Saturday, May 31, 2008

Hana's Wedding

Dave and I were up in a beautiful meadow in the Beskydy mountains today for my friend Hana's wedding.

Hana and I met seven years ago when our girls were in ballet class together. She has walked through a lot of difficulties since then, including divorce.

Today was a special day of celebrating with her the long road she has walked these past years. Peter is a wonderful man for her and her girls - it was a joy to see them marry and to share in this day with her.

Several months ago she and Peter asked Dave to lead the ceremony - to be their spiritual covering over this day. He did it so well!

We got home just in time for him to change out of his "pastor" clothes into his "youth" clot
hes so that he could go up to Malenovice to teach this evening for the group of summer interns who just arrived! He'll be teaching the next five evenings through Wednesday. We then pack on Thursday and fly early Friday morning!

Caleb continues to improve every day. How we do praise the Lord for the progress we're seeing in him! Thanks for continuing to pray for him.

Wednesday, May 28, 2008

We're Home

It feels ever so nice to be back at home! We arrived in Prague Monday afternoon after an uneventful, though long, flight back. Dave picked us up at the airport - what a happy reunion that was! And then of course it was just as sweet of a reunion at home with Tyler and Claire.

While we were in the States, Caleb sadly missed an orthodontist appointment for getting his braces off. The doctor then got sick and was out for a month with pneumonia. When Dave called to reschedule the appointment, her nurse said there was no way she would have time to take them off before we left for the States again - she was completely on a backlog of appointments.

Dave told Caleb he could sure pray about it, but that there was a good chance he'd have to wait until the end of July to get them off.

But our compassionate Father heard Caleb's pleas and gave him an appointment...the very day after we arrived! We were in the doctor's office yesterday at 1 and Caleb is now happily without braces! What a good gift after all he's been through.

Saturday, May 24, 2008

At Last

Four AM will come awfully early Sunday morning, but for a good cause...we're flying home!!

After nearly six weeks here in the States seeking help for Caleb's severe abdominal pain, we are able to go home. feels so good to say that!

The treatment is taking effect now, though the doctor says it will be 4-6 months before the pain is completely gone. But going from an 8-9 in pain every day (on a scale of 1-10) for the past few months, to a 6-7, and even an occasional 5, is progress!

This has been a long ordeal for us, but at the same time, very special. God has met us in so many extraordinary ways, and we have deeply experienced His love and care for us. It's not one of those experiences that you would choose, but also not one that you would want to miss - we really have tried to soak in all that He's had for us during this time.

I feel both tired and refreshed after what we've been through. I told Dave that a two week vacation with the family in Hawaii about now would be good! He laughed and said, "How about a trip to the States??"

It's crazy, but we've had a five-week trip planned there for the past 9 months. So we will leave together as a family on June 6th to be in Colorado for a Patty family reunion, to Michigan for a family conference at Gull Lake where Dave is speaking, and then on to Chicago and Indiana. Who would have ever thought it would come on the heels of six weeks here for medical purposes?!

A man can plan his ways, but the Lord directs His steps...we're sure finding that to be true these days!

Monday, May 19, 2008

Happy Day at the Beach

Caleb and I went to the Oregon coast with my mom, dad and brother today...what a good day!

The Oregon coast, and especially Newport, is a place of comfort from my childhood. Eating clam chowder at Mo's, peeking in the gift shops downtown, and walking on the beach are all things that fill me up.

Today was even more meaningful since Caleb was feeling a bit better (only at a "6" in pain, rather than a "9" like he's been at) and we could all enjoy the day...that was a goo
d gift from the Lord!

Oddly enough, one of the best parts of the day though was a small, serendipitous moment...happening onto a little fire that someone had started on the beach, but had just walked away from as we arrived.

The Oregon coast is not known for its warmth so usually it's hard to stay down there for too long when it's windy, cold and misty as it often is.

But when we found the little fire and started feeding it with driftwood, suddenly it was one of the best places to be on earth!

We stayed down there for two dad even drove back into town and got marshmallows for us to roast in our fire! We definitely made the most of the opportunity!

It was such a good day...good to be with family, good to see Caleb feeling a bit better, and good to enjoy the beauty of the Oregon coast,

With all that's been going on, we needed a day like today!

