Parker is also now off the vent!! This is huge. He is now wearing a trach collar which is just like a little plastic mask that fits loosely over his trach to provide him with humidity. He was getting some supplemental oxygen as well but as of this morning the oxygen has been turned off and he's been doing great without it. Keep your fingers crossed that we can keep that off!
We have been told it's likely that no one else in the world has Parker's exact chromosomal deletion so we already know he is one of a kind but on a number of occassions we've had many different specialists say something to the effect of, "Gee, I've never seen that before." The Dr spoke with us yesterday about publishing Parker's case because they have found certain things that some Dr's may not think to look for that could be life saving in other kiddos. So...this is something we're thinking about.
In other news, I haven't gone crazy yet so that's a plus. It helps to have such a supportive family. Our parents have been trading off taking care of Alexa and this is a huge relief not having to schedule people to care for her so I can focus on being here with Parker. I miss my little girl more than I can imagine and they have brought her up to see me a few times and I cherish that time. I'm very much looking forward to getting back home and trying to find our new "normal". It will be quite a transition I'm sure but I'm confident we'll get there.
My little mummy. This was during his EEG which was normal - showed no signs of seizures!!
The night before Parker's big surgery.