Wednesday, March 22, 2017

Hello everyone!  This past week has been a doozy, moreso of the unexpected parts than the things we expected, ... but we've gotten through it and here are our updates.  

Rees had to come home on Wednesday after he threw up at school.  Strangely, he seemed fine to me so I was slightly fearful that the expulsion was due to returning high CSF pressure.  I tend to do that ... jump to the worst case scenario.  But HE WAS acting very similarly to the times this happened in January and early February.  However, by late the next day, we determined that he must have, in fact, had a pesky stomach bug because he kindly passed it along to Brynn.  Thankfully, their episode(s) were quick and pretty uneventful.

 We were able to keep our scheduled dental appointments on Thursday.  Brynn, Jonah, and Rees were all scheduled for cleanings ...

Then we also had Jonah scheduled for some tooth extractions.


They used nitrous oxide and the usual numbing gels and injections and they removed FOUR of Jonah's teeth.  They really came out quite easily, in only about two or three minutes total for all of the teeth to be removed.  The longest part of the whole ordeal really was just the waiting for the prep and numbing agents to be administered and to take effect.  All of that took 30 - 45 minutes including the time it took to calm Jonah down when he got overly nervous about the little nasal piece with which the nitrous oxide was to be administered.  I think it made him, at first, think that it was going to be like a surgery where he is put to "sleep" first.  

Once all the prep was out of the way, he really did okay and I sat there holding his hands the whole time while he focused on breathing through his nose and listening to his mama and the dentist have various conversations.

Once we got home, we gave his teeth a peroxide "bath".  
Trust me ... they needed it!!  

They really cleaned up quite well!
We don't do the "tooth fairy" in our family and I don't think Jonah understands about that anyway BUT he was pretty excited to know that we save the teeth and he liked that we have a special spot for them.  


Jonah did not like having a mouthful of gauze so he really didn't keep it in too long.  I know he looks pitiful here but he really wasn't in any pain and he also didn't feel bad.  He was able to eat lunch not too long after we were home.  He made a good choice ... NOODLES!!



Then he proceeded to "pretend" to beat me in a game of checkers.  Of course, I LET HIM ... ("mama-of-the-year, ... YES!) and showed him all the slick moves so he could beat me for real next time.  


AND THEN because this silly mama did n-o-t NOT initially think Rees was infectious on Wednesday and I did my usual "mama-kissy-face" with him, ...by late Friday afternoon, I was in a world of stomach-flu-hurt!!  I was at work most of the day feeling okay, but not great, and as the hours went on I was noticing more and more that something was not right.  By late afternoon, I had to convince myself that my time was up and I should hightail it out of there and get home as fast as I could.  

Friends, I prayed all the way to my car, 

"LORD, please help me to get home.  Oh, let me just make it home."  

That's it, ... you can do this.  Open the car door.  Get in.  

"Please, LORD, ... please just let me make it home."  

UGH!  This is starting to hurt.  Okay, turn the car towards the exit.  

"LORD, please let me make it home! please let me make it home! please let me make it home!"

Uh-Oh!
I AM NOT going to make it home!!
I stop the car in the middle of the parking lot, open my car door and ...




This was one answer to prayer that was VERY EVIDENTLY and DISGUSTINGLY a big, fat NO!!!


I was shocked!  I mean, really, God??  This was no small regurgitation ... and I am fairly certain that there were people watching.  I am expecting, any day now, that someone is going to tell me that they saw the whole thing on YouTube. 

I was pretty sick all weekend.  So much for having an easy go of it, like Brynn and Rees.  Very thankful, though, that no one else in the house got it.



Earlier this week, we had a full day of medical appointments again.  Rees had a CT done to evaluate the status of the distractors that are supporting his forehead and to determine if there has been any bone growth since the last CT in December.

So good news is the distractors are holding nicely and there has been a "TEENY-TINY" bit of bone growth.  Nothing too surprising there!  

This is what Rees' skull looks like now ... it isn't A LOT different from three months ago but there is evidence of some bone growth.  IN REALITY, though, it is such a small amount for the length of time since his first surgery.  


The BIG DIFFERENCE is in the changes that have taken place since the most recent surgery six weeks ago.  In the photos below, the one on the left is the view from December showing that the forehead was indeed collapsing.  The one on the right is from this week showing the support and spacial difference due to the distractors.