Thursday, May 15, 2008

Best Place to Be

The results are now in from all the tests that Caleb has had. Whew...what a pile of tests it's been this past month. It's nice to be on the other side of those.

According to the tests, he is dealing with chronic inflammation that has caused an over-activity in the intestines. The over-activity causes further inflammation and distress to his intestines, and thus the cycle continues, resulting in severe pain such as Caleb has.

The good news is that it isn't Crohn's, Celiac, IBS, stomach migraines, dyspeptic ulcers or any of those sorts of gastro-intestinal diseaseas...and we're thankful for that. The flip side is that the doctor said it will take time to bring the intestines to health...this particular illness is not easily diagnosed or treated.

But we do have a workable plan for treatment and have begun that already. Our tickets have been extended (we were supposed to leave Tuesday the 13th) so that we ha
ve time to watch for improvement and/or further distress. Pray that it's improvement we see!

While our hearts are finally at peace that we've gotten to the bottom of Caleb's pain, we also know the road ahead is most likely not a short one...we're in this for a longer stretch. Caleb had a better day yesterday, and then some very severe pain in the night. That's the reality of life right now and we're both doing the very best we can to cope with that, and trust the Lord in the midst of it.

We are also SO anxious to go home to Dave, Tyler and Claire. It has been hard to be apart this long. Some days we just sit
and talk about the things we love at home...our family, our friends, our life there. It's always best to be in the place where God has you (for us right now that's here in the States getting help)...but we do long for our normal life at home.

Thankfully we are with my parents in Eugene for this next stretch and that's comforting.

And most of all, we are right in the center of God's good plan for us. That's the best place of all to be, no matter where that is.

*** First picture is at the entrance to Doernbecher Children's Hospital, second is on Mother's Day getting my gift from Caleb...loved it!

Sunday, May 11, 2008

More to Life

While right now much of life is about what's going on with Caleb, there really is more to life than that. Like...celebrating Mother's Day!

One of the blessings of being here right now is spending Mother's Day with my mom for the first time in at least 20 years.

We actually can't remember when the last time of the sacrifices my mom has so lovingly and unselfishly made these past 24 years that I've lived an ocean away.

I celebrated my mom by taking her for her very first pedicure today! We had so much fun getting pampered for an hour.

And if that wasn't enough, another hour together at Ross (Dress for Less!) was just what we both needed in the midst of all this difficult medical stuff with Caleb.

I love my mom and love that the Lord let me be here with her for this Mother's Day!

Saturday, May 10, 2008

Pill Cam Done

The picture gives an adequate view of how Caleb feels after three and a h
alf weeks of tests here in Oregon. Poor guy...he's pretty much used up all his reserves by now and just wants to go home. I don't blame him...I do too.

But we're not done by any means.

Yesterday he had the pill cam test. In a seven and a half hour period of time, this little camera that he swallowed took over 50,000 photos of his insides! It is a super cool technological breakthrough that was only approved for the general public in 2006. It will give the doctors a lot of data to work through in trying to figure out the cause of Caleb's pain.

It normally takes two weeks for them to get the report back to the patient, but they told us yesterday they would try and rush it. Even so, it will most likely be next Frid
ay before we get any news.

In the meantime we are back down in Eugene with my parents. Yesterday was my dad's 70th birthday so it was special to be here to celebrate that with him. Plus I haven't been with my mom on Mother's Day in at least 20 years so it will be wonderful to spend that holiday with her. I'm taking her for a pedicure today for some fun mom-daughter time together!

For Caleb, the pain continues. He had an especially painful night last night. As you can imagine, it's taking every ounce of his fiber to live and deal with this level of pain.

I know you're are we. The Lord knows exactly what's going on - none of this is a surprise to Him. So we wait on Him for His timing, His answers, His healing.

We have had to change our airline tickets as we were scheduled to leave this coming Tuesday. But since we have no answers yet we don't know when we'll make it home and that's hard on all of us. Thanks for remembering to pray for Dave, Tyler and Claire at home. They need the Lord in a special way too right now.

Thursday, May 8, 2008

Pill Cam on Friday

After literally spending the entire day today on the phone with doctors, nurses, assistants and schedulers, the appointment for the pill cam was made for this Friday morning.

