Day 576 - January 12 - Daniel 10

The thought of writing on this subject originally came to me over a year ago, and the fact that the first title of this post was "Day 179" and was saved on December 10, 2008, tells you that it's been fermenting in my brain for a bit! I've come back to it now and again, but it never gelled the right way. So, having been referred to the passage again this week, I'm trying again...

Waiting. It seems we do a lot of that right now. It seems that's all we do; day in, day out, no matter the routine, we wait. I guess it's not entirely true - waiting isn't all we do. We also doubt, and pray, and cry, and question, and wonder where God is, and hope, and console each other, and try to be encouraged, and - well, you get the idea. It's been 576 days since our cry first went up to God for Connor's healing, and here we are, waiting.

Some people say that we should just accept our fate and deal with it. Their implication is that Connor will never be well again until Jesus returns.

Other people say that they personally are convinced by God - that they know - that they're going to see Connor walk, and run, and leap, again in this lifetime.

And in the middle of it is me, who has not been given any certainty about it, either way. It seems that I'm to be given the task of trusting God's word about this for an indefinable period of time. A period of time that, I can tell you, is a minimum of 576 days long, and which (if I believe the first group) will stretch months and years into the future, or (if I believe the second group) can end today.

Now, I can't explain any of God's reasons for working this work. All I know is that it's a good plan, since according to Psalm 25:10, "All the paths of the Lord are steadfast love and faithfulness". So what does it mean that we continue to wait?

Well, I'm convinced that God has some special purpose for Connor for which this time and situation are critical. I'm also convinced that His plan meets with disapproval from a certain common enemy, if you get my drift. Allow me to tell you a story -

Back in the day, the prophet Daniel was mourning, fasting and praying for three weeks. This story is told in Daniel 10, BTW. At the end of those three weeks, he was taking a walk by the Tigris river when a vision came on him (interestingly, the vision didn't appear to the people with Daniel - they were filled with a sense of dread and ran away, so they didn't see it). In the vision, an angel appeared to Daniel and said a very interesting thing. In Daniel 10:12-14, the angel tells Daniel that from the first day he began to pray, God heard him, and sent this angel to Daniel. But then he tells Daniel that he (the angel) was delayed by "the princes of Persia" for 21 days, until Michael the archangel came along and cleared the way for this other angel to make it to Daniel to convey his message.

So, if I've got this straight...

1 - Daniel starts praying and fasting.
2 - God hears Daniel's prayers immediately.
3 - God immediately dispatches an angel to take a message to Daniel in response to his prayer.
4 - A spiritual delaying tactic is employed against the angel by "the princes of Persia", which I take it means satanic forces in this context.
5 - After 21 days, the archangel Michael show up to help get the messenger past the enemy and to his objective.
6 - The angelic messenger arrives and delivers his message.

So, two things - first, there are greater things going on around us than we can see, sense, or even imagine. And second, what was Daniel thinking on day 20? Was he wondering if God even heard him? Was he oh-so-patiently waiting for God's response? Did he doubt how effective his prayer and fasting was?

I don't know. I know I've thought all those things, and more, over the last 576 days. But it turned out that God not only heard on Day 1, He answered on Day 1. Daniel was just waiting to see something that had already happened. He was waiting to receive a gift that had already been given. He was trusting that he had received a word from God 21 days ago.

Which reminds me of a different passage -

"Therefore I tell you, whatever you ask in prayer, believe that you've received it, and it will be yours."
- Jesus, Mark 11:24.

Keep believing. Keep praying. He WILL answer.

E.

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Day 265 - March 6 - Yet another prayer request

I just got notified that our insurance company has refused to pay for Connor's second ventilator "because it's not medically necessary". For those who might not know, we have two ventilators - one next to the boy's bed, and one installed on his wheelchair. Apparently we're expected to dismantle the vent while he's reliant on it and move it across the room to the wheelchair and install it there each time he transfers into and out of bed. Hmmm.

Apart from what I see as the amazing shortsightedness of this position, I can only wonder what we would be supposed to do in the event that his sole ventilator failed for whatever reason. While I can understand the insurance company's concern (each of the devices costs approximately $40,000), I cannot imagine that the expectation would be that he remain in bed all the time or that we put his life at risk in such a way.

So, this is a callout for prayer support in this particular matter - that the insurance company would not only see the necessity of redundancy in this instance, but also be willing to allow the medicos to direct Connor's care instead of an accountant somewhere. They did leave one loophole, in that they let slip that they wouldn't pay for the second vent "without a prescription". Guess what's next on our agenda!

Thank you for going to your knees for us on this - in addition to the health aspects, the second vent also helps this existence be bearable for us by easing the requirements just a bit. We appreciate your help.

