What's Different ...

I've had some comments about the boys' surgeries relating to the fact that I didn't actually explain what they were having surgery for ... or ... what's different now that they've had surgery.  So, I thought I'd take a few minutes to share what has occurred.  

     

Hopefully, in the photos above, you can notice the lines in Jonah's face, outlined by scars related to the surgeries he has had to repair his bilateral facial cleft.  The cleft essentially went the full distance noted by the lines on either side of his mouth.  

                                 

These lines softened slightly after his mandibular jaw distraction ...

This most recent surgery was to, essentially, fill in the "gap" where the scars/lines/cleft indented his face.  Tissue from his inner thighs (the little bit of fat that could be found on his very lean body) was injected into either side of his face.  He will still require future surgeries to correct the defects to his skull but that will be at a later date.  

                             

There is definitely a difference in Jonah's appearance ... if you know what to look for.  Hopefully, you can see it the way we do.  He is pleased and we get a kick out of him as he gazes into the mirror at himself.

                                

As for Rees, he had a minor, but necessary next step completed with this most recent surgical procedure.  He will need A LOT done to eventually achieve for him a nose, but the process will be slow and the steps will be many.  The goal of this procedure was to reduce the size of his nostrils and to provide him with the basic minimal support for a nose. 

                

   

Prior to this surgery, the shape of Rees' vacant nose was very much shaped like a triangle.  In each of his photos above, it is easy to see it.  During the surgery, the doctor took cartilage from both of Rees' ears and transferred it into the area above and to the sides of his nostrils and grafted it to close off the top part of the nostrils.  The triangle-shaped appearance has softened and he now has a bit of support.  It will take a couple of weeks for the area to heal, which we are excited to see as it progresses.
  

We are really proud of how brave these boys are and we are so thankful for their resilience and strength.  Their first experience at a far-away hospital with a brand-new doctor was really very positive and that is a wonderful blessing.  We continue to learn so much about and from these two and our experiences strengthen their trust in our family bond.  

Oklahoma

Did you know that Oklahoma is the only state in the USA that produces iodine?

It is also a leading energy producer, concentrated on the oil and gas industry ... it is speckled with oil pumps and has particular seasons of severe thunderstorms with hail and tornadoes.

It also happens to be the home of our new craniofacial/plastic surgeon for Jonah and Rees.

Well, we made it to Oklahoma ... still can't believe we actually went so many states away to have surgery.  Ahhh, ... it IS always an adventure with these kiddos.  

We went to visit the medical center and the university campus prior to the day of surgery.  It is quite the large campus with various buildings and structures covering 104 acres.

By the day of the surgery, the boys were getting nervous, understandably.  But we had talked them through the plan as much as we could and assured them, as always, that we would be right there with them.

We have had plenty of hospital experience in the last couple years and, of course, we compared all of it when going through this week's experience in Oklahoma. While the fact that we waited five hours prior to the first child being taken back to the OR was a bit long (there was an emergency case that created a hiccup on the schedule) ... we have to say the staff at OU Children's rolled out the red carpet treatment with all the stops and all the props!! No kidding ... we were blown away by the attention and consideration that they gave us, ... no doubt to ensure a positive first patient/family experience, ... but it was over-the-top! 

One of the great parts was prepping Rees for his pre-OR IV. [Typically, the IV isn't started until after going to the OR and after general anesthesia has been administered, however, due to the schedule hiccup and the time constraints on the DDAVP (for his vWB) that needed to be administered within a certain amount of time after being mixed, Rees' IV had to be started earlier.]  

Alyssa, one of the Child Life Specialists spent MUCH of the day with us (she seriously has the best job ever) and to prepare Rees for his IV, because he usually goes into intense panic mode, she allowed him to learn how to start a real IV ... on a stuffed platypus.

Both boys were very interested and intent on learning.  They paid very close attention to Alyssa's instructions and followed her guidance in starting the IV's on the platypus.  That platypus was really a trooper, what with having four IV's done that day!

 Then they also got to play a trick on a couple of nurses. They loaded their syringes with water and squirted the nurses with water after calling them into the room (at the prompting from Alyssa, of course)!! 

They thought that was just the funniest thing ever!!!

 It was a blessing to see Rees' delight and excitement.

They also got to play games together on the department's iPad; they were together the entire time until they were ready for Rees in the OR.  

They were showered with an abundance of gifts and attention ... it was a bit much but it sure did help to keep Jonah and Rees calm and engaged; they sure were interested in checking out their goodies once they were out of recovery.

They are doing well and healing nicely.  They have dealt with swelling and bruising and scabbing but they are following doctor's orders like little champs.  We continue to be so proud of their bravery and stamina.