He amazes me more!

Well, Parker has undergone even more tests and seen even more specialists since my last post.  I do believe we have seen almost every specialist in this hospital (OK, not quite but we're getting close).  He also ended up getting 9 procedures during surgery instead of 4.  I must admit, I was scared to death.  My little boy powered through though and considering all he has undergone in the last couple weeks, I'd say he's a superhero.  In surgery he ended up getting a trach, a g-button, an umbilical hernia repair, an inguinal hernia repair, ear tubes, a "Ladd procedure" (repairing and relocating his bowels), an appendectomy, having a central line placed, and getting a bronchoscopy.  The Dr's joke that it's not everyday that someone gets a surgery that has the same name as them....maybe Parker is related to Dr. William Ladd down the line somewhere...maybe I can research that with all my spare time :o)

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.