Sunday, January 22, 2017

Be Still ... LONG POST ...

We thought 2017 would be better!  We looked forward to a new, fresh start.  With Rees' most recent medical procedure, we expected to only be in the hospital for one night at the most.  We said this was a super simple procedure.  On our fourth night in the hospital, I started writing this post.  A week and a half after this surgery and Rees is still not himself and we are struggling with physical and emotional indications that something is not right.

We think a lot of things and we make a lot of plans, don't we?  2016 sure should have knocked it into my head that I am not in control, but apparently, I didn’t quite get it ... somehow, I missed the point or perhaps, I regressed a bit, you know, two steps forward -- one step back.

Let me explain, ... last year, after all that we were dealt with Rees' multiple surgeries and my missing so much work, I wanted to do everything I could do to NOT take advantage of my place of employment (after all, they were so gracious and generous to me and my family while I was off).  I did everything I could to get back to work as soon as possible.  I was only back to work two weeks when my mother's health really took a turn for the worse.  Because I had missed so much work taking care of Rees, I was unable to be there for my mom as much as I or she would have liked.  I was conflicted with where my role was.  And I struggled with balancing time and responsibility, even after my mom passed away.  I spent the rest of the year with my self-created commissions of controlled responsibility, planning, and time.   I made it to the end of 2016 doing everything I could to make things happen the way I wanted or needed in order to secure my 2017,  to start off stress-free, invulnerable, and self-assured.

And then I come to this past week full of confidence and self-reliance ... and it has left me teetering between my plans and what is happening in reality ... and I am threatening to fall off my self-built wall of security.

Seriously?  I am back in this place?  I thought I had come so far ... 

A year ago, during the mega-medical ordeal with Rees (it was MEGA to me!), I really struggled with what was happening, what wasn’t happening, the many questions we had, and the answers we weren't getting.

So many people were encouraging us, praying with and for us and Rees, offering support in a variety of ways, sending cards and messages with words of encouragement and bible verses.  It was a long process but I eventually and thankfully came to a place of surrender and quiet rest, stillness and trust.  I ended up designing a shirt so that I would have a reminder of all that we had gone through and what God had spoken over me and taught me.


I got mine in a sweatshirt ... I love it!

The premise was ... partly to raise some money to help offset the medical expenses, but mostly, it was more to have something that would be a reminder.  You can read the full explanation of how I came up with the design by clicking RIGHT HERE.  Otherwise the condensed version from my post is below:

I have really tried to keep hold of the the Words that ironically inspire me to keep moving ... "Be Still" ...  
- Be still in the presence of the LORD and wait patiently for Him to act. ~Psalm 37:7 (nlt)    

~ Be Still ~

Two small words ... yet, they invoke a great amount of attention and they direct me to the other words ... 

Wait for the Lordbe strong and take heart and wait for the Lord.  Psalm 27:14 (ncv)
Trust God from the bottom of your heart; don’t try to figure out everything on your own.
Listen for God’s voice in everything you do, everywhere you go; he’s the one who will keep you on track.  Proverbs 3:5-6 (msg)
Be joyful because you have hope. Be patient when trouble comes, and pray at all times.  Romans 12:12 (ncv)
... in quietness and trust is your strength ... Isaiah 30:15 (niv)
Devote yourselves to prayer, being watchful and thankful. Colossians 4:2 (niv)
Be cheerful no matter what; pray all the time; thank God no matter what happens. 
1 Thessalonians 5:16-17 (msg)

And then my mom died and I began to unravel spiritually.  I didn’t want to accept what I know or cling to what I believe.  I do believe that God gave me strength to get through so many moments with my mother.  In hindsight, I question how I didn't just completely fall apart.  But there are DOTS along the timeline that stand out to me as moments of failure or ineffective faith and those DOTS are what have threatened to defeat me.

For several years (and I mean like eight or more years now), I have wanted to do a momentous study on prayer.  I have felt a longing, a pulling, a desire to understand and to trust more in prayer.  Most of the time, in MY own issues or struggles, I have found it tremendously difficult to pray.  TRUTH!  

I feel like I argue with myself about prayer and I am conflicted ...  

