So Elijah landed in the hospital - again. Things had been going pretty good for the little guy throughout the summer. His bowel regimen, despite a few hiccups along the way seemed to be going well. He was finally (mostly) able to make it into the restroom and stay clean and dry all day. It was big deal when he turned five and also felt like a big boy. However, in early October, we started noticing less and less success. We took him to the gastroenterologist, who wrote it off and said we were just waiting until he was older and would better tolerate a surgery or further testing. But things continued to decline and while we were travelling in Michigan to visit family, it became clear that he was obstructed. We tried the normal cleanout (which isn't for sissies) and nothing happened. We waited until we got home and kept trying. Finally, the dr. decided that we should admit him for a clean out. Typically this isn't a fun experience, but it's quick, like less than 24 hours and a gallon of laxatives. Elijah took five days and ten gallons.

Obviously, things had gone significantly wrong. A new Dr. was assigned to us, and we really liked her. She thought it would be good to rule out a couple of things, and scheduled a colonoscopy and several biopsies. We didn't really expect them to show much, but were necessary to rule out a few other conditions that would have required a different approach.

When he was almost one, he had a surgery to cut his spinal cord, it was necessary, but left residual damage. This was one of the functions that was damaged. They've now decided Elijah's colon is paralyzed. Therefore, it simply doesn't move the food through. Bloodwork also shows that his body isn't doing a good job of absorbing nutrients from the food he eats. So, we were put in touch with surgery. By God's provision, the surgeon we were assigned had recently moved here from Cincinatti Colerectal Center for Children, and had experience with kids similar to Elijah. He will be performing a MACE procedure, which is basically a stoma (hole) that connects his bowel to the outside of his abdomen to allow him to flush his system each day with a cleanout solution. This should then allow him to be clean the rest of the day.

Yeah, it isn't ideal, but it's better than anything else available.

The biggest setback has been Elijah's behavior and attitude. He is really angry. He understands to a degree what will happen in the coming weeks. He is embarrassed about the constant accidents between now and then, even though he knows he can't help it. He hits me sometimes for no reason, other than he knows he's angry. He told his brother that he wished God would break his bowels too (This happened when he was having bladder trouble too.) I think it means he feels like he's being picked on. There is only one other child in the area that the surgeon knows of that has had a MACE procedure. So we are kind of lost as to how to help a five year old, who doesn't reason very well be okay with everything going on.

PRay for our whole family. Patience is needed. Sleep is needed. Faith is needed. We feel blessed in many ways this year, but it is still a big, big strain on the family. January will be hard. We know God is in this, and are thankful for the big and little ways, He has been seen - providing a surgeon locally; a youth pastor who is willing to talk with Elijah; giving us peace and rest; providing a telephone that rings with new customers, although I have no time to go drum up business, all of our guys are very busy. There's more I haven't counted. Thanks for praying, thanks for encouraging us when you see us.

Our Miracle is Five!

Elijah (our third) is turning five today! Four years ago today, Elijah weighed 10 lbs on his one year birthday. In fact he was two ounces shy, but the nurse fudged it so he could have surgery. Four years ago today, we didn't know if Elijah would walk, talk, or even make it to today. Four years ago today, we were very scared, but afraid to say how scared we were, because we didn't want to admit that it was bad. We were even afraid to pray. The elders at our church asked if they could pray over him, we told them it wasn't that bad; we let them do it anyway (and I'm glad we did!) My parents called everyday, most days I told them only the good things, so I wouldn't have to remember anything bad.

They cut his spinal cord in surgery that day, because it was tied in a knot around his spine. They weren't sure how much it would help, if at all, but God knew. We were in the one city, at the one hospital, with the one surgeon, who knew exactly what was happening and how to fix it. And she did because God placed us there so that He could be glorified!

Three long hours after they took him back, the surgeon came to tell us that all had gone well. And that Elijah should lay on his back as much as possible for the next five days, and we would stay with him at the children's hospital while he rested for several days. Two hours after getting out of surgery, he stood up and threw himself over the railing of his crib, landed on the IV stand and needed steri-strips above his eye. We were so excited! He used his legs, and his arms! He did great for two weeks.

But then we had setback after setback, as he would improve in the hospital and as soon as we went home, he'd regress. His immune system was shot and he had an infection that went undetected for nine months, resulting in nine months of in and out hospitalizations. And Elijah was sleeping for 22 hours each day. He was a different child than before the surgery, than before he'd been sick. Eventually, they figured out the right combination of antibiotics and he slowly got stronger.

