2T (Target & TJMaxx, that is!)

True to the 'sick-cycle', Schaeffer is feeling better today. I wonder if this is a good or bad thing considering our appointment is just two days away?

There are moments when Schaeffer carries a resemblance that is so strikingly similar to myself (Kate), that it takes my breath away. We've been home for days-and Schaeffer woke up asking to go out. Out for breakfast, out to the grocery store, out shopping, out out out.

We had a great breakfast with friends & headed to the shopping mecca of our area-Target & TJMaxx. Schaeffer loves Target, she loves the 'little kitchen', which is otherwise known as the food court--loves getting popcorn & a coke. She loves browsing & finding little treasures just as much as I do. It is always an adventure-and great fun.

What an encouragement to see SJ eating, even if in small quantities. We'll continue to do the next right thing, and rejoice in every little piece of normalcy.

One giant step for the Ott house!

Schaeffer has clothes on, real clothes on! Schaeffer has clothes on before noon!

Funny, how the smallest things become landmarks. Today, a sweet girlfriend dropped off a chai before heading to Bible Study Fellowship. Before I knew it, Schaeffer girl a had grabbed the chai & was sucking it down. Another small thing, but encouraging. It is so good to see her 'eating' anything with calories--I'll settle for cookies, doughnuts or even chai.

Most of the disgusting bodily functions have ceased-she'll still have the occasional diarrhea, but it has transitioned from 'growler' stage (where all garments are instantly covered) to a much more manageable state.

Her energy seems to be picking up, but I also know that we've basically been home and done nothing since Saturday. So, we need to continue to be very judicious with our exertion level & the choices we make for activity.

I've (Kate) been thinking a lot about our appointment on Friday. I know that we are putting much stock in this one hour, brief visit with a new doctor. I want to be careful to not put so much expectation on this one event & hoping for a diagnosis, that when it doesn't happen (the way I want it to), it doesn't leave us devastated.

So, I'm praying in a new way today. Would it still be MY choice for Schaeffer to receive a diagnosis & treatment plan-yes. But, it may not be God's plan--and that has to be OK with me. Would I choose to schlep to every prestigious hospital in the U.S. until we get an answer for my beloved--Yes. But, this may not be what God has for us.

So, again we wait. But knowing that I'm waiting on the God of the universe-the God who gives Schaeffer life & breath-the God who loves me so much he sacrificed his own Son... I can wait.

"We pray that you'll have the strength to stick it out over the long haul-not the grim strength of gritting your teeth but the glory-strength that God gives. It is strength that endures the unendurable and spills over into joy." Col 1:11 MSG

ANA: Negative!

Without either of the pediatricians who are caring for Schaeffer in the office today, there is little new information from her testing that was done Saturday.

The one blood test from the batch that didn't need a physician interpretation, was the ANA which was NEGATIVE! (The ANA is a blood test that is used in the evaluation of lupus or other connective tissue disorders. It measures the presence of abnormal antibodies. When the ANA is positive, it indicates that someone may have an autoimmune disorder, but alone it can't make the diagnosis. If the ANA is negative, it is very likely that you don't have lupus.

The ANA profile is a series of tests consisting of an ANA and other related abnormal antibodies. This may be done if the ANA is found to be positive or possibly at the same time as the ANA. This profile helps look for diseases such asSjögren's syndrome, lupus, drug-induced lupus, polymyostitis, and scleroderma.)

We feel encouraged to have a definite answer--even if it leaves more questions. Join us in singing songs of praise!

"Are you hurting? Pray. Do you feel great? Sing. Are you sick? Call the church leaders together to pray and anoint you with oil in the name of the Master. Believing-prayer will heal you, and Jesus will put you on your feet" James 5:13-14MSG

It's Mickey Mouse Club House!

We've had to make some difficult decisions on the road to health-one of the most difficult has been the sacrificing of my (Kate) commitment to Bible Study Fellowship. Mondays & Tuesdays are the highpoint in our week-filled with great spiritual food and encouragement. Knowing that 16 women depend on me is enough motivation--and yet I also know that 5 hours with other children would be far too much on Schaeffer's sensitive body. So, something has to give and it can't be my gal.