Pretty impressive, huh??

Well, take a look at the transparent view from the other side of his head.  This just blows my mind and pretty much solidifies for me that Rees will not be participating in Physical Education, Recess, or any contact sports for a VERY LONG TIME!!  

I'm so surprised that he isn't required to wear a helmet ... but, again, ... remember I tend to jump to worst-case-scenarios.
  

Here is the transparency from the other side.  


Pretty amazing, isn't it?

Rees has a little break now again until the next surgery, which is scheduled end of May.  It's definitely good for him to have a break and to see that it isn't always "his turn".  Next up is Jonah and then Brynn ... we'll keep you all posted, of course!  In the meantime, we are looking forward to Spring and are really rooting for its swift arrival.

C'mon SPRING!!


 







Wednesday, March 8, 2017

Next Steps

Another question we are frequently asked is "What's Next?"  

It's a valid question because, as I have said previously, we are IN a "long-haul-endeavor" and we still have quite a ways to go.  Over the next few months, we will hopefully continue with the forward-progress we have been making.  
  
Both Jonah and Rees will have surgical follow-ups and Rees will have a post-Op CT to determine what changes have occurred with his skull.  I am very excited to see these images that will include a view of the Distractors that are currently in place.

This month Jonah will have several teeth extracted at the Orthodontist's request whom he continues to see once a month.  His teeth ... well, they are just all over the place and as they work to align his jaws/bite while working with the structural challenge presented due to the type of cleft he has, there are just some teeth that are going to be a problem.  He has a couple of mesiodens, which are essentially "extra teeth".  One of those will be extracted for sure, but due to problems with some of his other teeth, another one may become a primary tooth down the road.  It depends on whether or not they can salvage a few other questionable teeth.  The two teeth that are furthest back on either side of the upper jaw will be extracted ... because the cleft went through his jaw on both sides, those teeth are sort of "floating".  One of them is already very wiggly so will not require too much effort to remove.  Jonah also continues to receive speech therapy in school as well as outside of school each week.  At the end of March, he will have an outpatient surgical procedure.  This will be to do another round of steroid injections into the hypertrophic scars (very thick and raised) that were left behind after his mandibular distraction last year.  



We also work hard every day to narrow the academic gap between our boys and the other children they attend kindergarten and first grade with.  They have REALLY made a lot of progress and we are SO PROUD of them but we still have a lot of work to do before they are able to navigate academics/homework on their own. 

In April, we will have another surgery but this time is it not for one of the boys, it is for one of the girls.  Yep, it's FINALLY Brynn's turn.  Brynn was born with an encephalocele similar to Molly, however, it was much less severe.  It slightly affected her skull formation, but mostly affected the area of her left nostril as she was born without it fully formed.  She did have one surgery in China, at the age of six months, to remove the external portion of the encephalocele and to repair the nostril.



After being in the USA for a year, Brynn had a surgery that involved a bone graft (using bone from Brynn's skull) and a cartilage graft (using cartilage from Brynn's ear) to correct the deficit in Brynn's nasal structure.  She did great and for a long time, we could hardly notice that there had even been a defect at all. 



As she has grown, though, the left side of her nose is not growing parallel to the right and her nostril is effectually collapsing, or at least gives the appearance of being collapsed. Her facial anomaly is fairly minor, however, it does bother her at times, especially if someone asks her "what happened to your nose?"


So, even though she is still growing at this point, the reason we are moving forward with an adjustment for her now is because of the impending retirement of our craniofacial surgeon.  


Then, towards the end of May, Rees will be back in surgery to remove the distractors and likely replace them with "permanent" hardware.  Permanent doesn't mean forever, but it will be placed for at least a year to give his bone more time to heal, grow, and fuse together.

At this point, we do not know when Rees will have the bone graft for his nose but perhaps, we will discuss possibilities when he is seen later this month.  Right now, we're just so thankful that he is feeling so much better and that our fun-loving boy is "BACK!"










Thursday, March 2, 2017

Choices


A lot of people have been asking how the boys are doing ... if Rees is doing better ... expressing their concern ... cringing at what our little guys have been through.  The concern and the encouragement has been wonderful and comforting and strengthening ... thank-you for the prayers and the support!
  
It is such a blessing to us!!

Recently, one of the conversations really got me thinking ... it went a little something like this:

            "So, he's doing better?"

