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.  

Yesterday was a SNOW day ...

... NO SCHOOL for the kids and no work for Baba (too far to drive in the snowy mess)

It was a SICK day for me!  Yuck!  I came down with a cold HARD and FAST late Tuesday and it put me out on Wednesday.  Then I tried to be strong on Thursday and went to work.  Well, that pretty much wiped me out so now I stayed home another day. 

So, guess what that means ... ??

It means I can work on a POST!

I know it's been a while and now there's a lot that I can share with my readers.  

These two ...

... they either absolutely LOVE each other or despise one another (yep, we have days like that).  

Well, this little buddy has been working hard on his speech, consistently speaking clearly and slowly, while trying to articulate ALL the sounds.  There are quite a few sounds that he still really has trouble with but he's making progress.

One of the things I try to work on with him is getting him to exercise his lip muscles.  He has little concept of getting his upper lip to coordinate movement.  It is quite the challenge for him but he expresses interest in blowing bubbles with chewing gum and being able to whistle, which can only be achieved by him learning to exercise and control his upper lip movements.  

We've started a speech chart for Jonah and he gets stickers for the hard work that he does during his home sessions.  He is pretty excited because when he acquires a certain number of stickers, he will be rewarded ... with his favorite ... FOODS!

After Christmas always starts our string of non-stop birthdays for two months.  And I can't even believe that THIS HAPPENED!!!

My first-born ... oh-so-cute-and-cuddly-guy that he was ...

HE TURNED 25!!!

(I just cannot believe it!)

Then this guy turned 9!

He's our noodle-loving, Batman-crazed, bumble-boy, Jonah!!

He requested noodles (of course) for his birthday and chocolate cake for dessert.  What a guy!

He got a Batman bath robe as one of his gifts and, oh my goodness!!  He L-O-V-E-S it!!!  He wears it all the time.

A week later, we celebrated this girl's birthday!
We can't believe that she is 12 years old already ... seriously the fastest ten years of our lives!!!!  She's so incredibly simple.  She chose grilled cheese and tomato soup for her birthday dinner and a red velvet cake for dessert.  Yum!

In other Brynn news, she's been working really hard on her Learning Rx.  She was awarded with a certificate for accomplishing saying all the US Presidents, in order, in less than 30 seconds.  

Can YOU do that??

She and I work three times a week at home and then she attends at the center and works with her trainer twice a week.  It's A LOT but we have seen some improvements and we are hopeful that she continues to improve and succeed.

And then our little buddy, Rees, FINALLY lost his 1st tooth!!!

That is a huge milestone!

We weren't sure he was even going to lose a tooth.

It's his 8th birthday today!

We are really blessed to have him in our family.  

He's another simple one ... he chose pizza for his dinner ... good choice, buddy!

For his cake, he wanted something strawberry so we chose a strawberry shortcake.  Brynn was happy to be able to light his candles.

 

He finally got a bathrobe ... thought it was going to be a problem when Jonah got one first.  But our little man was patient and ... yippee ... it paid off!!

Later this week we will be taking our trip to Oklahoma City to meet a new surgeon.  We are excited for the opportunity and we will try to keep our scrutinizing to an acceptable level.  Hopefully, we will have a very exciting post to share after our return.  

Until then ... oh, and somebody will be turning Sweet Sixteen two weeks from today!  Good Grief!!

Updates

Well, HELLO readers, family and friends!  Happy New Year!!

It's already January 7th!!  You know, I am starting to find that what THEY say is true ... the older one gets, the faster time goes by!  I didn't get Christmas cards sent out and I've been working on a letter to send out with New Years cards, though that doesn't seem to be happening either so I am making the effort to do this post!  I just hate that time does not wait for all the things I have wanted to say but haven't had the time to get out.  But I guess that means that I should be very thankful ... and I am to be sure ... because I have so much to and so many that are keeping me quite occupied.

This year will likely be 'no exception' as we have already begun new tasks and the onset of planning for new adventures.  As you may recall, we have been looking for the next steps to take with regards to Rees and his medical situation.  Because his nasal defect and cleft were greatly as a result of (or at least aggravated by) the hamartoma/hamartomatous tissue (both in his bone and surrounding tissue), his surgeries have been problematic and inhibited by complications and getting him a nose is not as simple as finding someone really good at nasal reconstruction.  To correct it will likely be at least three surgeries and the problem with doing this type of constructive surgery is that there are too many unknowns right now.  

Rees has lots of growing to do and he could very likely end up with a nose that is too small or too large for his face.  And then, if we find that the tumor continues to grow, then all that work to construct him a nose will very likely have been for nothing because it could essentially damage or destroy the construction.  Our former surgeon is the surgeon who performed all of his surgeries and knows the complexity of his case better than anyone.  We were very confident of his abilities and the plan that he had outlined for Rees.  Rees’ numerous complications prevented the surgeon from achieving all of the steps he outlined but we have found a doctor (craniofacial / plastic surgeon) who is comfortable with continuing the plan that was started for Rees, which is to essentially play out over the next ten years.  We will be travelling to Oklahoma next month to meet this surgeon and to discuss Rees' case.  This is a BIG step for us with the doctor being so far away but we believe that we should go to meet him, ... and take it a step at a time.  We have sought God's guidance and provision and He has certainly opened the doors to this opportunity ... 

Simultaneously, our latest endeavor has recently begun and it is a real humdinger!  Truly, I continue to be stretched by my little handful of blessings.  Seriously, though ... our Brynn has struggled academically ... always really ... and it just gets to be more of a challenge with each passing year, which carries over to problems with daily functioning as well.  We have really reached our wits end with how to help her and after hearing the promotions for Learning Rx on the radio numerous times, we finally decided to give them a call.

LearningRx trains the cognitive skills the brain uses to think, learn, and read.  I really hesitate to share this because ... well, for as many positive comments and reviews I can receive, I can equally obtain or find the same with negativity.  It is crazy expensive and sort of feels like gambling, (who wants to do that when referring to his or her child), ... but we'd rather lose the money than the child.  It also requires a rigorous routine of "brain training" five times per week.  She receives one-on-one training at the center, which is 80+ miles round trip, as well as at home ... by me ...  Ahem ... !!!  That means I have to train as well so that I can be an effective trainer at home.  That also means that Baba has to step-it-up more too, especially since we're still working on getting Jonah and Rees up to speed on so many things.  Committing to the Learning Rx program is gonna be a DOOZY of an experience but in the end, we are hoping there will be plenty of "positive" to be thankful for, even if Brynn continues to struggle in school.  Time will tell ... PRAY for US!!!

We seem to have taken some steps backward with Jonah and his speech.  It was definitely a detriment when we found that our insurance wouldn’t authorize any more speech visits last August due to the annual cap they have.  Thankfully, Jonah receives speech therapy in school several times a week but we are also seeing a change in his jaw structure, which we believe is attributing to some of the loss of speech ability.  He has grown A LOT, especially in the last year.  That IS really good … however, his face is growing but his lower jaw is not.  The orthodontist now says, “well, that was to be expected.”  But we need to start documenting, I believe, to show that it is affecting his ability to speak.  We continue to work with him at home to encourage him to speak slowly and think about the sounds of the words as he is speaking them.  

And this girl ... 

 

... well, as you can see, she is growing up WAY TOO FAST!!  She is practically driving us everywhere in preparation to take her driver's license test.  It's super CRAZY that we are making graduation and college plans ... it's just a little more than two years away!

UNREAL!! But what a blessing it has been to watch her grow.

Happy New Year from all of us!!  

We wish you a year of beautiful experiences full of love, and faith, and hope!