Eric

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Day 73 - August 27 - (Old) News from the Front

Back on the 15th of August, (my bad - senior deja vú - having the feeling that you have forgotten this before) one of our volunteer staff members on ConnorWatch, part of our support team that handles all the requests and coordination, sent me this email and asked me to share it with the family. Now, she meant Eric and Cherié, but by this time all of you qualify as 'family' so I thought I would let Melanie explain it in her own words.

Ok so I wanted to share with you and the family the wonderful thing that happened yesterday. I am playing in a Softball tournament for the Make-a-Wish Foundation. There are lots of folks playing for the kids. Some of the kids even showed up yesterday. There ages range from 2 yrs to 12 yrs. Some of them have hair and some don't. Most just finished their treatments. What an experience in itself but this is where the story gets good.

As you know I have been selling the Connor bracelets to everyone and everywhere. So i thought i would take some with me to this tournament. I know playing for this charity event there may not be a time to bring up my cause but i thought better have some just in case. So on the first day after the game. I sold a few to some friends who i knew would not say no. Yesterday, i was playing again.

After our games all the teams went into the bar/restaurant they have at the field. I had one of his tee shirts on. Some folks were asking me about it, so I started telling them Connor's story. Most ears were perked up at this point and I had the floor. I told some of what the family is facing and how we could lift connor up by supporting him and praying for him. Everyone sitting around bought a bracelet. Even a mother who came up to me and said. "I have a make a wish kid" I know they need our prayers and just know we will be praying. As she bought a bracelet. Wow it was exciting.

I took a break from my speech and took a short walk. I was found by one young gentleman who played on the other team, he told me he attends New Hope Church in Gilroy. He has been praying for Connor every Sunday. This totally gives me some back ground to who I have been praying for and I thank you. Can we pray right now together? Of course I was shocked and surprised by this but took the opportunity to uplift Connor. He prayed so loud and with such conviction. We stood out there praying together. Afterwards we hugged and I thanked him. He looked at me and said, soon as I saw you today the Lord told me I need to speak with you. I was unsure why, but now I get it. Please let the family know I will be praying for them more than ever.

So overwhelmed by this I needed to use the ladies room to wipe my face. When I exited I was met by this very tall buff young man who asked for a moment of my time. He looked into my eyes and said, "I am a man of god. Here take this money. I wish it could be more but it's all the ATM would give me". Please know I will be praying for Connor and his family. Don't forget that miracles happen everyday. I feel that they are on the brink of a miracle. God is good. Praise God. He then walked away. I don't even know his name. What he handed me was $100.00 to add to the Connor bracelet fund.

I was overwhelmed by both of these encounters today. I wanted you to know. I want Cherie, Eric, Joelle and most of all Connor to know how he is touching people everywhere. And through people who least expect it.

I never thought i would be standing at a softball field praying out loud and having folks joining in. This was all for Connor. I hope in someway he felt us speaking to the Lord for him yesterday.

Please pass it along to the family. Thanks Brad.


Peace,

MELANIE

'nuf said. Before you inundate me with requests for the ConnorWatch bracelets, they are currently available through E-ternal Treasures in Morgan Hill. As their website is under construction, contact them by email at customerservice (at) e-ternaltreasures.com or by phone at 1-800-693-8443.

Brad
Michigan

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Day 53 - August 7 - General Update

My mom, in her infinite wisdom, has pointed out that once I mention something on the blog, it becomes important to follow up with it so everyone who is wondering won't do so in vain. So, in an effort to get caught back up (and keep mom off my back), here goes:

- swollen left arm. They think this was caused by his IV failing because they've put so many in for so long. They moved the IV and the swelling has reduced. This would qualify for a long-term prayer request, as they can't continue putting IVs in indefinitely, but they still need to keep fluids etc. moving. Pray that Connor's veins will stand up to the abuse they're receiving as long as necessary, and that the Lord will provide for that.

- lungs/coughs/hiccups/etc. His saturation levels remain relatively stable now that they've put him back on a different vent setting. This setting is normally used when patients are on the rotating beds, and not the regular beds, so they have concerns about whether they can use his speech valve with these settings. He hasn't had any more hiccups of which I'm aware. His lungs still remain clear, although they are always concerned with pneumonia and other infections.

- MRSA etc. He still has this, in an apparently inactive state, so the doctors refuse to release him from isolation. Some of the staff is trying to get the isolation restrictions lifted, so that's an item for prayer. it would be nice to be able to touch him without gloves again!

- how'd he do with the juice and burger? Connor swallowed everything successfully and without trouble. He is currently restricted to one sip or swallow at a time, with one or two swallows between to make sure everything has gone on down. The therapist's concern is that if his epiglottis doesn't work right, stuff can get down into his lungs, risking pneumonia again. She wants to be extra cautious - even though he passed the multiple-swallows test with flying colors, because of his trach she has no easy way of finding out if it's not working right. So she wants to take the process very easy until she's really confident that he's doing alright. She says she'll wait a few days in this mode before she re-evaluates that decision.