                              "Oh, yes, ... it's like he's a completely different kid!"

            "That's great!  So, that's over ...whew! ...and now you're done." (stating and questioning at the same time)

                               "Oh, ... no, we are not done.  There will be more of this fun and excitement ...  (trying to keep it positive and light) ...both boys have quite a bit yet to endure, medically speaking." 

              "What?  Really?!  Oh well, ... YOU CHOSE THIS!"

Yep!  I suppose I did ... 

You know, each of us makes choices everyday.  Our lives are built on choice after choice that we make.  Every moment of every day involves a choice.  

Am I going to acknowledge my buzzing alarm and get up to spend time with God and His Word OR am I going to hit the snooze button and sink back under the covers?


                  OR    

Should I wear the black dress pants and the gray sweater OR should I wear the hot pink cocktail dress?  (I don't actually have a hot pink cocktail dress, but that sure would be a fun choice!)
                                OR          

What will we make for dinner tonight ... easy macaroni and cheese OR steak and lobster? (yea, ... that would be sweet if the latter was in my list of choices!).

 OR      


When my children disobey, am I going to freak out in anger OR am I going to see it as a teachable moment? (honestly, I've done both!)


                        OR          

When someone says something to me that offends me or hurts my feelings, do I retaliate with a harsh defense OR do I calmly and respectfully stand my ground OR do I stay silent and simply walk away?  



CHOICES.  They are embedded into the very essence of our existence.  


We can make our own plans, but the LORD gives the right answer. 
- Proverbs 16:1 nlt

Eleven years ago, when we finally made the decision to adopt a child, we almost didn't choose Molly.  But God knew that the choices and the plans that we make are imperfect and He revealed to us that Molly was His Choice.  I've said it before ... and I'll say it again ... I cannot imagine what our life would be like if we had said no.  

Often when we make choices, we base them on what we think or know of a particular situation or plan at that time.  But in reality, none of us knows how things WILL turn out.  We can only look back and see how things DID turn out.  And many times, the difference between what we thought or expected turns out to be far greater than we could have imagined.  I know this first hand.  And let me tell you, ... when our choice matches HIS CHOICE, ... amazing and wonderful things happen!!

Soooo ....

While I didn't choose to adopt a child with a persistent and invasive tumor.
And I sure didn't choose to go through eleven surgeries in thirteen months.
And I also didn't choose for my child to have multiple complications so that he would miss a lot of school and I would miss a lot of work ...

... I did chose to be a mama to a child who didn't have one, ... to be a part of a family for a child that desperately needed one.  Yes, I chose to adopt a child with medical needs.  You know something?  I could have just as easily given birth to a child with special needs like one of my adopted children ... just like the women who actually DID give birth to them.  Those women didn't plan to give birth to a child with a physical defect but when they did, they had a choice to make ...

... and thankfully, they chose LIFE.  they chose HOPE.  they chose a FUTURE.  And their choice gave way to my choice.



Sometimes a choice is made not with complete understanding or for certain outcomes but in just knowing that it is the right choice.  NOT the EASY choice.  NOT the SAFE choice.  NOT the COMFORTABLE choice.  But the RIGHT CHOICE.

I choose to trust that God knows what is best for me and His ways are always right.  He leads me and keeps me going in the right direction but if I try to take over and steer on my own, I swerve and careen and usually end up crashing from exhaustion for trying so hard at something I am not meant to do.  I just have to keep trusting that He is always working out what's best for me.  He is always for me ... never against me.  


So, despite all of the difficulties that we have encountered with the medical care of Jonah and Rees, I do not ... even a little ... wish that I hadn't found their photos on my laptop, in the darkness of my bedroom, on that winter evening two years ago.  And even though I do, sometimes, fear the "what-ifs" and the unknown future, ... more and more I choose to just keep trusting Him ...
  
Because it was HE that lead us in choosing them.  













Tuesday, February 21, 2017

So, guess what everyone??

Rees went to school today!!  

Can you say WOO-HOO!!!  and HALLELUJAH!!!

But, let's back up just a couple days because I am a tad behind in updating.
On Saturday, we celebrated Rees' birthday since he was in the hospital on the actual day of.  

His dinner choice was homemade chicken pot pie ... excellent choice as agreed by all the family members!  His beverage choice was Sprite ... easy-peasy.  