So we're home today, and as you see from the picture above, not much activity is happening. We haven't gotten any further results from the blood work on Saturday, but are expecting them sometime today. SJ still isn't eating, but has tried PediaSure, and is still drinking juice and water.

We're continuing to pray--and rest. For now, that's all we can do.

"You need to ask God What He wants you to learn today."

I think there are times when life gets a little too hard for the heart to bear and survival sets in, causing a strange kind of disconnect from the brain to the heart.

Today's sermon (what we heard of it, above managing Schaeffer's needs and the drone of her Dora dvd) was a great reminder that, while we must continue to stay on top of all of SJ's health needs, we must not loose sight of the forest thru the trees. We must continue to seek the revelation of God's character in the midst of our trial. We must continue to choose to see our blessings, our growth & our answered prayer.

It has been all too easy to become consumed with this stage, and I can tell you that I (Kate), am getting quite tired of staring at the same 'tree'. Today has brought all of the same as yesterday, diarrhea and a low-grade fever; more lethargy & moodiness that is so not typical of my sweetly dispositioned JoJo.

We are continuing to pray for Dr. Karen Dahl, the pediatric infectious disease specialist, who will be seeing Schaeffer on Friday. We're praying that God will give her wisdom & patience, and that our appointment will yield a clear diagnosis & a defined treatment plan.

I'm a sympathedic puker.

After much debate, we decided to go as a family (as in all of us) to Scott's birthday party. I knew that SJ probably should stay home and rest--but also knew that it would be good for us, and our family, to have all 3 of us in one place at one time.

The party was nice, it is so good to have momentary escapes from our current reality. It seems that the more we sit home, the more we concentrate on the next fever, the next puke, the next blood draw, the next doctor appointment.

For me (Kate), it has provided a shocking realization of how parents of chronically ill children live. The lack of normalcy, quality of life, time for themselves.

On the way home, SJ was asking for pancakes, which shocked Griffin and me. She essentially hasn't eaten in 3 days. The first batch of pancakes had just hit the pan when we heard 'the cough'.

Sure enough, Griffin and Schaeffer were covered in vomit. Vomit and chunks of doughnut and french fries. Repulsive. So now, as SJ's fever continues to rise-as is the cycle-vomit, then fever, we wait.

We wait & praise Him in the midst of this storm. Even as things look bleak-he provides glimpses of Himself, promises to be faithful. The glimmer God gave us today--which sounds minimal, but for now, to which we'll cling: a decrease in sed. rate. (for information anout sed. rate, see a few posts ago).

"I was sure by now, God You would have reached down, And wiped our tears away. Stepped in and saved the day. But once again, I say "Amen", and it's still raining.

As the thunder rolls, I barely hear Your whisper through the rain. "I'm with you". And as Your mercy falls, I raise my hands and praise the God who gives. And takes away.

And I'll praise You in this storm. And I will lift my hands. For You are who You are. No matter where I am. And every tear I've cried, You hold in Your hand. You never left my side. And though my heart is torn, I will praise You in this storm."

Oh Man!

Griffin & I were feeling so encouraged. The mysterious fever and all other symptoms seemed to have vanished-and we had our delightful, charming 2 year old back. We've had two weeks (nearly) dr. appointment free, and some sense of normalcy was returning.

The fact that SJ wasn't eating was raising alarm bells, but I did my best to put it out of my mind. I wanted to have & keep our life back--for her--for me.

Yesterday, Thursday, I knew something was wrong. After spending the majority of the day at Mee-Maw Debbie's house, Schaeffer Jo hadn't consumed her normal (pound) snacks, and was exhausted from all the playing. Falling quickly asleep in the car, she was warm to the touch.

The evening progressed, with Schaeffer still eating nothing & me becoming more and more suspicious. Finally I had my sure-thing answer at 10:30pm when bedlam erupted.

Griff & I found SJ covered in vomit, red-cheeked and feverish, and totally distraught. The vomiting and dry-heaving continued thru the night, finally ceasing just before 5am.

Thankfully, Schaeffer hasn't vomited again today--but the fever persists. We are continuing to repeat the 'sick-cycle' that can't seem to lend any answers.