Why isn't God fixing this problem?  YOU DO NOT GET WHAT YOU WANT BECAUSE YOU DO NOT ASK GOD. (James 4:2b)  So, I ask ...

But then I don't seem to get a response so I must not be praying the right way!  OR WHEN YOU ASK, YOU DO NOT RECEIVE BECAUSE THE REASON YOU ASK IS WRONG. (James 4:3a)  

OR My faith isn't strong enough!  WHEN YOU ASK, YOU MUST BELIEVE AND NOT DOUBT, BECAUSE THE ONE WHO DOUBTS IS LIKE A WAVE OF THE SEA, BLOWN AND TOSSED BY THE WIND.  THAT PERSON SHOULD NOT EXPECT TO RECEIVE ANYTHING FROM THE LORD. (James 16:7)  

I don't know what the will of God is but I still try to praying as if my faith is strong enough to move the mountains but then I feel like I'm being bossy, over confident, and prideful.  YOU DON'T HAVE ENOUGH FAITH, JESUS TOLD THEM.  I TELL YOU THE TRUTH, IF YOU HAD FAITH EVEN AS SMALL AS A MUSTARD SEED, YOU COULD SAY TO THIS MOUNTAIN, MOVE FROM HERE TO THERE, AND IT WOULD MOVE.  NOTHING WOULD BE IMPOSSIBLE.  (Matthew 17:20)

So, it sometimes seems that prayer is just another way for me to continually fail and then really ... it becomes about me ... and not about God, whom I believe doesn't really NEED for me to pray in order for Him to act anyway!!  I'M CONVINCED YOU CAN DO ANYTHING AND EVERYTHING.  NOTHING AND NO ONE CAN UPSET YOUR PLANS. (Job 42:2)

Don't get me wrong, ... I pray ... but sometimes, based on things that have or haven't happened in my past experiences, I ponder if I don't pray a certain way or the right number of times or if I didn't pray for something specific and detailed, then is it my fault that something did or didn't happen??  Is that really how God works??  It can't be ... He knows me.  He knows my heart.  I don't ever have to speak a single word out loud and He knows every thought and every word that crosses my mind.  GOD, INVESTIGATE MY LIFE; GET ALL THE FACTS FIRSTHAND.  I'M AN OPEN BOOK TO YOU; EVEN FROM A DISTANCE, YOU KNOW WHAT I'M THINKING.  YOU KNOW WHEN I LEAVE AND WHEN I GET BACK; I'M NEVER OUT OF YOUR SIGHT.  YOU KNOW EVERYTHING I'M GOING TO SAY BEFORE I START THE FIRST SENTENCE.  (Psalm 139:1-5) ... but sometimes I wonder.  And I am conflicted ...

 ... with whether or not my prayers are strong enough or faithful enough to make a difference  ... to satisfy God and cause Him to move on my behalf.

 I have prayed for all manner of healing over a son who has struggled with an illness for nearly three years ... for a beloved and treasured friend ... for a mother.  It has often felt that my prayers don't seem to come even close to shifting towards positive improvement.

Do my prayers really make a difference?  In my heart, I believe they do ... I just don't always understand and my ways are not HIS WAYS.  Friends, I am starting to gather that there's way more to PRAYER than I could have ever imagined. I've seen it before in other people.  I've felt it before because of other people.  I've even experienced it for myself several times in certain circumstances but I believe that what I am entering now is something completely (not different, but) MORE, much MORE.  

It's possibly going to be a long, slow process ... I know it will take time, which may be why I've neglected to start it.
I am a person who responds quickly to assigned tasks.  I'm frequently complimented on how prompt I am.  I get an idea and I want to bring it to completion immediately.  (the older I get, the harder that is to do)

What I've realized is that to "be still" is a daily work.  I have to keep on being still, moment by moment, day by day.  I can't pile up on the stillness and then expect it to keep me going for X amount of days or weeks.

My youngest son is slow ... slow at adjusting, slow at healing, slow at expressing and communicating.  To truly help him and be there for him, I am forced to go slow.  This is a challenge for me.  But I don't really have a choice, now do I?  I'm the one that needs to get with the program ... 