Then we realized that his bladder and bowels were not functioning properly. He had in a catheter for several months starting just last summer, but God once again provided the right doctor just at the right time. One hour before he would have had a colostomy, the surgeon made a phone call and we walked across the hospital to a gastro doctor that we'd called before and were told he didn't have any opening until July (it was April). And the surgery we thought was inevitable and was the opposite of what we wanted was cancelled. A long weekend and many months later and it is today.

Elijah is turning five today! He is a wealthy weight and height and in the 50th percentile for his age! He can walk, run, jump and play like every other child his age. He can talk, and play games, and tell jokes. He can stay awake for an entire day and fall asleep exhausted at night from all the fun he's had. He has been using the potty successfully for four whole months and never has accidents and doesn't have any extra bags or tubes to make it happen!

So more than usual, we have a lot to celebrate today. And a lot to praise God for! So, today, as I watch Elijah swim in the pool, run across the not so freshly mowed yard, and hear him shout with excitement over his cake and presents, I will be praising God for every moment that He has given us to enjoy our n0t-so-little-anymore Miracle!

Witness to Tragedy

Yesterday, the warmest Saturday that the area has seen all summer and the first Saturday in several weeks that my husband hasn't had to work, our entire family was loaded in the truck and headed up the gorge to put the boat in the water. Suddenly, we became witness to a tragic accident. We were several cars behind the accident, so didn't see everything clearly. But what was clear is that a man, partying with his friends had fallen out of a moving convertible. By the time Scott and I pulled over and ran to help (we were both trained EMT's and firefighters), it was obvious that the man wasn't going to make it. Despite this fact, we attempted chest compressions, not quite willing to concede hope.

But it's really what we saw next that shocked everyone the most and has bothered me since. The driver of the vehicle he was in, and one other passenger, turned the car around, came back and looked at their "friend" and then drove off back towards town. I understand they likely panicked and didn't know how to respond. They had likely been drinking and were scared. But it still seems especially callous, and even more so that it is the next morning and they haven't come forward even to give a name to the victim.

I'm not sure why this has stuck with me for so long, I mean while working with the fire department, I saw my share of trauma and it didn't really bother me. I think the best way I can put it is that it somehow it bothers me and makes me wonder, would my friends do the same to me or would I do the same to them. Obviously I don't expect to find myself either driving or being the person standing while driving at excessive speeds on a highway, but in life, we often see someone fall in other ways. And I'm certain there have been times that my fear of getting involved in the mess or just not caring enough has caused me to leave my friends on the side of the road when they needed help. I can remember one conversation with a friend that I'd grown up with who was visiting from across the country; she was telling me that she was considering a divorce and although I talked her through it that night and discouraged her, I never followed up. She was across the country and I didn't have time to take care of the problems she was facing and become involved. I've now lost contact with her and always regret the way I handled it.

Sticking around someone that's been hurt or had a bad fall is hard. You have to say difficult things, you can't be in a cozy spot pretending all is right, you have to get caught up in the messiness of someone else's life. And it isn't usually the choice that going to gain you popularity points either. I find it a lot easier to stand at a distance and gossip with others about how I would never be caught in that situation or what I would have done differently. Maybe this is a challenge to me to stop and look around, to be willing to be there when someone falls, to be willing to stop what I'm busy with and put others first.

And it's also a picture of what Christ did for us - we were all fallen, unable to get up and unable to do anything for ourselves and Christ was willing to die for us, to give us his name, his identity, so that we may have real life.

.

Osama bin Laden and Death

Last night at home group, we listened to Piper teach about living and dying to the glory of God. Then immediately after returning home, I learned of Osama bin Laden's death. My gut reaction was one of happiness and joy, maybe even celebration--probably similar to what most Americans felt. I almost broke out in spontaneous song: "Ding, Dong, the Wicked Witch is Dead..." But resisted.

However upon greater reflection, it occured to me that God was probably not rejoicing. In fact, we are told exactly how God feels about "the death of the wicked":

"As I live, declares the Lord God, I have no pleasure in the death of the wicked, but that the wicked turn from his way and live." Ezekiel 33:11

Of course, this is consistent with who God is. We all feel that Osama bin Laden got what was coming to him, he deserved to die; he did, after all, plan and fund the deaths of thousands of Americans. He did instigate a war that has cost this country billions in dollars and hundreds of lives. If he didn't deserve to die, who does? Osama died and went to hell (Yes, Rob Bell, he went to hell.) where he will suffer for eternity. And he deserved it. But so do I. So do you.

