A long waited hello!

I have been feeling for a while that I should really start blogging again. I mean it's been over a year, I kept starting blogs but never finishing them and then I felt there was so much to catch up on I didnt know where to start.
So here I am starting. It wont be a long blog but overtime I will catch you up in how Jude is doing.
In less then two weeks it will be the 2 year anniversary of Jude being home from the NICU. I was recently looking at photos of him 2 years ago and it all just seems so unreal. How is it possible that time can fly by and stand still all at the same time?

Jude is doing great! He still has his trach but no longer has the vent (they took it back, yay!!!) He rarely needs oxygen and has been weened off most of his meds! Jude still is fed by gtube. He loves loves food but cannot swallow. We dont know if this will be a long term thing, a forever thing, a few more months thing. They have done many test and although their is clearly a problem there is no clear cause for him not swallowing and therefore there is no answer on how to fix it. So we are just following Jude's lead and letting him have as many opportunities as he can to taste food and hopefully one day he'll start swallowing :) Jude did have tubes placed in his ears a little over a year ago. We did find out recently that he has slight hearing loss in both ears. They will be replacing the tubes in the next month or so and hopefully that will help clear some things up but we do not know if the hearing loss is permanent damage or not. Speaking of hearing, Jude knows so many signs!!! Because they are still not sure if he will be able to speak (they are leaning towards not fully) we have begun teaching Jude ASL as well as using the ipad for communication. Jude LOVES to sign. He picks up words so much faster then any of us, he definitely knows over a 100 signs.
Jude's appointments have decreased a good amount! Most of the clinics he is followed by only see him once every 6 months to a year. The vent team is now going to see him once every 6 or 8 weeks. Jude has PT, OT, & Speech once a week at the Leann Britain Center. He also goes to "school" there every friday, I stay with him. That is when he has his group therapy. Twice a month Jude has aquatics (he does not go under the water with his trach ;) ) and he also has feeding therapy twice a month, both at CMH. And then 1 a month we have a therapist come to the home.
In the summer we will be traveling to Cincinnati for a consult for Jude. Not that we dont trust our doctors here, we love our doctors but Jude's case is so rare that we are hoping maybe we can find someone who has seen something maybe similar and can give us suggestions. When I spoke with the nurse there to give an over view of Jude's case she said she had never really heard of anything like that. Cincinnati Children's has a world-renowned airway reconstruction team who sees the rare cases.  Needless to say we are praying for answers but I understand that the answer may just be wait. We are grateful they accepted Jude's case. It will be a five days and they will run multiple test and procedures while we are there.
Jude is so smart, no really I know everyone  says that about their own child but Jude really is smart! he can recognize his alphabet and tries to sign the letters (dexterity  at that age is tricky) he is even recognizing some words. he knows his colors, shapes, and numbers. He is very observant and likes to figure things out and perfect things. he is incredibly happy, he has a sense of humor just like his daddy. He always tries to get a people to laugh and loves to show off.

So this post is longer then i thought it would be. I will do my best to add a new post every week even if it's just a short blurb.

Thanks for loving my baby!