Family, Friends, Prayer Partners ... 

I know that some of my emails have been choppy; I apologize.  So, I wanted to try to give the best update I can as it is at the moment.  This has been another rough day with things not going as we hoped or planned regarding the 4th surgery our boy, Rees, has had in the last five weeks.

In the last five days, Rees developed a pretty significant hole in the tissue between his eyebrows.  As of yesterday morning, it measured 1/2 inch in diameter and was as deep as it exposed the titanium hardware attached to the nasal bone graft that had been in place.  I don't think some of you'd like to see that photo, but maybe the photo of his skull with the bone graft will give you a good idea.  The hardware that was exposed was the T-shaped one in the photo below (in between the eye sockets).  

The bone graft had to be removed and so what they did was open a small portion of the head incision and they slid the bone under the scalp and the plan is to keep it there 'in waiting" for up to three months while Rees' other issues are taken care of.  They did close the hole and cleaned the area, however, the area kept filling with fluid as they worked.  This lead them to believe that there was, in fact, a CSF leak, as they had thought previously.  So they called in a Neurosurgeon to evaluate and then called us in to consult with us.  

To get right to the point, the neurosurgeon inserted a lumbar drain so that the CSF has somewhere else to go, thus allowing the fluid not to build up in his head and face.  The thought behind this is that then the source of the leak would be able to heal and the tissue behind the surgical incision would be allowed to heal.  Now, here's the "kicker" ... they are still NOT EVEN CERTAIN that the fluid that has been building up is CSF.  Now, the fluid that is draining from his back is definitely CSF because they inserted the tube into his spine to purposefully drain it.  But below is a photo of Rees from last night as he was resting in his bed.

The "bump" in the middle of his incision is basically a wad of skin that was placed two surgeries ago as a defence.  The incision at that area actually has healed and they were able to remove the stitches there.  Above that area and below that area Rees has new stitches where they closed the hole and repaired the skin where the bone was coming through.  

The doctors came in this morning, both the Plastics/Craniofacial team and the Nuerosurgeon, at different times, and they were pleased and stated that he looked great and they think they got to the bottom of it this time.  

I am sorry ... but I am not so confident.  This is so hard because all I do now is wait for the "bad" to happen while I hope that God will heal my sweet boy once and for all!!  Below is a photo that I just took, now fifteen hours later, and that bumpy area is changing color and swelling and the healed incision line is looking like it is being slightly stretched ... JUST.AS.IT.HAS.DONE.BEFORE!!!  I have already expressed my concern and insisted he be looked at again, which is evidence that my patience is wearing thin and frustration is nipping at my heels.  

We need a MIRACLE people.  The doctors have admitted that they are in unknown territory.  They have not had a patient like Rees before.  This is clearly and entirely in God's Hands and I am trying so hard to "wait patiently for Him to ACT."  

I know that there are literally hundreds of people praying for Rees.  This is wonderful and supportive and encouraging to us ... and yet, at the same time, disheartening as it appears that Rees is not improving.  We don't know what God is doing and that is SO HARD.  My devotion today was from two Bible verses, which are as follows:

We don’t yet see things clearly. We’re squinting in a fog, peering through a mist. But it won’t be long before the weather clears and the sun shines bright! We’ll see it all then, see it all as clearly as God sees us, knowing him directly just as he knows us! ~ 1 Corinthians 13:12 (MSG)

My response is to get down on my knees before the Father, this magnificent Father who parcels out all heaven and earth. I ask him to strengthen you by his Spirit—not a brute strength but a glorious inner strength—that Christ will live in you as you open the door and invite him in. And I ask him that with both feet planted firmly on love, you’ll be able to take in with all followers of Jesus the extravagant dimensions of Christ’s love. Reach out and experience the breadth! Test its length! Plumb the depths! Rise to the heights! Live full lives, full in the fullness of God. ~ Ephesians 3:16-19 (MSG)

Every time I read the verses from these devotions or the verses being sent to us in emails and comments and prayers, I try desperately to cling to them and to pray them and to TRUST and be at PEACE.  When I struggle with this, I feel worse because these WORDS are meant to free the believer, to strengthen the weak, to encourage the suffering ... so then I doubt my own faith.  

I wonder what God's trying to teach me ... and then I scold myself for taking so long to learn it.  This is definitely a roller coaster as I soar with new strength and renewed faith one moment and then plummet to the depths with doubt and discouragement the next.  

LORD, thank-You that Rees has maintained a normal temperature and that infection seems to be kept away.  Thank-You for blessing us with each of our children and protect their hearts, each of them, the BIGS and the LITTLES, that each would find YOU in this situation as we strive to feel your presence.  In the name of JESUS, Your Perfect Son and my Savior, by the POWER of His Precious Saving Blood, Wash over Your beautiful creation, Rees, and HEAL his body.  Your Blood was meant for all, including Rees, and I PRAY to YOU, HOLY GOD, with all my might, from the depths of my soul, that You would Touch Rees and Heal him.  TODAY.  In Jesus' Precious, Holy, Redeeming, Healing Name, ... AMEN.