At church the Sunday before Rees' first surgery, the Pastor and the Elders prayed for our family and for Rees as he was about to undergo more medical procedures.  There was special music that day.  One of the teens in our congregation played Hillsong United's OCEANS on his trombone.  Of course, there were no words, but as I know them, they sounded in my mind as he played the chords.

"Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior"

Tears filled my eyes and a tightness took my throat.  I was very moved by the way he played as the words went through my mind as a prayer to the LORD, their true implication powerful, yet terrifying. I'm afraid of how brave I may have to be.  

But I am determined to cling to Jesus.  

We will see the surgeons on Monday and plans should be revealed and discussed for this week's surgeries for both Jonah and Rees.  We will share what we know when we know ... in the meantime, I will practice "Being Still" and end this very long post (bless you if you have stuck it out to the end) with one of the new prayers I have written out in my new prayer journal (more on that in future posts):


I lie down and sleep and I wake again because you, LORD, sustain me.  In peace I will lie down and sleep, for you alone, LORD, keep me safe.  (Ps. 3:5, 4:8)  Teach me, LORD, as I need to learn to live from a place of resting in You.  I trust in You, my God!  Lead me by Your truth and teach me, for You are the God who saves me and I put my hope in You.  (Ps. 25:5)  Help me each day to be strong and courageous and to trust that You are with me wherever I go.  (Joshua 1:9, Deut. 31:6)

In Jesus' Name, AMEN

Sunday, January 15, 2017

Sorry about nearly seeing up my nose in this photo.  I'm not so good at "selfies" and we'll just have to take what we can get.  And we sure do have to give 'kudos' to Rees for his attempt to smile.

As you might be able to tell, we are still in the hospital.  Rees HAS made some progress, thankfully.  It's just very slow. "Neurosurg", as we're calling them, has confirmed that, though this side effect is uncommon, (yep, that's why Rees is having it), it is something that takes time.  It is a slow process.  It cannot be rushed.

So, for, now this is what progress in a slow-process looks like.

In the last (almost) 24 hours, Rees has progressed to eating some toast in addition to the crackers he has been keeping down.  He also had water and more Cola (best medicine ever) and then this afternoon, we graduated to chicken noodle soup.  That went well and he ate all of it.  About an hour and a half later, he did end up bringing some of it back up.  It surely wasn’t all of it, though, so we still feel progress has been made.

The other new thing for today is that the head of the bed is slowly being raised.  Instead of laying completely flat, we are up to 30 degrees and tolerating it okay, aside from the short bits of frustration.  These incidents nearly shut him down completely to the point that he will barely speak to anyone, including me.  That has made this a little more difficult but we are still hopeful for forward-progress.

There's all sorts of things that I imagine are going through his mind.  Each time we come to the hospital, we tell him that everything is going to be okay, the procedure will be quick, we'll get to go home right away, there won't be any owes, etc ... now, let me assure you, ..  we NEVER deliberately tell our children something that isn't true or is beyond our expectations to pacify them or ourselves or to avoid an uncomfortable outburst or expression of disappointment.  With Rees, it really just comes down to him NEVER reacting or responding in the way that the doctors expect or that follow suit with typical patient outcomes.  We have come to realize that we have a child who has consistently NOT responded, recovered, or reacted to medical tests and procedures in the typical or expected way.  But to Rees, he may think we’re tricking him.  He may feel that we're not being honest.  He may wonder about whether or not he can really trust us.

Each time he has an appointment or needs a procedure, he wants to know the details and then he wants to go over it again and again.  I don’t know why or what exactly it is that he is trying to ensure ... but this is his way.  Each time, the only thing we've been able to accurately state is that we will be there for him, we will hold his hand, and we will take care of him.  We hope that over more time, this is what will stand out to him the most.


Saturday, January 14, 2017

We are still at the hospital with Rees.  What was supposed to be a very simple procedure has become another problem for this little nugget of ours.  It seems that his body needs time to adjust to not having the shunt.  He was very nauseous for the first 28 hours and has had to be flat on one side all that time.  It is quite strange.  He mostly slept the entire day yesterday, wouldn't open his eyes until around 7pm last night, and hasn't had a thing to eat or drink.  

One thing that happened that I rather enjoyed was when we got a visit from Azula the therapy dog.  Rees wasn't very into it but I thought it was great!  

