talk to us vocally! Judah has been great at learning some sign language words in order to express his needs, but since his tracheotomy surgery in November of 2012 he has been completely silent, unable to push air up past his vocal chords and out his mouth. But as of just recently, Judah has learned how to do just that, and begun with a “ha” and “hi” sound, and while at first he was a bit unsure and confused by the noises he was making, after just a couple of days he now loves to show it off and make noise and say “Hi” to everyone. While a lot of practice and therapy will be needed to really build his strength and abilities, it’s an amazing first step towards speech, and such a beautiful sound to hear, truly music to our ears!
the first night Judah made noise for us
just a couple of days later and already a pro
The end of the year brings so many holidays and so much to be thankful, joyous, and grateful for. We’re overjoyed to finally begin to hear Judah’s voice again, thankful for the ability to give Judah the opportunities he needs, for our doctors and nurses, progress and good health when we can get it, and for all of you – our amazing supporters. Please continue to keep Judah in your thoughts as he undergoes various scans, scopes, and procedures this week. As we get any details on what the future holds, we will of course let everyone know.