Hi Friends!

We're still here ... just hanging out and waiting "patiently" for healing to come.

Well, I guess we really are ... what else can we do?

I've been taking less photos of Rees lately; I apologize for that, but honestly, it's a little difficult to take photos with how he's been looking the past few days.  

All in all, he's doing a lot better. 

Today (Monday), the drainage from the incision began again (JUST AS WE ARRIVED AT CHILDREN'S HOSPITAL FOR REES' CT SCAN) and it was flowing quite heavily ... so much so that the Imaging Staff were really concerned.  They gave us a box of tissues and a wad of gauze to help.  In between the Scan and the follow-up appointment with the Surgical Team, we had about 35 minutes so we took a little snack break.  I had to have Rees lay down on my lap to help counter the gravity effect on the drainage so he could eat a few of his pretzels.

We saw the surgical team and they think Rees is looking pretty darn great ... considering what he's been through.  I guess I agree with them when I take a moment to assess all that he had done.  They said that the drainage from the incision is not typical BUT that it is better (if he is building up that much blood/fluid) for it to come out than to stay in where it increases the risk for infection.  Of course, the fluid stopped draining just before we saw the Team and then started back up again as we were leaving the hospital campus.  It continued to drain (but a lot more slowly) for the rest of the day.

You may notice in the above photo that Rees's skin around his nose is a purple-ish color and, if you look closely, has scales and/or what appears to be flaking.  I asked about this too and they believe it is the skin's reaction to the allergy to the ointment that was being put on the area.  He had started blistering along the incision and we were told to discontinue the ointment.  So, basically, the skin was damaged and is now likely going to peel as it heals itself (similar to severe sunburn).  Due to the reaction that Rees' skin had to the surgical procedure and the ointment, the Team put him on the surgery schedule for Wednesday (2/3).  He is scheduled for a "Wound Revision".  The actual definition for a Wound Revision is as follows: Surgery performed to replace or compensate for a failed implant (as a hip relacement) or to correct undesirable sequelae (as scars or scar tissue) of previous surgery.  In addition to cleaning out the wound and revising the damaged skin, they are considering "backing off" the bone graft that they placed to form his nasal bone.  Because of the sensitivity of his skin and the reaction he is having, there is a chance that the graft can cause further damage to his skin.  They won't know for certain until they go in to do the other "housekeeping items" but they (MAY) move the grafted bone up and just temporarily place it on the forehead (under the skin, of course).  Yes, this would cause a noticeable bulge on his forehead but I was assured it would be temporary until they can re-position it nasal bone once again.  We are praying that this will not be necessary.

Here's our little guy this evening.  

We have to continue taping his "good" eye in the hopes that he will force his other eye to regain its strength and normal position.  

It is so evident that this is difficult for him but he IS making an effort.  He has shown us several times that HE CAN move his eye into position and hold it for a few seconds.  He just needs to build up the eye muscle and by taping his "good" eye, it prevents him from lazily just relying on that one eye.

Now to give you a quick update on Jonah.

Here is a "presentation" we were given of Jonah's face and mouth.  

(I guess I am inadvertantly providing free advertisement for the Orthodontist office that is working with our Craniofacial Surgeon.  I'm not necessarily opposed to this, however, at this point, I cannot actually endorse it ... it's just to soon to do so)

So, yeah ... there's A LOT going on in Jonah's mouth.  It's fascinating and heartbreaking at the same time.  His "Jaw Distraction" surgery is scheduled for March 23.  By this time, all of the necessary orthodontic appliances will be "installed" and ready to support the "distraction" devices that will be surgically implanted.  

The procedure is explained from http://www.seattlechildrens.org/clinics-programs/craniofacial/services/distraction

Distraction osteogenesis is a procedure that moves two segments of a bone slowly apart in such a way that new bone fills in the gap. In distraction osteogenesis, a surgeon makes an osteotomy (break) in an abnormal bone and attaches a device known as a distractor to both sides of the osteotomy. The distractor is gradually adjusted over a period of days or weeks to stretch the osteotomy so new tissue fills it.  Once the bone is in the desired position, it is held in place and the regenerated tissue is allowed to heal and turn into new bone. The method forms a longer bone from a shorter one.

A child's parent or guardian turns a screw on the distractor after they have returned home from the hospital to stretch the osteotomy.

The stretch is so slow (generally about 1 mm per day) that it does not usually hurt the child. Older children say that the stretching is less painful than braces or orthodontics.

What is amazing is that the stretched, regenerated tissue forms into new bone over the next two months by itself. Once the new bone is strong enough, the surgeon removes the distraction device during a very short second operation.

 We'll share more as it gets closer and we learn more about the procedure/process.  In the meantime, here is a little entertainment provided by Jonah.  He loves balloons and found that a balloon would dance when it floats by the microwave vent when running. 

I'd also like to give a BIG shout out to my Mommy and Daddy for the crazy large care package of food stuffs and the gift certificates.  THANK-YOU, THANK-YOU, THANK-YOU!!  

My parents are elderly and have had a lot to deal with in just trying to take care of themselves but wanted to DO SOMETHING to try to help us!  So SWEET!!  

We are admittedly VERY TIRED!

But GOD has been showing HIS LOVE for US over and over again through so many wonderful people ... gifts of meals, gifts of money and gifts of time.  

WE REALLY CANNOT SAY IT ENOUGH BUT WE ARE SO THANKFUL, SO BLESSED, SO AMAZED ... TRULY!

TO EACH AND EVERY ONE OF YOU, WE PRAY THAT THE BLESSINGS ARE MULTIPLIED UNTO YOU