After only just less than 36 hours of having an IV, his hand became very swollen so they had to take the IV out and give his hand hot packs.  His hand is pretty swollen.  A few hours later they came to do a new IV.  After that he near completely shut down.  He is at least talking to me a little bit, though in a very low whisper.  He would barely say a thing for the first day.  We were really hoping that today would be so much better.  It's now been 48 hours and he is still flat and very lethargic.   There have been a few improvements today.  He has has ice chips as well as sips of water and juice.  He also had about a fourth can of cola.  Yep, that's right.  The neurosurgeon came by and suggested we try that as the caffeine could help if he is experiencing a headache and is just not telling us.  Just in the last 30 minutes, we have dared to try crackers.  He has eaten two Saltines and a small piece of graham cracker washed down with more ice.  Well, of all that he's tried today (rather, been forced to try) he has only vomited or spit up twice. Not very much either time.  This is an improvement.  He was exhausted by eating the crackers (no, seriously) so I said he could have a small nap but that me and my crackers would be back for more.  
Thank you so much for all your prayers.  It is greatly appreciated.

Wednesday, January 11, 2017

So, here we are starting off 2017 with a BANG!  Ready or not, here it comes!!
As I mentioned in my previous post, our boy Rees continues to be a medical challenge.  He is scheduled to have his lumbar shunt removed by the neurosurgeon this week on Thursday.  It is said to be a relatively simple procedure but it will not be outpatient surgery.  He will be admitted for at least one overnight.  

I will actually be relieved when it is out (it will be good to have one less thing to worry about) and I just tell myself that we will deal with the "What If's"  IF  they become an issue.


Assuming all goes well with the shunt removal, Rees will then go through with his previously scheduled surgery on the 26th for hardware removal and possible bone graft.  We will meet with the plastic surgeon a few days prior and at that appointment, Rees will have his health and physical and we will have the opportunity to ask our questions and hear what the plans are regarding the issues with Rees' skull bones.  That's really all we know right now on the medical front for Rees.  It is enough, for the moment.

Education-wise, we continue to work with him as he tries to learn sight words, reading, writing and math concepts.  

Moving on to our guy, Jonah.  He is doing pretty well and he is doing his best to soak up all that continues to be poured out on him.  He is a hard worker and he wants to do well but more and more he needs to be encouraged and pursuaded to "keep going" and continue to tackle the mountain of tasks he's being expected to accomplish.  More and more I question the goals of our public school system.  

Jonah continues to receive speech therapy in school and we are just waiting for our new insurance carrier's approval to go through for the speech sessions he had been attending through the hospital.  Jonah has made improvements with his speech; unfortunately he is still lacking greatly in this area.  I believe I need to do more research in the hopes of finding other methods to help him, but, in the meantime, he will be having a pharyngeal flap revision to hopefully resolve some of the physical obstacles he faces in trying to form words and make sounds.  His jaw structure and placement of teeth are also an issue so I will also be looking into ways to help him do exercises to strengthen his mouth/lips.  Simple mouth movements like puckering or manipulating the lips to make a whistling sound are very difficult for him, thus inhibiting his ability to make sounds such as for the "w", "d", "t", "f", "ch", "th", and "s".     

In addition, we can tell that Jonah has grown, which, of course, is wonderful and expected.  Unfortunately, the growth is affecting the overjet of his upper jaw compared to his lower jaw so we are already seeing a regression of the mandibular jaw distraction he had completed just six months ago.  This will be addressed sometime in the future, but until then, we are praying for improvements from this month's surgeries.  Pray with us, will you?  We'll keep you posted!!  



Thursday, January 5, 2017

Rees

Hello Friends! 
We have some unfortunate news to share regarding the progress of healing for Rees.  About six weeks ago, we requested that a CT be done on Rees' skull before the end of the year.  We did this partially because of rules of our medical coverage and also because we wanted to see what kind of progress his skull has made this year.  He was originally scheduled for hardware removal surgery on January 26 and based on what we could "feel" on the outside of Rees' head, we wanted to have a picture of the inside to correspond with our suspicions.

Below are several photos from Rees' CT scans in 2016.
  
