Finally an update ...

It's been so long since I've updated ... I don't even know how to start a post.  Strange?  I think so.

It's been three months since I've posted on here.  Life is moving along; there's always something going on, things to do, places to go, ... 

... the school year ended.  Everyone made it!!

Molly completed her sophomore year in high school and just got her driver's license a couple months ago.  Oh boy!!  She also got her first job; she works at Panera.  She works pretty late some nights but *bonus* she brings home bread that didn't sell that day.  Mmm!!

Also, super proud of our Molly-bug for her consistent hard work and tireless enthusiasm for pushing herself and being involved.  She and her partner-in-outstanding-ness came in 2nd place at the state HOSA (Health Occupations for Students of America) Forensic Medicine competition.  Her drive and passion for excellence is just who she is (she certainly doesn't get that from me ) which makes it all the more worthwhile to witness her accomplishments!

Brynn completed sixth grade, which we are extremely thankful for.  

School is a challenge for Brynn and we have all worked really hard to help her to be able to succeed.  For the last six months she has been "brain-training" via Learning RX, a program that helps to strengthen weak cognitive skills.  We worked extra hard (blood, sweat, and tears, my friends, ... LOTS of tears!), committing ourselves to a lot of time (150 hours, 26 weeks, 6 months, forever!), and we are SUPER EXCITED to be able to say we finished what we started!!!

Jonah and Rees completed second and first grade.  Whew!  Yep, we still have a long way to go, don't we?  But they are learning and growing more and more every day!  

Rees had a great teacher this year.  He really liked her a lot and she is awesome about keeping parents updated via photos!  It's so wonderful to "watch" what the kids are doing and learning in school.

Jonah had a good year.  He caught up with all of his 1st grade sight words AND his 2nd grade sight words!  WOW!!  He really worked hard because he was still catching up from 1st grade.  He also had speech therapy during the school year and had to work hard at that too.  

His favorite thing to do right now, I think, is that silly dance called "the floss" ... he is doing it all the time!!  It's quite entertaining!  I keep telling him if he flossed his teeth the way he does the dance, the dentist would be "over the moon" with excitement!!

Right now, they are all just enjoying the summer and all it has to offer.  We're still ALWAYS busy ... I guess it's always going to be that way, huh?  

Lastly, with Jonah and Rees' most recent surgeries being out-of-state and due to some changes with our insurance coverage this year, their medical fund has been depleted and we are still paying on their latest surgical procedures. In an effort to rebuild the fund, we have designed a couple of t-shirts for a fundraiser. We did this one other time and it was fun and did pretty well so we thought we would try it again.

I've designed two shirts and there are several shirt options with various colors available (there is a front and a back to the shirt).

This first design was inspired by a sermon given by the pastor at church a couple months ago.

My superpower is the Holy Spirit.

On the back of the shirt is the verse Acts 1:8 - But you will receive power when the Holy Spirit comes upon you ...

Click here for the SUPERPOWER'd campaign, if you're interested in viewing and/or order the shirt.

https://www.bonfire.com/superpowerd-by-the-holy-spirit/

This second design is inspired by #myoneword2018. It's another way to help me keep my focus incorporating my key verse and action words.

Speak Life. THINK POSITIVE. Choose Joy.

On the back of the shirt is the verse Psalm 19:14 - May the words of my mouth and meditation of my heart be pleasing in your sight, O LORD ...

Click here for the THINK POSITIVE campaign, if you're interested in viewing and/or order the shirt.

https://www.bonfire.com/think-positive-4/

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.  

                                      

 

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.