Thing One and Thing Two

Can I just say how much I hate trachs! They completely take over your life. It's much harder to take Jax anywhere (although we don't let that stop us!) And I swear I've gotten less sleep in the last year and a half, than in my whole life!
Jax was back to his incessant coughing last night. He coughed even in sleep, which meant I was sleeping on his floor because I had to suction him constantly. We never did get our lidocaine neb, ENT wouldn't write the prescription, because he couldn't remember the dose. Our trach vent coordinator was out of town for the week. Luckily it had started to get better, but now its back again!
I took him to the dentist the other day. He is trying to get Jax back molars to come in farther so he can put a cover on them. The hope is when Jax grinds his teeth, he is not grinding the front teeth down, he is grinding on this cover. His front teeth are about halfway gone, and if they get much lower, he is going to hit a nerve! But his teeth take forever to come all the way in because Jax has never eaten by mouth. His plan was to watch the front teeth closely, to make sure he doesn't get down to the nerve, and still try to get those back molars to come in. He said there is a surgery that they can take some of the gum out, but that is really painful. When I told him he was having surgery on the 21st, he wanted to try and piggyback with neurosurgery and clean his teeth, and go ahead and try to put a cover on those molars. But when I talked to neurosurgery, they said no way, especially not dental work!
When you do dental work it introduces bacteria to the body, and with putting hardware in Jax chest, she said that was extremely dangerous. She also said with this big of a surgery, neuro would not allow it. I'm getting a little nervous about Jax surgery. It's turning out to be a bigger deal than I thought, and there is a lot of stuff neurosurgery is concerned about and will be watching with him. So on the 21st, please keep Jax in your thoughts while he has surgery!

Since the weather has been so nice, I took Jax and Arina out front to play on the grass. Jax LOVES to be outdoors when he can. It was hard to get good pictures, the sun was so bright, both kids kept closing their eyes!

But I think I have a great new nickname for them both, thanks to Universal Orlando!