         Prior to any surgery         February 1, 2016                 March 28, 2016                        
You can see the changes that took place in each photo.  
The February scan reveals the changes that were made during Rees' first reconstructive surgery nearly a year ago.  Between the February 1 and March 28 scans, Rees had four more surgeries due to various complications.  The March scan revealed that Rees was experiencing quite a lot of "bone resporption", which very simply means that the bone cells were breaking down the tissue of the bone.  

It's amazing that we can see a person from the outside and not really know what is happening on the inside ... millions of different actions, reactions, impulses, and processes all occurring at the same time. 

The photo below is from the scan that was done a couple weeks ago.  Technology is truly inspiring and we can be so blessed because of it in so many ways.  It can also be a curse and a detriment to one's own STRESS-o-meter.


December 22, 2016

While the bone resorption has mostly resolved on its own, there are several new issues that present a problem.  Rees has developed a good amount of bone above his eyes, sort of providing him one large bony unibrow (which, by the way, is likely a good thing because of the numerous times he has tried to test the durability of the surgeon's work) BUT he has failed to produce bone on many other areas of his skull. 

See all those open spots??


This is what it looks like from the inside of his skull looking out.
(It sure is amazing that sixty seconds halfway inside the large doughnut machine can provide such an intricately, detailed image!)


Yes, there are portions of Rees' skull that are completely open!
So, that is one of the problems ... 

... and then another problem is the fact that Rees' forehead is "collapsing" and causing "intracranial crowding".

 Let me tell you, ... I was quite alarmed when I first viewed the scan images.  I'm sure that doesn't surprise you one bit, does it?

I mean look at these two photos ...
... the first one is from March 28, 2016.  
Rees' forehead was more rounded, wasn't it?

And now ... well, now his forehead appears to be flattening out against his sweet little frontal lobe!!  There seems to be some debate about whether or not Rees' brain is being affected by the changes in his skull.  But there is one thing that is certain, the collapsing bone needs to be addressed and will likely interrupt the previously scheduled surgery that is scheduled for later this month.  
There is the possibility that Rees will have something called Frontal Distraction, which is similar to the procedure that Jonah had earlier this year (except that Jonah's distraction was for his lower jaw).  This is more new territory and we do not have specifics or solid plans as of yet.  That is currently being assessed and Rees is functioning just fine for the most part ...

... for the most part ...

... well, that leads me to the next problem that we've been dealing with.

Since Rees had the lumbar shunt placed, he has had about a dozen bouts of unexplained illness.  He suffers random headaches with episodes of nausea and vomiting.  Most of the time, the episodes only last for an hour or so, ... maybe two.  But on two occasions, it lasted all day.  We attributed the episodes to the shunt and the sometimes chance of over drainage of CST (cerebral spinal fluid).

The neurosurgeon says that the shunt should come out and it should come out prior to his surgery at the end of this month.  There's more to share but it's taken me days to formulate the words for this post and there's always more to share, so for now ... I'll leave you with this goofy photo of Rees so you can exit this post with a smile ... with the words from our favorite surgeon, 
"meantime not to worry.  all will be well."


Besides ... God's got this!
Yep, I only need to say that over and over ... and over ... and over ... 

God, the one and only—
    I’ll wait as long as he says.
Everything I hope for comes from him,
    so why not?
He’s solid rock under my feet,
    breathing room for my soul,
An impregnable castle:
    I’m set for life.

My help and glory are in God
    —granite-strength and safe-harbor-God—
So trust him absolutely, people;
    lay your lives on the line for him.
    God is a safe place to be.
Psalm 62:5-8 (MSG)

Christmastime

Well, I will just say ... this holiday season seems to have gone by so quickly!  

I cannot believe how fast the time went.  Now here we are and 2016 is no more and we've begun a new year.

One thing we did on the holiday break was go to the Rotary Botanical Gardens in Janesville.
  

They set up an enormous display of lights throughout their gardens. It's quite pretty and very affordable.  So, here are some photos ... ENJOY! 



Our dragonflies ...
















Indoors, they have a snack area with cocoa, cider and large Christmas cookies.  They also have a photo spot (below) and on certain evenings they have live reindeer while there's a Santa visiting with the children inside.  