So that's the things I can remember. If I'm missing an update on something, let me know. Also, if you want mom's Macaroni and Cheese recipe, you'll need to make more noise. 8-)

Day 35 - July 20 - Good mood

After my post this morning, we loaded up the car and headed off to church. We were lifted and blessed there, then came back to the hospital to see the boy and relieve Granny from her self-imposed vigil in Connor's room. When we got there, our nurse stopped us on the way in to tell us what a great mood Connor had been in all morning. We watched her interact with the boy, lifting his spirits and encouraging him. She had even chosen and worn brightly colored clothes to cheer the boy and lift his spirits. It was fantastic to see such a professional fill her job with such genuine compassion. She was great with him! Thanks, Lord, for giving the boy such great caregivers. That is certainly an answer to prayer.

Connor had a great night, with no incidents with his heart whatsoever. His lungs seem to be responding to the bed, and the RT has seen steady improvement in the state of his lungs and blood gases. He rested well and awoke cheery and in a good mood. His numbers remain good, and the therapists are slowly lowering the O2 percentage as his lungs improve. He's currently at 60%.

He has developed one minor complication that the nurses are addressing. Because of the movement of the beds over the last few weeks, his trach has developed a tear caused by the trach tube rubbing against one side of the trach. They are taking care of it now, but it's still a complication as well as a point of introduction for infection. Please add that to my (seemingly never-ending) list of prayer requests to lift up!

Finally, an interesting blessing. I was speaking with Connor about the bed, and I told him I was sorry he had to be back on the rotisserie. His response? "This bed is more comfortable than the regular bed".

Say what? Turns out he likes being flat on his back, even on the Tilt-o-Bed, more than he likes being propped up in the regular bed.

He'd better not get used to it!

Day 35 - July 20 - Rain?

Rain? In Fresno in July?

As I sit under the awning this morning, rain is falling. Not a lot, but still, it's weird. While the Gramma's cover the hospital detail to give us a few hours before church this morning, I thought I'd share the rest of my "OK, I get it, Lord!" morning.

Remember how I've been discussing thinking about other people instead of my own troubles? Well, I got up this morning and opened the Word to 2 Corinthians 1. Go check out verses 3-11.

Then I opened a devotional book we've been reading. July 2oth's entry? "Sharing the Manna".

I shared with Cherié and Granny my perception that, in moving downstairs to the First floor waiting room, we had isolated ourselves and were only focusing on our own troubles, which in turn was bringing us down. We aren't called to despair over our problems, but to reach out to others in the midst of theirs. I've been failing to do this, averting my eyes to avoid eye contact "because I'm too tired/frustrated/exhausted/whatever to deal with his/her/their issues". What a cop-out.

Pray for the boy today, for his healing and for his continued health. And pray for us, that we would be the hands and feet of Christ to the people around us.

We love y'all. More later.

Day 34 - July 19 - What a day

Well, it's been a full day. First, Connor is back in the roto-rest bed, which is the one that rocks back and forth, but not upside down. He's a bit disheartened to be there again. I told him this isn't a step backward, but rather the next hurdle in the race. Many of the hurdles will look the same - but we'd rather not have to jump over them at all.

Second, the boy crashed twice today, both time with his heart beat dropping to zero. He recovered on his own immediately without drugs or other intervention, but again, this is something we'd rather not do at all. It seems to be the same issue he had before, with his congested lungs causing the nerve that drives the heart to become irritated.

Please continue to pray for Connor - for healing from the pneumonia; for clear lungs; for a steady heart; and, as I recognized today, a working diaphragm. I realized that I had been praying for his lungs to work, but what I was meaning was that he would have control and function in his diaphragm in order to pump his lungs. I know the Holy Spirit interprets for me, but still...

A strange thing happened to me today as well. I was talking to Brad yesterday about trying to get less focused on me and my problems, and more on the people around me. I had told Joélle that I thought I performed better when I was helping other people instead of thinking about myself, and she gave me that "Well, duh!" look, so I'd been giving that some thought. Well, tonight, I was in Connor's room alone, while Cherié ran over to the hotel room to grab a shower. Connor was asleep, and I was trying to be still and know that He is God. I even went so far as to pray that the boy would stay sleeping so that I could focus on being still and not be distracted by anything. I found I couldn't sit still, but that walking slowly back and forth in the room helped me quiet my soul to listen. What I found wasn't anything earth-shattering, but rather a sense that I should prostrate myself before the Lord. I thought "well, I can't do that, people will see me". Then I thought "Would you do it if it meant Connor would walk again?"