And then he requested that his "Unfle" (uncle) Dave and Auntie JenJen come to celebrate with him.  He was glad that Unfle Dave was there to play 'thumb wars' with him.




Then he had a little goofy time on Baba's lap ... his mood is definitely improving!


And then we had birthday cake!!!


It wasn't anything too extravagant.  Good thing ... because by the end of the day he was one wiped out little guy!  

Yesterday was a REALLY LONG DAY with multiple appointments for both Jonah and Rees.  

Rees had surgery follow-up along with the removal of staples and the distractor pins.  Eek!!
 But first, Rees had the opportunity to have some fun-building time with Baba before we had to leave for the appointments.

The appointment went well!!  I mean, ... well, there wasn't any major catastrophe or twist of events as has frequently been the case.  The removal of the distractor pins, I thought, was going to be a horribly terrifying experience that was going to end in blood spill and screaming.  But nothing of the sort!!!  Rees didn't even flinch!  We kept him distracted with a game and Dr. Denny, using his trusty tools, popped the safety release on the pins (which we did not realize were even there) and out they came!!  
WOW!!  
The holes that were left (EEK!) were immediately cleaned and packed with antibiotic ointment.  Twenty-Four hours later and the openings have shrunk like shrinky dinks!  They are nearly closed off - AWESOME!

Of course, Rees was N-O-T at all happy about the removal of the staples, but this was expected.  I know that it hurts ... more in some areas, like right above the ear ... but we did our best to help him through it.  We were sure glad when that part was over.

The inside of Jonah's mouth was checked and we had some discussion about the next steps and if/when to take the next step.  We also had similar discussion regarding Rees.  

It's a long road we're on with these two, folks ... a long road.

After that first appointment, we celebrated with some ice cream.  We sure felt that at least one of us deserved it immensely, so ... of course, we ALL got some!



Ice cream makes a HAPPY FACE!!!


A little less external head-metal sure helps too!!!


So, this happy boy returned to school today!!
And that makes EVERYONE happy!!!



Friday, February 17, 2017

We're continuing to do well here ... especially since we have the most-genius-of-ideas in this airplane/neck pillow!! 
THANKS SO MUCH, Auntie Jen-Jen!! 

It's been several days that we have successfully turned the distractor rods and they are disappearing more and more into Rees' head ... EEK! He's starting to feel a lot better and he's definitely looking better too.


That tilt of the head, however, is N-O-T a photogenic gesture ... I'm sorry to say that Rees has quite the stiff neck and he moves as though he cannot turn his head.  We've tried to help him each day.  His neck is so tight!!  We think that it is possible that he was so afraid to move for those first several days, now he has a pretty serious kink in the neck.  It is going to take some time to work this out.

This afternoon was SO GORGEOUS outside that I was able to take Rees out for a short walk and then he spent a good hour, at least, out on our deck soaking up some warm sunshine, putting puzzles together.


He really enjoys puzzles!


He didn't stop until he had finished them all!


We saw Dr. Denny again yesterday.  He checked progress and confirmed that we should keep turning through the weekend.  We will return to see him on Monday and the plan is to have the staples removed and then Dr. Denny will take out the rods ... (YIPPEE  &  YIKES!!).

This is supposed to be something that can be done right in the clinic and we're hoping and praying that is exactly what happens.  You just never know with this boy!  So, let's pray that it goes well and without any "you know what!"  

On the other side, Jonah will also be seeing Dr. Denny in follow-up to his most recent surgery.  Although, we don't expect to hear too much other than when the plans are to re-do the surgery.  Yep!  That's right!  You read that correctly.  You see, in our family, it seems that we like to do things twice.  

Apparently, Jonah "UN-DID" what Dr. Denny did during the surgery to revise and enhance the pharyngeal flap  ... WITH. HIS. TONGUE.  !!!

Folks, I just can NOT make this stuff up!!  At the last follow-up, Dr. Denny took a look into Jonah's mouth, flashlight in hand, giant-super-seeing glasses on the nose and Dr. Denny, TSK'd and said, "You're kidding me!"

"What is it?", I asked.

"He's completely unzipped!"

"Huh?", I questioned.

"He's ripped out all the stitches!"

Looking dumbfounded at Jonah, I asked, "Well, how did you do THAT?"

Jonah just looked at me and stuck his tongue half-way out and wiggled it.

Yep, that's right ... like I said, I can NOT make this stuff up!!