And the fact that bin Laden's life was one spent promoting evil, does not make him any more deserving of hell than you or I. And just like God loves me, he loves Osama bin Laden. And God isn't rejoicing that Osama is in hell. He would rather he had turned from evil and LIVE. Indeed, that sinners go to hell is truth, but it is also tragic.

You see, when a believer dies, we can say like Paul "to die is gain." But the death of an evil person is not gain, it is only a warning of what would be our fate, the fate of every person that ever lived, good or bad, if it weren't for the grace of God.

But those of us who are living, we have been called to a single purpose - to live for the glory of God. And one day, to die in such a way that will be gain.

However, on the flip side, I do believe that in a way, the death of someone like bin Laden is also a victory. God promises victories over His enemies. And it is only through punishment and death that there is victory. It is glorifying to God when there is victory over evil. And ultimately it is a picture of the judgement day to come. That day when we will all be judged. And our Creator will either see Christ in us or will not. If Christ is not in us, our eternal fate and judgement will be the same as this man who left Americans cheering in the street at his death.

6 Weeks Makes a Life Changing Difference

I hadn't posted anything lately about Elijah and thought an update was long overdue. Apparently I am as guilty as most about being quick to let people know when things are going well and ask for prayer, but I've been slow to give praise for the immense good that has happened. Elijah has had a complete turn around and now has been able to use the toilet normally for six weeks -- without surgery! The prognosis is great - although there is a small section of his bowel that does not function, however with minor daily laxatives, he is able to keep things moving. He still has painful bladder spasms 3-5x each week, and has a few other minor hiccups. But overall, we are thankful to report, that he is a healthy, happy, normal, almost-five-year-old! So thank you for praying with us through this and thank you for asking (many of you did) how he was. Now join us in praise for the incredible turn around that we were told wasn't possible!

No Surgery, for now...

For now, surgery has been delayed indefinitely. We met with the surgeon today, who has decided that he wants to have more information about the root cause of Elijah's bowel issues before moving forward. Basically, not enough tests have been done. Also, Elijah's bowels are still completely full. I didn't fully understand how, after changing many, many diapers every day that this could be even remotely possible, but the scans don't lie. Apparently, there is blockage and the miralax is just pushing stuff around the blockage. Our orders for the weekend are twice a day ADULT sized enemas and twice a day ADULT dose of miralax.

So, on Monday, they will repeat the scan, if he is still full, then they will admit him for a bowel cleanout. Yeah, that doesn't sound fun. Then they will do an enema contrast to see the shape of his bowels. Finally, they will do a bowel biopsy to determine which part of the nerves are dead - and which are not. If there is enough functioning bowel, they may be able to do a "pull-through" procedure that will allow him to function fairly normally, but with a section of the bowel removed and the good stuff all connected together. This is only a possibility.

Another possibility is that by cleaning his system out - allowing him a clean start, it would allow his body to "learn" how to control his bowels. They aren't holding out a lot of hope for this, but think we should try.

Finally, we could still end up with a colostomy. Again, not what we want, but one way or another, we think that we have a good team of doctors that is committed to quickly running more tests and assuring us that it is the right move, right now.

I feel exhausted from the quick change of plans, but happy to have more answers before moving forward. I hate giving the enimas - it is torture for Elijah and the first one didn't produce a lot of results.

Pray that we'll get through the weekend first and have more answers on Monday. We go in for a scan first thing and then see the doctor again at 11.

Decision Made

We will not be taking Elijah to Cincinnati. After further discussion with the intake nurses there, it appeared as if their treatment is not what we feel would be best for Elijah. It was very clear after reading more on their website and the conversation this morning with the nurse, what our decision would be. We are very thankful for this clarity. The treatment they were recommending would include a daily routine that would really restrict Elijah *every*single*day*for*the*rest*of*his*life! They doubted how much success we would have based on his age and said that he would likely end up with a colostomy anyway. Furthermore, many children who have success with the program, feel so tied down by it, that they opt for a colostomy in their teenage years.