"Of course", thinks I, "but it doesn't mean that."

"How do you know?", I shot back smartly.

"Oh, come on - but I'll do it." Then craftily I add, "I'll just draw this curtain here so people can't see in..."

I'm too smart for that one - "Nuh uh uh! That's not what you're supposed to do."

"Well OK, I'll at least kneel." There. That's a pretty good compromise.

So I knelt by the boy's bed, in full view of anybody that wanted to look into the room. And I prayed. Emptily, as it turns out.

Now keep in mind that this is all pretty much just a conversation in my head. But finally I can't take it, and I say "Alright, I will." And I lie down on my belly, face to the floor, arms spread out wide, completely visible from the nurse's station if anybody cares to look.

I say "Here I am, Lord. What do you want from me?"

And the thought enters my head - "Obedience".

Shortly thereafter, Cherié shows up and tells me that the Gramma's are going to revolt unless I go to the hotel and take my own shower (which I guess shows how intelligent Grammas can be...). So as I ride down the elevator, I'm prompted to pray with the three weeping people in the elevator with me. I ask them if it would be OK, and they say yes - so we pray together for comfort and hope after the passing of their mother/grandmother. Then I go take my shower.

Now I come back to the hospital, and oddly enough, I have a new perspective on things. I am suddenly confident in the Lord's provision; I know that He is providing for us regardless of outcome; and I am able to encourage my wife, testify in word and carriage to the staff, and pray with and lift up some of the others in the waiting room on our way back to the tenement on wheels.

Without any doubt whatsoever, I am absolutely and categorically unable to create the mental change necessary to do those things on my own. Has someone around here been praying for a miracle? If you guys can pray an attitudinal change like that into me, would you please aim at my son's healing next?

8-)

Day 33 - July 18 - Pneumoni-again

We've just gotten back to the tenement after getting the boy to sleep. His white count is about three times what it should be, although he doesn't have a fever. The RTs are working to keep his lungs clear, but his most recent chest X-rays show that Connor's lungs are blooming again. I heard one RT say that they will have to decide within about 24 hours whether to put him back on the roto-rest bed.

We really don't want that to happen to the boy again. Would you please pray diligently that he be spared another round on the Tilt-o-Beds and that the pneumonia would be gotten under control without those measures?

I also wanted to quickly mention the wonderful RT we had tonight, and the encouragement she brought to us with her compassion and prayers. God blessed us with her great smile, her willing prayers, and her desire to find out more about Connor's story. Thank you, Lord.

Exhaustion sets in. Please lift up the boy for us. We love you.

Goodnight.

Day 33 - July 18 - More needs

Connor appears to be in the throes of pneumonia again. His white count has skyrocketed, they have started him on antibiotics again, and they've placed his respirator back on the old settings at 100% O2 in order to try to catch it before they have to put him on the beds again.

Connor is dispirited by the prospect of getting back on the beds. Please pray for his deliverance from them.

Day 32 - July 17 - Resting?

Connor had a bundle of visitors yesterday, along with at least three procedures as they removed two arterial lines and changed him to a smaller trach. He is exhausted by all the activity and has been sleeping steadily since last night, and we're letting him rest. The speech pathologist hopes to work on installing a voice valve in his trach pretty soon - maybe even tomorrow. It will be great for the boy to be able to communicate with us completely. Of course, that news is tempered by the nurse explaining (again) how Connor's lungs aren't doing anything but what the respirator does, and (again) expressing her conviction that he will never do anything else because of the level of his injury.

Additionally, since he's been running a fever, they ran some cultures, and his white blood count has doubled. They've started antibiotics again, and it appears he's got pneumonia again. Please pray for him, that he can defeat this pneumonia before he has to return to the beds.

I've heard an earful this month about how great it is to "rest in the arms of Jesus", or some variation of it. Usually, it's well-meaning people trying to encourage us, but I've read of the concept in the words of notable authors like Samuel Rutherford as well. Well, all I can say about the notion is that they are either lying, or I must be doing it wrong. After a month of this torture, I have no conception of rest - I feel like I have spent every waking moment since June 16 in a perpetual struggle to maintain my sanity and the cohesiveness of my family, without respite, without relaxation, without hope.

This morning I awoke in the RV in a state of lockdown after a night of benadryl-induced half-sleep. I lay in the fetal position, unable to do anything except cry out "God help us, God help us" through my tears. After a bit, my sensible wife (along with some mental gymnastics) got me moving, and we got our day started. I limped through my morning until my daughter asked me to walk her to McDonald's to get some sweet tea. I'm astonished at how dense I am, that I don't see through her little schemes!

