It's almost more than I can think about to be honest. Planning to be gone that long, the details of the surgery, recovery, all of it is just so overwhelming.
Dr. Meara will take Joshua's entire palate apart. Skin, muscles, even nasal cavity, and then put it all back together correctly, making the palate longer. The reason why is because when he had his palate surgery in China they didn't put it together quite right nor long enough. The surgeries on his palate here weren't really what he needed but should ultimately help him get the closure he needs when his palate is put together right and made longer.
Then he will also do a lip revision which won't hurt as much as the palate but will be hard to look at for quite some time nonetheless. Not to mention the normal feelings of changing my babies face that I am having. I am trying to get lots of close up face pictures of him before changing the way he looks.
It is common to do a lip revision about this age on cleft affected kiddos it just makes me sad to think he'll look different. Glad to know so many other parents that have walked that road before me.
If you could just pray I don't have an anxiety attach between now and then. I know totally super spiritual but I'm just being honest. Surgery is NO fun! Increases Joshua's anxiety problems and just plain old stinks!
It's like knowing that you are walking into a hot furnace in a few weeks and there is no way around it other than through it. I do have some hope that this time will be different. I'm more aware of how to help him and everyone tells me that Boston Children's is great at looking at the whole child for pain management. I think that narcotics generally don't work on Joshua and increase his anxiety because all of his levels like serotonin, adrenaline, etc. are low and high anyway. Hoping and praying we can find a drug that can help him this time.
On a more fun note, here are some more fun pictures in Boston and my efforts at close ups of a constantly moving child....
Waiting for the doctor appointment.
Our new friend. They were so generous in letting us stay in their home during our stay.
We went to the Children's Museum while waiting for our flight home. Joshua loved it and it was a great way to release some energy before sitting on an airplane.
No comments:
Post a Comment