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)
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