Now, remember when I told you how much more mature my kids are than I am? Well, we got our tea and she said we should sit and talk for a bit before we went back to the hospital. Then she asked me how I was doing, and we talked for a bit about my fears and concerns. Finally, she told me she needed to tell me something, and said "This isn't about you. It's not about Connor, it's not about us - it's about something much bigger. Connor knows about one person - one person! - who's life has been changed by what he's going through, and he says it's worth it. He doesn't even know all the impacts God is making in so many lives, but he has decided that this price is worth the gain. So try looking at something other than how all this impacts you, and try to look at what God is doing through it instead."

Well, I thought about it. I thought about how my fears and concerns really revolve around how all this impacts me, not Connor. I thought about how the things that upset me most were things that changed all the plans I had laid out for my future. And I realized that what Joélle was saying was true - I was looking at all this from the perspective of how it impacted me personally. I was really being selfish in this. What makes it even worse is how Connor is taking this - with a gracious confidence that God is using him to accomplish great things, and being able to sincerely feel that the price paid is worth the gain accomplished. It humbles me to be this boy's father, and I daily thank God for the man He has raised Connor up to be in spite of me.

So now I'm working on repenting from my selfish attitude, and trying to get on board this new train God has fired up for my family. Like my daughter (the wise one) said, God chose exactly the right person - Connor - for his role. A strong young man with confidence in his God, the will to succeed or die trying, and the endurance to run the race set before him. God has also set aside my family to achieve a specific reason, and although I don't feel up to the task, Joélle reminds me that His timing is perfect - and that it's pretty obvious that God thinks we're ready to face this challenge.

I don't know what the future holds - and that scares the tarnation out of me. I don't know what God has planned for Connor, for my family, or for me. The only true thing I know is that it will work out for good (Romans 8:28), that He is faithful (Lamentations 3:22-23), and He is faithful to complete the work He's begun (Philippians 1:4-6). Everything else is up in the air. I don't like falling. Pray for us.

Day 32 - July 17 - Fever This Morning!

This is Cherié.... This morning we arrived to find Connor on a cooling blanket, he had spiked a fever early this morning of 103*. He had a very hard, but good day yesterday....

Yesterday Connor had all of the arterial lines taken out, a new smaller trach. tube put in, (to, in time, be used for speaking) and they took him off all meds. They are now giving him Vicadin, and something for anxiety through his stomach tube. So many things were done yesterday and so many wonderful friends showed up to visit... it was a great day, but Connor is wiped out this morning. The fever and all the procedures yesterday took a lot from him. But it was a good day.

Today they said that his x-rays show some fuzziness on them... so they are checking for pneumonia again. I about fell over with fear that they would be putting him back into the torture beds again after only two days on a real bed. Please pray that he would not need to go back onto those beds...

Last night God gave me another wonderful morsel of hope....Connor complained that his legs needed to be moved to a better position. The nurse and I asked him how he knew his legs needed to be moved, to which he replied that his heels were hurting!! I wanted to jump up and down with JOY!!! Though he cannot feel me touching his heels, or any other part of his body, he can feel pain, and he can feel it being relieved by me rubbing the foot, or moving the position. I don't understand it, but I will take anything I can get!! The nurses can look cross eyed at me if they want to. I just smile, as I find these things as a sign that God hasn't forgotten us, and will allow my son to walk again, I will hold fast to HOPE!

One day at a time...

As a good friend of mine said.... "Restoration happens a little at a time." I have to remember that, and hold fast to the promise that God will never leave us or forsake us.

I want to share with you a list that I have made to remember the "little by littles". I hold on to these, and hope for the future. God, please restore my son.

In the last four days....
*Off the beds
*Off the meds.
*No pace maker needed still
*Gag reflex happening again
*Pain in his back
*Shoulder and neck movement, though slight
*Cold sensations on his legs, back, and buttocks
*Nausea
*A pinching feeling in his arm that was relieved when moved to a new position
*Pain in his heels

I can never repay or express the blessing you are to Connor, to us as a family, and to me. I know that only in Heaven will I be able to fully express the thanks, love, and debt, I have for all of you. I love you, and I need you. Please do not stop praying, for I know God hears you.

Day 31 - July 16 - Meeting Results

Again, the meeting went just as I expected (Joélle is right - I do sound like Eeyore). The doctor and case worker have told us we need to be prepared to answer the question about whether we are going to try to provide 24 hour awake care at our house, or whether we are going to put Connor in long-term care somewhere.

How do you make that choice? It seems impossible that we could either provide or afford 24 hour care, and it seems equally impossible to even consider locking the boy into a room somewhere forever. They offer no option for rehab, because they believe it to be pointless. The best place they can offer is Valley, and all Valley will provide is training for us to care for Connor, not rehabilitation. So what decision do I make?

