Thursday, April 5, 2018

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.  





Tuesday, April 3, 2018

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.  

 




Monday, March 26, 2018


We're just a few days away from surgery for these guys.  Can you believe it?  It's been a while ... a good rest ... and they seem A-OK and ready for this. 

Of course, we never know until it's upon us, but they are having the best attitude possible.

Your prayers are greatly appreciated for our travel and for the surgeries, the experience with a new doctor in a new hospital in a another state. 

We'll do our best to be brave and we'll send out an update as soon as we have one. 

Friday, February 23, 2018

New Surgeon ... Next Surgery


So, ... We DID It!
We drove ALL the WAY to Oklahoma ... for a doctor appointment.  
I'll be honest ... it felt foolish and odd and the closer we got and the more tired we were, the greater my inclination towards feeling like we had made a silly mistake.

We left in the evening one day last week and shortly after we started driving the high winds and the extremely dense fog set in.  

It was like driving in THIS ... 
... except it was really dark outside!

That "We walk by faith and not by sight" verse went over and over in my mind and took on a whole new meaning for me as I silently pleaded with the LORD to lift the fog and let me actually SEE the road.  I just could not bring myself to drive the speed limit for fear of having no reaction time if something actually DID come into view and, thankfully, after a while, semi-trucks started coming up behind me and passing me.  It was then that I decided to "keep my eyes fixed on Jesus" ... and tail lights ... and after a couple of hours, we were out of the fog.  ALLELUIA!!

We took turns driving and after a teeny-tiny nap at a truck stop in I-Have-No-Idea-Where-We-Were, we arrived in Oklahoma late morning.  


The medical complex is HUGE and we expected that we would have some trouble finding our way ... BUT we had no trouble AT ALL!!  That was pretty encouraging!


We met the doctor and he spent a very decent amount of time with us and we talked about why we were there, who referred us, and what the proposed next steps would be.  


We are all in agreement that the major stuff should be put off for a while to allow for continued healing and growth but there are a few things that can be done in the meantime.  


Sooooo ... next month we are going back to Oklahoma!
Yep, I am just as surprised that it will happen that quickly ... AND ... BOTH BOYS will be having a procedure done.  

Your prayers, of course, are wanted as we would like to go through this without issues and complications, especially since we will be so far from home.  We only plan to be in the area for a few days as the procedures are considered "outpatient" for typical patients.  


So, stay tuned for updates and the before-and-after photos we are hoping to surprise you with. 

Because we weren't sure what to expect from our meeting of the doctor and in the event that we would be returning home disappointed that we had travelled so far to find that we didn't like the doctor, ... we decided to take our time coming back so that we could enjoy some of the sights.  That way, it wouldn't be a total bust!

We basically took I-44 nearly the entire route and did you know that there is A LOT to see and do along I-44??  

We stopped in Diamond, Missouri ... why?
Because apparently that is where George Washington Carver was born and it is also the location of the first location for a monument in regards to Carver (I think there are other locations of significance such as in Kansas and in Alabama where he spent a large part of his life).  


There is really a lot to see at the National Monument in Missouri ...


... a lot to look at ...


... and a lot to learn about George Washington Carver.
Did you know that he discovered over 300 ways to use the peanut?




He REALLY was an amazing man!!




We also went to St. Louis ... Great City ... we will definitely go back there!  There is, of course, the St. Louis Arch (or the Jefferson Expansion National Memorial).  If you're in St. Louis, you need to, at least, go look at it. 


That's what we did ... and then we quickly went indoors because it was cool, windy, and rainy.  


Because of the weather and poor visibility, we decided NOT to go up into the Arch.  But there are several things to look at inside the building below the Arch.



A wonderful place to visit in St. Louis is the City Museum!!!

It is amazing and fun and highly stimulating to the senses.  
(Never mind that it is probably a nightmare for germ-phobic people.)
The kids did not know we were going to City Museum prior to our arrival and they were so excited when we walked in!!!


There are several floors of eye-popping excitement within City Museum.






Many of the items and structures within City Museum were collected/found in the city ... even several of the large trees!!



It sort of appears to be a life-size hamster playground, doesn't it?
  



Note to self: if we ever decide to go to City Museum again, we should bring knee pads and shin guards for Rees.  By evening when Rees went to change into his pajamas, we were reminded that he has Von Willebrands disease because his poor little legs were covered in some pretty serious bruises ... likely from all the climbing and crawling around through the tunnels and metal-wrung caverns.  

We stayed in St. Charles, Missouri, which is just outside of St. Louis.  It is a lovely town and seems like a very nice place to visit.  We quickly scanned the town but due to weather did not do too much there.  St. Charles is part of the Lewis and Clark trail so there are some sites to see related to that part of history.  




We would like to go back to see more about Lewis and Clark's time there ... when it is a bit warmer.




In a nutshell, that was our brief few days away last week.  
We're moving forward ... and looking forward ... to more progress with the boys and the new doctor.