By now I know that any medical appointment that you get within a few days is a miracle, and this one is no exception. Although our Pediatric GI doctor had made arrangements with the adult GI doctor to do the cam, getting through his schedulers for it was another matter. The first date they gave to me was June 1st!

But after persistence all day, they arranged it for this Friday. We'll be at OHSU again at 8:15, with him swallowing the capsule at 8:30. At 4:30 we'll return to have them take off the transmitter and sensors. The adult GI doctor will review the transmitted information on Monday or Tuesday, and we'll see our Pediatric GI doctor on Wednesday for the results.

My dad's 70th birthday is Friday so we'll head down to Eugene after Caleb gets unhooked. We'll plan to be there until we return for the follow up appointment on Wednesday.

Thanks for praying us through this! Literally, I believe the Lord has heard our cries and answered today through your persistent prayers. This is a significant step forward in finding what's wrong inside of Caleb's intestines.

Wednesday, May 7, 2008

With Caleb

I am in the recovery area with Caleb right now, watching him sleep. Thank you so much for praying for him, and for me, today - that has been so comforting. I want to give a quick update to you while he's still sleeping.

The endoscopy went fine - a few irregularities but nothing to account for the pain, though the doctor biopsied in two places.

However, in the colonoscopy there were two more areas of interest. He took additional biopsies in both areas and will try to rush the results back from pathology by Friday.

The plan is to continue on with the pill cam as soon as it can be arranged. There is an area of his intestines that was not visible by either of the procedures done today. They want to make sure that absolutely every area has been seen.

Caleb will sleep off the anesthesia and then we'll head back to where we're staying, returning later on this week for the pill cam we hope.

My mom, dad and brother were here with us this morning, but it's just Caleb and I this afternoon. It's actually peaceful and quiet here right now. Just me, Caleb, the nursing staff and the Lord!

Thank you so much for your outpouring of e-mails and prayers for us. It means more than you can ever know.

PS. Back at home tonight...still high pain. Oh Lord, come near to Caleb as he continues to suffer.

Monday, May 5, 2008

Hospital Tomorrow

At 8 AM Tuesday morning Caleb goes in to Doernbecher Children's hospital where he will have an endoscopy and colonoscopy. They'll do the tests under anesthesia so he's actually being admitted to the hospital for the procedures.

They'll be looking extensively to find what it is that is causing this excruciating pain.

If they still can't identify the cause, they will go on to the capsule endoscopy, a fairly new and innovative procedure where he swallows a camera and it takes many, many pictures as it makes its way through his body.

These past few days have been terribly painful. Since we don't know what's wrong, we don't know why the pain is intensifying. There are additional symptoms that are appearing as well, making life pretty difficult for him.

Last night he told me he doesn't know how much longer he can endure this - it is wearing on him not only physically, but mentally and emotionally.

So do pray for this procedure tomorrow - that the Lord will see fit to fully bring into light what is the cause for Caleb's pain.

We rest in knowing that the Lord is near to us, that we are being tenderly cared for, and that the presence of pain does NOT mean the absence of the Lord's love. In fact, we know His love more deeply right now than we ever have.

Saturday, May 3, 2008

Never a Dull Moment

If you've been following Caleb's journey of pain you know that there have been many stops and starts along the way. Well...let me add another one today.

Last week when we met with the doctor at the hospital in Portland, he essentially told us that Caleb's pain is a malfunction of neurons from his stomach to his brain. In essence...the stomach is sending the wrong/too strong of a signal to the brain. He said he could find no organic or functional cause to Caleb's pain, and thus concluded that we needed to medicate him for pain and cramping and teach him how to live with it indefinitely.

I probably don't need to tell you what discouraging news that was. After this doctor had promised to get to the root of the problem, it felt like he aborted the process too quickly, not having completed the tests he had recommended when we first met with him three days earier.

So for the past week we have been wholeheartedly petitioning the Lord on Caleb's behalf, while at the same time, seeking out additional help for him. But every door seemed to be closed until Thursday when we had the appointment with the doctor my mom's friend had recommended.

He was heading in a more holistic, whole body solution which felt to us like a reasonable approach. We felt God had heard our cries and answered them, though were still unsettled that these other tests had not been completed. But you that point when the door seems closed, you trust God as best as you can, and move on with what seems to be the next step.