Cherié is wrestling with anger that his neck wasn't set immediately. Joélle is frustrated with me because she thinks I'm giving up, and to be honest, I feel like it sometimes. I can't seem to help either of them without upsetting them. The gramma's are trying to help in whatever way they can. And I'm trying to figure out how God can bring glory to Himself by locking my son inside his own head with no way out for the rest of his life.

And all the while, Connor is better than he was - but he still doesn't breathe on his own, and the doctors all say that if he had the capability, it would show up on the monitors. It isn't. It seems like he's just getting well enough to be locked inside his head for the rest of his life.

Our dilemma is that we don't want, or even know how, to plan for such things and also hold onto our hope for something else. Cherié says that it's like planning to turn right even though the warning sign says "left turn ahead". We need some help pretty quick in this department.

Day 31 - July 16 - A lot going on...

Wow, much is happening around here! We got the call from Brad while we were watching the 15th inning of the All-Stars game with Connor - as we waited for the staff to move Connor to his new bed!!! We found out last evening that they were moving him off of the rotating bed, and I haven't seen a grin that big on the boy's face in the month we've been here. Even missing the final play at the plate because of the move wasn't enough to dim that smile! What a blessing to finally get back into a normal bed (it's funny what I consider a "blessing" now, isn't it?). The three of us prayed for the Michigan boys, and every other person we considered at risk, until the staff arrived to switch to the new bed.

So Connor is firmly ensconced in a regular hospital bed, and I'm sure as soon as he wakes up he'll be propped up in it watching TV (for more than every other five minutes, too!), but what a great answer to prayer. We are now praying that God would continue to improve and sustain the boy's lung function effectively to the degree necessary to keep him safely out of any more rotating beds, ever.

Y'all saw Cherié's post with all that was going on yesterday - pretty cool, eh? I wanted to make sure everybody understands where we are so our prayers stay effective, so please forgive me while I reiterate the current condition. Connor remains paralyzed below the neck - he is beginning to feel some bodily sensations, some of which are unpleasant, but has not yet begun to move again or regain high degrees of sensation. One nurse thought she felt his leg move yesterday afternoon, and Connor told us he felt his right hand twitch as well. Additionally, he does not yet have autonomic control of his lungs. During a brief period of time yesterday without the respirator, he was able to make some significant lung action, although I can't tell you how effective or ineffective it was, as I didn't see it. But he did have some response to it, which I take as a good sign.
All in all, much to pray for, although we're hopeful and patiently (OK, maybe not so patiently) waiting for God's timing and healing. The nurse last night warned us that they would now begin lowering the boy's sedation meds with the goal of getting him off the respirator and out of ICU, which will be a difficult and frustrating process for Connor, so please continue to lift him up.

On the home front, I managed to get the RV to Fresno, and I am even now sitting in my new office (out under the awning because I can't get the wireless network inside the tenement). a HUGE "thank you" to my friends David J. and his family for the radiator and for getting the rig up to Campbell, and to Jeff S. and the crew at Tires Unlimited for the installation labor - and particularly to "the makers of WD-40 and one old Okie mechanic who doesn't know when to stop" (Jeff's words) who patiently worked on the frozen thermostat housing until he successfully removed it. The new thermostat and radiator meant that on my drive to Fresno, during the heat of the day, the RV's temperature never went above "M" in "NORMAL" during the entire trip - up the grade, and down the valley with the AC running full blast. I cannot begin to thank you guys enough.

Finally, just because I mention those two guys specifically does not mean we do not appreciate every single one of you for your contributions, your prayers, and your words of encouragement. We simply would never have the time to acknowledge the enormous outpouring of generosity toward us which the Lord is providing through you all. Yesterday afternoon, Cherié and I sat weeping and pouring out our thanks to the Lord for His daily provision to us through this all, and He is using your hands and hearts to show us that. Thank you, thank you, thank you.

Today marks one month in the ICU. May God quickly grant us release from it.

Day 28 - July 13 - Eeyore vs. Tigger

Brad spoke on the phone with Joélle last evening, and observed to her that she was a lot more bubbly than her Dad. She told him that "Dad is the Eeyore of the family, and I'm the Tigger!" Brad commented to me later that she should be posting to the blog, as we could use a more "Tigger-y" viewpoint. I agreed, so now I'm in the process of convincing her to post some of her observations and views of this journey.

Until she does, however, I'll get you up to speed on the boy. I just came out of the room, where he is still on the more normal respirator setting, and his saturation numbers are all fairly good. The RT is trying to lower certain numbers, so he's performing this delicate balancing act to keep the boy stabilized while also reducing the pressures and percentages back toward normal. His X-ray this morning showed "a slight improvement" over yesterday.