So it obviously isn't the breakthrough we thought it might be. However, some good news did come in today. The gastroenterologist, who had previously only reviewed Elijah's chart, but didn't have any openings to see him, has had a cancellation for tomorrow and Elijah got the appointment. I will feel much better having spoken to him in person and having the opportunity to ask a lot of questions. Also, Elijah is at Roxanne's today and at noon she said he had gone potty on the toilet, twice in the morning. This has never happened at home, so it gives me hope that he might have some urinary control, but loses it only as his bowels back up. Or maybe enough control to go on a timed voiding schedule?? What this means is that with a colostomy, he may not need catheters in any form?! Only time will tell, (and honestly, we'll know next week) but wouldn't that be wonderful? So tonight, we will rest much better, knowing that the Lord is guiding us on this journey. Day by Day!

Making Big Decisions Fast

So last week, the urologist, gastroenterologist and pediatrician all agreed to move forward with colostomy and placement of a supra pubic catheter. We've been giving Elijah a Miralax treatment to try and clean him out. Although its been working to the tune of many diapers a day, it hasn't been working to the end of cleaning him out. The x-ray today still showed a good amount of stool left. They also removed the catheter for a few days, because his urethra was irritated so they wanted to give it a rest.

Yesterday, the surgeon worked with Elijah's doctor and moved his schedule around to make an opening to see Elijah next Friday, the 11th, for a consult and if there was time, he might do the surgery then... (BIG IF, since the doctor is on call that day.)

Then, today, we saw the urologist again, and he had gotten information and is recommending that we stop moving forward with the colostomy and instead take him to Cincinnati Children's Hospital Colorectal Center which has treated a patient very similar to Elijah with success. This of course would be a big step and a big deal for Elijah, for our family life during his treatment, which could take a long time.

So now, we just don't know what to do... Pray for wisdom for us, and the doctors. Pray for Elijah to be comfortable and to empty his bowels.

Not Sleeping

It's been a busy day and I can't sleep. Scott's mom had come to surprise us for a visit a few weeks ago on Micah's 6th birthday, stayed through Gideon's first birthday and just traveled home today. It was good to see her and we really appreciated all the help she gave us around the house and with the kids, but are ready to get back to our own routines too.

However, last night I woke up several times thinking of a new question for the doctors. I just can't help but feel for E and what he will go through over the next few months - even if ultimately it's for his own good - it's hard to reason that with a four year old. Now tonight I'm laying awake again thinking of the same things.

Pray for all of us. It's sure to be a stressful time. And pray for Elijah that he will stop hurting. We've started the bowel cleanout regimen and it's working, but he is still in pain - albeit less often. He tends to revert to babytalk and behavior when he is hurting, and we have to draw a hard line to not allow this.

A plan...

Today, Elijah saw Dr. O. For now the catheter stays put. Next week on Wednesday, we'll run a few tests and xrays and then schedule for a super-pubic catheter to be placed. We are also meeting with the gastroenterologist to talk about a colostomy. Not fun. Not fun. Not fun.

Yes, It's been a while...

A friend of mine reminded me how long it's been since I wrote anything here, simply by sharing her new blog. So I thought I'd pop back over and give everyone an update - it seemed like a good time to do so anyway.

So ...since September, not too much has happened. Elijah was able to remove the foley catheter and begin the road to daily self cath. He didn't get far before a nasty insurance hiccup brought everything to a screeching halt. So we made do. At four, he is still in diapers and we thought a good first step to independence would be to learn to change his own diaper, wet or icky. He learned this new trick in no time flat! I think it really helps him feel like a "big boy".

However, just this past week and half, he seemed to have problems again. First, he had a nasty bladder spasm, that caused quite a scene and sent Daddy up the play structure at Chuck E. Cheese to retrieve him. Then the next night, he said his belly hurt and he threw up a few times. Not sure if it was bladder related, but seems like it might have been. After a week of toughing it out, with long dry spells between wet diapers, some barely wet, we took him to the ER at the advice of the pediatrician.

There was blood and thick icky urine when they cathed him and an infection. So now he has the foley catheter back in and we are meeting with Dr. O again on Monday to continue the path toward either daily self cath or perhaps a super pubic catheter and a colostomy. This has been recommended in the past, but I've been reticent, holding out hope that he would figure it out and get better. But as time passes, that seems less likely and getting him used to something more permanent is the goal.

Please continue to pray for us as we make decisions for Elijah and for him as he learns to cope with so much change and pain.