Molly's foster family in China sent their annual parcel to the family.  It was STUFFED full of goodies for the the children.  They sure know how to pack a box!

And, yes, there was even some present opening ...

... by our BIGs ...



... and our littles ...





We hope your Christmas was truly BLESSED!  
Happy New Year to You and Yours!!

Monday, December 12, 2016

Well, here we are ... Christmas is upon us.  It has come so quickly!!
We got our tree up Thanksgiving weekend and we think it looks lovely.  


The children are, of course, excited for Christmas to be here ... they are also eager for the break from school and playing in the snow, watching Christmas movies and baking cookies.  


I know I've shared this before, in one way or another, but continue to keep this little guy (Jonah) in your thoughts and prayers.  This kid is definitely working SO HARD at EVERYTHING.  I am so surprised that he doesn't just CRASH at the end of every day.  He is diligently working to cram SEVEN YEARS of missed learning and experiences into RIGHT NOW.  Every time he accomplishes a new task or achieves another skill, he's thrown several more.  We are so proud of how far he has come and we are so grateful for the students and teachers who work with him and guide him but sometimes we have to remind others and even ourselves to be patient and understanding because sometimes it's hard to remember that he hasn't always been here.  


It was only a year ago that these little guys were living on the other side of the world, in a completely different type of environment, speaking a completely different language.  These two boys have experienced MORE in one year than many people have in their entire lives.  It amazes me how much has really happened this year.  Please continue to keep Rees at heart as well.  Ever since his last surgery, which was physically much more successful than ANY of his previous surgeries this year, he has been a little more irritable, a little less resilient, a little more sensitive, and a little less pacifying.  We're not really sure exactly WHAT the issue is but we notice the change in his behavior and demeanor and we're concerned.  We can't begin to know how he has processed everything that has happened to him this year but we just continue to love him and care for him the best that we can.

Early this month we attended a memorial service presented by the funeral home we utilized when my mother passed in July.  The service was to honor all loved ones lost in 2016.  I really thought this was a nice way to take notice of the fact that this year is the first Christmas without our mom and Grandma.  


There was an enormous tree at the front of the room and it was covered with angel ornaments, one for each loved one who passed.  During the service, the tree was "lit" and it shined out so brightly in honor of our loved ones.  At the end of the service, the families representing were able to collect the ornament to take home.


My mother loved Christmas and this one, in particular, is going to be very difficult to spend without her.  But the memories of Christmases with her will hopefully keep us thinking of her and lovingly remembering her. 


We decorated the memory garden and we know she would have loved it!


For St. Nick, the children were sent gifts from a special friend and they were very excited by the surprise!


Each of them was so happy with their gifts!


Each seemed perfect for them!!


It was fun to see them so delighted!


Special friends are just ... SO SPECIAL!!!


Then there was the elementary school holiday program ... 

... this was the FIRST for Jonah and Rees!!


... the kids did a great job singing ...


... and playing ...

We were so proud of their efforts!!


Then because most of the kiddos were dressed up, we decided to take advantage of the moment and snap a few photos of their gorgeous selves!!


... the boys!


... the girls!




Another special someone in our lives sent these adorable "Rudolph" noses for the boys to play around with.  Well, ... we didn't think too much of it but apparently Rees took our request to "wear" the nose as a way to make fun of him/his nose.  Even though he's been with us for a year now, we have to remind ourselves that we cannot take for granted and just assume that he understands that we love him exactly the way that he is and that his nose is not an issue for us.  This photo was his very good (but very staged attempt) at allowing me ONE PHOTO if his Baba would do it with him.  Our little buddy was upset for hours and even became physically unwell which we have recently pieced together as his reaction to psychological distress.  We promised him that he would never have to wear the nose again. 


These two were MORE THAN HAPPY AND EXCITED to wear the noses and dress the part.  So, all was NOT LOST!


Even Jax was getting into the spirit ...well, not really ... but he was such a good boy to humor us!!


And in case any of you are wondering ... YES ... we have A LOT of snow up here in the frozen tundra!  


We're okay, though ... 


... it's basically a white winter wonderland!!



Stay tuned for more Christmas and Winter photos and stories!!