The thing that got me today was when Connor kept trying to say something to me, and I couldn't quite get it. It started with "happy", but I was unsure of the rest. Finally, though, we worked it out - he was wishing me "happy belated birthday".

What do you do with a son who, while lying unmoving in a bed, apologizes because he missed your birthday? I told him he didn't need to worry about me, but about himself. He got his "angry" face and said "I don't care about me, I care about you!"

After I could speak again, I told him that he had just given me the best birthday gift a father could get from his son - the knowledge that even now, my son is more concerned for others than for himself. I told him how proud that made me of him, that I could be the father of such a man. That gave me all four of our eyes to find tissues for!

I told this to Granny, and she observed that we could take another lesson from the boy. Ain't that the truth...

Day 27 - July 12 - Specific Prayer

This morning we went up to the boy's room to find him on the thumper - a machine that pulses air into his lungs to break up congestion. If I've told that to you before, please forgive me for repeating myself. I've got a brain like a strainer lately - I pour things in, but most of it drains out the bottom before I can use it.

Anyway, we sat with him for a while, talking quietly, trying to prompt a smile or laugh. it is apparent today that Connor is combating despair. I think that when he is less sedated, the enormity of his situation overwhelms him. He handles it better than I could, but you can see it in his eyes. I don't know - maybe I project some of my own emotion into what I see, but I see a look peeking out of his eyes that I often see in the mirror.

So today, I ask that you would be praying specifically that the Lord would strengthen and encourage Connor for the road he is on. Additionally, I am asking you to battle with us for Connor's lung function and capacity. In order to wean the boy off of the ventilator, he has to have the capability to draw 500ml of air on his own. His current level of function is on the order of 50ml. We are in need of miraculous intervention of an order of magnitude in order to get him off the respirator.

The doctors are skeptical that this can occur. My God is bigger than they are.

Day 24 - July 9 - Struggling through the Slough of Despond

Slough: A swamp, or a situation characterized by the lack of progress or activity

Despond: Become dejected and lose confidence

John Bunyan, in "The Pilgrim's Progress", relates the despair of young Christian, left to struggle in the Slough of Despond, where he was abandoned by his fellow traveler, Pliable.

"Here, therefore, they wallowed for a time, being grievously bedaubed with the dirt; and Christian, because of the burden that was on his back, began to sink in the mire."

Eric, Cherié, and Joélle are wrestling, like Christian, in their own personal swamp of despair. They have just come from a meeting with the doctors, case worker, staff, and a representative from Valley Medical who assessed Connor's situation, and while it is possible the news could have been more discouraging, I'm not certain what that might include.

It is certainly the most negative, hopeless assessment that Eric has ever communicated to me and it is having a devastating effect on the family. Eric is crushed. Connor has not yet been told, and Eric is uncertain what and how they should communicate to him. They are taking a few minutes as a family to regroup and decide what to do next.

"...still he endeavoured to struggle to that side of the slough...next to the wicket gate...which he did, but could not get out because of the burden that was upon his back."

At the very least, Connor will not be moved from CRMC in the near future. The other details we will spare you for now, until Eric and Cherié have had some time to digest and assimilate.

In the interim, lift up Eric and the family in prayer, as they seek the faith to endure what they were not expecting.

"...a man came to him whose name was Help...said he, Give me thine hand: so he gave him his hand, and he drew him out, and set him upon sound ground, and bid him go on his way."

Eric, Cherié, and Joélle are suffering in despair. Lift them up in prayer, and be confident in a gracious God who rescues us from despair, and sets us upon sound ground, and bids us go on our way.

Brad
Michigan

Day 15 - June 30 - Morning Report

Eric just called with a status report.

Connor's condition has worsened to some degree over the night. His oxygen saturation continues to drop as the condition in his lungs deteriorates. While this may just be one of the many dips on the roller-coaster, the medical staff is concerned enough that they have transferred him to a different kind of bed, one that rotates him completely, as opposed to the one that was just rocking him. So now he gets completely rolled over, which sounds like fun if you are 14 and healthy, but not so much for Connor.

As you can imagine, for Eric and Cherié it brings discouragement and despair. God did grant a bit of relief during the night, however, after the staff called Eric at the house at 1:30 a.m., they were spared the sense of urgency to return to the hospital and they were able to pray and doze for the rest of the night. They are preparing to head in as I write.

Pray for Connor's ability to get the oxygen that he needs, and for Eric and Cherié to get the rest and encouragement that they need.

Brad
Michigan

Day 13/14 - June 28/29 - Sitrep

Sitrep. Back when I was driving submarines for the North Pacific Yacht Club, we reported our status by situation reports...sitreps. Everything was abbreviated or acronym-ed, I think it was actually a law in the Navy. So when the phone rang at 'oh-dark-thirty', as we used to say, I dumped about two quarts of adrenaline trying to figure out who I was, where I was, what I was doing there, and how to stop that infernal ringing. Since that core experience was central to my years in the Nav', I seem to fall back on the old, ingrained habits.

