This week has been an exhausting week.  Yes, "exhausting" has to be the word I use ... well, because ... I. AM. EXHAUSTED!  Tell me, friends, ... am I EVER N-O-T going to be THIS EXHAUSTED??

On top of the Rees situation and Jonah's surgery, Brian, Molly, and Brynn all had severe colds that are slow to vacate.  And ... I ... with a roll of my eyes ... threw my back out from S.N.E.E.Z.I.N.G!  How P-A-T-H-E-T-I-C!!!  This is the second time in the last couple months.

(no, you're not getting a photo of me like this ... but I basically feel the same as this photo appears)

So, let's see.  My updates, recently, have been likened to a roller coaster.  At least, that is what it feels like to me.  Which is why I haven't updated at all in the last few days.  It seemed like as soon as I posted one thing, the opposite thing would happen the very next day.  This went on all week.  My last update was on Tuesday.  Rees came home from the hospital (again) and seemed to be doing GREAT!  That changed on Wednesday when he again fell asleep in school after only being there for two hours.  I went to pick him up and I brought him home and he vomited several times that day.  I was really beside myself.  My previous HIGH came crashing down.  For a reminder of that day, you can CLICK HERE.  So, then I was really confused and frustrated and uncertain.

Jonah's surgery was scheduled for Thursday, 1/26.  But because of the situation with Rees, I was not able to go to the hospital to be with Jonah.  I stayed home with Rees and I kept him in bed, mostly flat all day.  I only gave him very small bits of fluids and food at any given time and I worked very hard to keep him calm and still.  I stayed with him the entire day and monitored EVERY action and reaction.  This was pretty easy to do since it was painful and difficult to move around too much due to my back attack!  I had been keeping notes on what was happening and continued to do so.  I then would send to the doctor's office each day.  

On the flipside, Jonah did EXCELLENT at the hospital!  He was so BRAVE.  He didn't even cry once and he was really proud to tell me so.  He went calmly and willingly and had no issues.

The surgeon was really happy with the way things went.  Jonah had plenty of tissue to work with and the inside of his mouth looks very different now ... and what I mean by that is "more normal".

He WAS a little wiped out ... BUT ... he really did very well.

They had him stay overnight just to make sure that he would adjust well to the changes inside his mouth, which affect not only speaking, but swallowing and even breathing.  It's all very interesting and too bad it is a location that doesn't really appropriately allow for before and after photos.  

Jonah was able to come home after the one night and he continues to do well.  His voice has actually changed a little and we can notice a difference already in some words that he is able to enunciate better.

And then back to Rees ... well, for the last two days, I have kept him pretty low-key.  He is eating more and drinking more and starting to seem like he is back to normal.  I am afraid to hold my breath on that one, though, lest I should die a slow and painful death.  But I am pleased to report that we are now moving towards three non-symptomatic days.  

When Neurosurgery seemed as though they had washed their hands of the situation (which is really ridiculous as this had all occurred in proximity to the removal of the lumbar shunt), we were referred to GI (gastroenterology).  I have been a strong advocate for my little guy so ... yes, they got him in right away (as opposed to the first opening in mid-March) and we met a kind-gentle- teddybear-kind.of.doctor and if I really thought that Rees had a GI problem, Dr. Martinez would be exactly the doctor we would want treating him.  He was very thorough in his questions and looking at Rees' medical situation and history over the last year.  There are a few simple steps we are going to start with just to easily rule out some GI issues and we'll follow up with Neurosurgery, as well as GI.

Beyond that, Rees still needs his craniofacial surgery and the appointment at the beginning of the week provided a little more information into his future medical needs.  At the moment, the hardware removal and bone graft are postponed and the surgeon is creating a new plan for Rees.  There's a lot going on with his skull bone(s).  

To start, the tumor (hamartoma) is still growing.  When we first viewed the CT images, we thought the overgrowth of bone right above his eyes was just "overgrowth" of bone, which essentially it is, however, it is because there is still TUMOR inside his bone.  

Then the other issue is related to Rees' forehead collapsing.  The surgeon is considering fronto-cranial distraction.  This would be similar to the distraction that Jonah had done to extend his lower jaw.  

The other issue that we have to deal with and consider going forward is that the craniofacial surgeon (who we have been with for the last ten years) is retiring (how dare he?) at the beginning of July.  We are not thrilled, but we knew the day would come and actually have wondered about it for the last few years.  The surgeon is going to do as much of the BIG STUFF that needs to be done before he retires and that is dependent on how each of them responds to those things.  With Rees, we have had multiple major setbacks so that means there is a lot to do in not very much time.  We know, of course, he will do his best to accomplish as much as he can and we pray that we will not continue to be dealt the complications.

In the meantime ...

I'll still keep trusting. -  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.

I'll still keep waiting. -  Wait for the Lord’s help.

    Be strong and brave, and wait for the Lord’s help. - Psalm 27:14 ncv

I'll still keep being "still". -  Be still in the presence of the Lord,

    and wait patiently for him to act. - Psalm 37:7 nlt