With that in mind, yesterday Caleb and I drove down to my mom and dad's house for some R & R while we waited for our next appointment with the doctor we saw on Thursday. It felt good to be here last night getting love and care from them. Caleb had a good night's sleep and said he felt refreshed this morning.

But as the afternoon began, the pain intensified significantly. My brother decided to go with him to a movie to take his mind off things, while my mom, dad and I went to the mall.

Standing in a department store an hour later, my phone rang. I hesitated before answering it since I didn't recognize the number, but then answered.

"Hi Connie, this is Dr. B..."

"Whoa, whoa, whoa...wait a minute", I thought to myself. This is the doctor who essentially dismissed us last Friday. What is he doing calling me???

"I haven't been able to get Caleb off my mind - How is he? Has there been any change? No? Well, I feel like we didn't get to the bottom of what was going on for him. I know I said the test we did was accurate but I can't stop thinking about him and feel like we need to proceed with the rest of the tests...colonoscopy, endoscopy, and even the capsule endoscopy. Can you be here on Tuesday morning and we'll admit him to the hospital for these tests????"

Wow. My head was literally spinning as I listened to him. I was so shocked I could barely speak, not to mention the weakness in my knees. When does a doctor do this??? Caleb and I truly felt dismissed by him last week and couldn't understand the change of attitude we experienced from one appointment to the next. And now he's had a change of heart? This could only be explained by God.

We have persevered in faith and trust in the Lord for the week since our last appointment with this doctor, trying to think the best of him, but really confused as to what had happened.

Ah, but the journey is not so straight forward as we would like. It takes twists and turns for reasons that are often unknown to us at the time. Except for one morning of wavering in faith and hope, I can honestly say that in spite of these twists and turns, I have believed the Lord for his healing in Caleb. I still don't know how or when that will come...but I believe it will.

And now here we are...headed back into the hospital on Tuesday for another big round of tests.

Will you please join us in praying that the GOD WHO SEES ALL will reveal and make known the source of this pain for Caleb? It is at its worst tonight - he is laying on the bed beside me as I type (don't want to leave him alone in it) wincing and gritting his teeth as the pain sweeps through him. That is just hard to watch and not be able to do anything about.

But there is a God and He loves and cares for Caleb so much that He would change a doctor's mind about seeing him! So we head into this Tuesday with love, trust, and thankfulness in our hearts...and expectancy for what the next leg of this journey will hold.

Friday, May 2, 2008

Hope Today

Just when we thought we were at a dead-end, the Lord surprised us.

Last night my mom called with some news. Earlier in the day she'd had a conversation with a friend who asked about Caleb. When she heard that there had been no diagnosis, and that the pain was still severe, she said, "Let me make a phone call for you."

Fast forward seven mom called me at 10 PM to say she had just called back and we had an appointment with another doctor at 11 AM...the very next morning!

This came on the heels of a discouraging morning yesterday. The second doctor who was looking at Caleb's case was willing to give a second opinion but...did not have space to see him until June 16th. And that was after the office manager combed his books looking for one little space to sneak him in. At that point we knew this was not the place for Caleb. That left us discouraged and asking the Lord for what was next.

And then...God moved in the heart of this new doctor, who took a call on his personal number at night from my mom's friend, and had space to see us the very next day! Remarkable, really.

This doctor has some ideas about what's going on so is pursuing treatment with him. We pray this will be effective for Caleb.

Most of all we were encouraged by his hopeful, engaged, kind heart today. When we left Caleb said, "I like this guy! He makes me think I don't have to live in pain forever!"

Caleb and I have had many talks these past two weeks about how the Lord sometimes brings physical suffering into our lives. We both acknowledged the value and good that it can produce, and neither of us want to push away what He's doing through this in our lives. But there sure does come a point where it is draining and you wish it could be over.

We don't know if we're nearing the end, or if there is more to come. But at least we have some hope today. We're thankful for that.

PS. Caleb and I get stir crazy sometimes so go hang out at Starbucks or Panera or the pet store, even though he doesn't feel good...the pic is he and I at Starbucks this week. We drove south two hours today to be with my parents for a few days. It's nice to be here with them.