Updates on Jonah and Rees

It's been just about a week since Jonah's surgery.  

For the most part, he is doing amazingly well!  We didn't really know what to expect for sure as this is new to us but we are so surprised that he really only seems to have slight discomfort and that is mainly when we are cleaning around the distractors and his incisions.  

Otherwise, he's been pretty comfortable and has even slept right on the distractors as he tends to sleep on his side.  The only thing that signals to us that this may be bothering him is that he's been whimpering and crying in his sleep since the surgery.  We assume he is having bad dreams but are unable to talk about this with Jonah as he doesn't know how to communicate this type of thing or those words yet.  In the meantime, we rub his head or back lightly and whisper that it's okay and he's a good boy.  We're keeping on eye on his incisions as they have been slightly reddened and 'oozy'.  So far nothing significant has occurred, for which we are thankful, but we were able to have his oral antibiotic refilled today as a precaution. 

The turning of the distractors began yesterday.  Jonah was seen at both the orthodontist's and the surgeon's office and the surgeon made the first turns.  Jonah was very apprehensive, however, he didn't even seem to feel the turning, which ultimately was a relief to him.  

The turning is done with the object shown in the photo below.

It's called a 'key' or 'driver'.

It has a small node on it's end that fits into a space (like a keyhole) located on the distractor.

Once the 'key' is in place, we just push downward until we see the next 'keyhole'.  Each movement is 1/4 of a millimeter and we make four movements to complete an entire rotation or one millimeter.  

By the end of the week, we might actually be able to notice a difference in Jonah's appearance.

The distractors and all the appliances inside his mouth have really caused him to take a step backwards in his ability to speak, eat and drink, and to swallow his saliva; it's really been a challenge for him but we know that it is only temporary.

You know, before the adoption of the boys, we anticipated that Jonah's medical needs were going to be highly complex and challenging.  We expected that Rees' medical situation was more severe than our daughters' but we went into all of it with the assurance of knowledge and experience.  

Well, the last ten weeks have been nowhere near what we expected and we continue to walk the path of uncertainty.   While Rees IS getting better, his healing is slow ... strangely slow ... and it is unpredictable.  

We are SO THANKFUL and RELIEVED that he no longer has THIS to deal with ...

I'll spare you the photos showing the half inch hole between his eyes and the bone coming through the skin ... but we're SO THANKFUL that has passed.

We're SO THANKFUL that the fluid that was building up and wreaking havoc on Rees' face has FINALLY seemed to stop! 

But what we are dealing with is that although the surgeons closed the hole, Rees' tissue and skin has essentially split open again, though not because of any holes but due to "granulation tissue."  The granulation tissue is new tissue that is being generated, which is actually good, but he is generating A LOT of it.  

He has really been quite the happy boy throughout all of this!  

He's such a trooper ... even when he's afraid! 

This is the most recent photo of the wound.  

The doctors do not know why it is taking so long to heal but they do say that the tissue is "healthy".  I always question this because it looks "icky" to me but they assure me that "meaty" is good.  And yes, ... "MEATY" is exactly what it looks like to me.  I clean it twice a day and have taken literally dozens of photos each week.  While the photos may appear to show what looks similar to a severe scrape, this wound is actually soft, spongy tissue.  It "gives way" as I clean it and pulls forward when I remove the dressings.  I will be overjoyed when it finally firms up and closes up!!

Yet, there are other issues that continue to arise with our sweet boy.

He had another CT scan on Monday to determine progress on the healing of his bone.  

To give you proper perspective, the next few photos will remind you and show you the progression of how his skull has changed over the last ten weeks.  

This was Rees' skull prior to the first surgery.

This was Rees' skull one week after the first surgery. 

This is what Rees' skull currently looks like.  

Unfortunately, there are more issues now.  

There is collapsing and disintegration of Rees' skull bones, which to me is hugely alarming, but to the surgeons, is not surprising.  

What??

Again, didn't see this coming ... we are unfamiliar with this situation ... and as it stands, it seems that we just have to wait it out for the time being.  

NOW THAT IS SOMETHING I AM NOT SURPRISED ABOUT!

I am including this view of Rees' skull as well.  

It gives another view of the changes in his bone but also you can see the nasal bone piece that they removed during his last surgery "and tucked away for safe keeping".  

Remember that?

Unfortunately, it is apparent that this piece of bone seems to be degenerating as well.   

Rees will need more surgery ... SOON ... but they need to wait for his wound to finish healing and close up.  They say that once that happens, they will add him to the surgery schedule.  

In the meantime, they plan to release both boys to go to school next week!

Now THAT really is GOOD NEWS!!!

Both will be restricted from gym class and recess due to the obvious risks but it will be so good for them to be back, especially Rees.  We'll be working on a new bandage type for the occasion over the next few days.  Wish us luck ... and please keep your prayers flowing!