Sitrep. It was Eric. Connor has hit another bump in the road. Whenever he gets moved or adjusted, his oxygen saturation drops, and that's not good. It means there is/are problems in his lungs. Complications from the lake water, pneumonia, collapsed lung or lobes, at this point the staff isn't sure, but they are taking x-rays, etc., to find out.

It also means that Connor is being transferred to a rotating (?) bed of some sort that will allow him to be turned, rotated, folded, bent, spindled, and whatever as necessary to improve the situation with his lungs. Though we don't know the specifics, you can bet that it isn't going to be any joy ride, but it does seem necessary.

Don't know much more, other than Eric and Cherié have to struggle with this news, and Connor has to adapt while his lungs are worked on.

Pray for Connor - improved oxygen uptake, clear lungs, no collapsed lobes or lungs, comfort and rest, no depression, and courage to face the next hurdle.

Pray for the family - peace that surpasses all understanding, confidence in God and the actions of the staff, courage to stand beside Connor regardless of what comes next.

Brad
Michigan

Day 6 - June 21 - Last update before bed

We've gotten a bit more clarification about what's going on, and I wanted to pass it on to everyone before I headed off to bed - err, "floor". We're trying to make it an early night and get some desperately needed rest.

The spinal manipulation is slowly moving things in the right direction. Emphasis on the word "slowly". I think the bloodletters are a bit amazed that this process hasn't only taken an hour. Connor is heavily sedated still, so after I prayed and sang with him I took the opportunity to speak at length with the nurse. While she's not the doctor, she was able to give me some general information which sheds some light.

First, the pacemaker only fires off when Connor's heartrate drops below 45. This has happened occasionally, but not often. I was under the impression that it was continuous, so the fact that it is only when necessary comforts me. The nurse tells me that the reason for the erratic heart and lung function is most likely due to swelling at the injury sight, and should clear up as that goes down. Good news.

Second, the motivation for aligning the spine is not to align the spinal cord, as I had supposed. Instead, it is to align the vascular system in that area. They know there is vascular damage - the pinched vertebral artery, the blood clot - plus the potential for the veins and arteries to have stretched during the injury, with a possible weakening of the vessel walls. This means that they need to evaluate the damage and repair it as necessary - to them, the spinal stuff is of secondary importance.

Cherié, Joélle and I, as well as the many people here with us, have been given great opportunity to minister to the families of many of the other ICU patients. It is exciting to see how people become much more open to hearing the grace of God when they come face to face with such devastation in their lives. Pray for us to be effective ministers of His grace to these families who must share this journey.

God bless you for your prayers.

Day 6 - June 21 - Saturday Night Prayer Requests

I just got off the phone with Eric... we had a two minute conversation. He and Cherié were in the middle of some time with the family of one of the boys in the unit next to Connor.

• Pray for that boy and his family. They had a very rough day. Pray that Eric & Cherié can be just what Christ needs them to be for this other family.

• The Doctors are still attempting to use the traction to manipulate Connor's spine. Pray that it works. Ask God specifically for it to work so they won't have to attempt it manually.

• Eric mentioned concern over Connor's vascular system. Pray over this for Connor.

• Eric mentioned the possible need for stents. I would assume that this would be for the damaged artery in Connor's neck, but I'm uncertain. Pray for the Doctors that they will be wise as they make these decisions.

• Continue to pray that the blood clot would no longer be an issue.

• Eric did say that Conner is resting... as much as someone can rest with their head three inches off the pillow due to traction. Pray for rest for all of them.

Goodnight from Virginia,

Kent

Day 5 - June 20 - Hopeful Day

I just hung up with Eric... he summarized by saying it was a hopeful day.

Connor's spine is slowly moving back in the direction the doctors want it to be. Which means that the paralytic drugs are doing their magic. They've taken a couple more X-rays, but Eric hadn't seen them yet.

Eric did say that after the nurses left he talked to Connor (in his drug-induced, paralized, near comatose state). Eric said "if you hear me, move your eyebrows." Connor moved his eyebrows. So Eric continued to talk and sing to him.

A couple of people visiting told Eric that when they held Connor's hand his hand twitched in theirs.

Then Joelle and a friend were sitting in Connor's room and Joelle was rubbing his feet (which sounds like the job every big sister wants!). She said to Connor, "if you can feel this, raise your eyebrows." And guess what... he raised his eyebrows.

The wrestling match between Hope & False Hope continues for certain, but overall Eric said it was a hopeful day. Pray for more days like this!

Kent

back home in Virginia