We're once again headed to the walk-in clinic tomorrow morning, but will be seeing a different doctor as our pediatrician is unavailable. Please pray for a revelation, a diagnosis & a treatment plan. Please also pray for stamina for Griffin and me, we are getting tired.

Alarm Bells are ringing!

This has been a grueling week. When I take pause to remember Schaeffer's infancy, it seems as though we've gone soft. It would be commonplace to juggle multiple appointments, feedings and spit up--all on a mere 2 hours of sleep.

To do this now, seems-well, inconceivable. We've been struggling to 'share' night duty & resemble humans in the daytime hours. How spoiled we've gotten. How complacent & lazy.

Perhaps it was time for a shake-up, a wake-up call. Will we now learn so that the next time it won't have to come at the high cost of the health of our beloved?

"So, what a blessing when God steps in and corrects you! Mind you, don't despise the discipline of Almighty God! True, he wounds, but he also dresses the wound; the same hand that hurts you, heals you.From one disaster after another he delivers you; no matter what the calamity, the evil can't touch you" Job 5:17-19MSG

"It's a great day, for a worm"

We woke this morning to weather that was mirroring my emotional state. Overcast-the sky looked as though at any moment it could open and unleash a torrential rain. I too, was feeling that at any moment, all the emotion that has been bubbling just under the surface all week could erupt.

We know that many people have been, and will continue to lift Schaeffer Jo to the Lord in prayer, and for that, we are so grateful. We have been so reminded that while the last few days have been filled with uncertainty, we have much to be thankful for, and cannot help but sing the praises of our Heavenly Father, who lavishes us abundantly.

Schaeffer's ultrasound this morning came and went without incident. She was very cooperative, considering we yanked her out of bed, and wouldn't give her anything to eat or drink on our way to the appointment.

So, now we wait again. While we wait, I'm hoping to establish a sense of normalcy, to get doughnuts in the morning, make target runs with popcorn, enjoy uncle ron's with friends. But most of all, soak in all the little delicious moments of life, that we take so for granted.

1st Thess. 1:4-6 "We continually remember before our God and Father your work produced by faith, your labor prompted by love, and your endurance inspired by hope in our Lord Jesus Christ. For we know, brothers loved by God, that he has chosen you, because our gospel came to you not simply with words, but also with power, with the Holy Spirit and with deep conviction. You know how we lived among you for your sake. You became imitators of us and of the Lord; in spite of severe suffering, you welcomed the message with the joy given by the Holy Spirit."

Great news!

It seems that just as I update the blog, I get new news that requires another update.

Schaeffer's doctor just called, the results from her X-Rays are in. (Yes, that was VERY quick!) Everything looks NORMAL. Thank you for your prayers, what a great God we have. We'll continue to do the next right thing, and see where God leads.

1 Chronicles 16:8-10 "Give thanks to the LORD, call on his name; make known among the nations what he has done. Sing to him, sing praise to him; tell of all his wonderful acts. Glory in his holy name; let the hearts of those who seek the LORD rejoice."

One down, one to go.

Have you ever just known people were praying? That is how it felt this morning, throughout SJ's testing.

Upon our arrival at the testing center this morning, we discovered that there had been a miscommunication regarding fasting & her ultrasound (of the abdomen), but we were able to complete the necessary X-Rays.

Our prayers for a quick wait & Schaeffer's calm during testing were answered in abundance. While tears were shed, each X-Ray was captured on the first try, and all testing was complete in under 30 mins.

We've been promised a quick turn around of results--we may even hear something yet today. Schaeffer's ultrasound is first thing tomorrow morning, we have to be @ the outpatient center no later than 7am.

Keep praying!

Today is Tuesday.

Schaeffer woke in the night to the loud thunder & hail storm and crawled her way into Griffin and my bed. It's amazing how quickly SJ will fall right back to sleep, and upwards of an hour later, G & I will still be awake, trying to get comfortable.

I just got a call from JoJo's doctor office, and we are free to go for her X-Rays and Ultrasound anytime today. We're going to get dressed, have a special breakfast out & head over to the Hollywood Rd facility.

Please pray that we will not have to wait very long before each test & that Schaeffer will remain calm during the testing.

As we've been praying about Schaeffer's care and our next steps, I've also been praying for God to give us a clear promise to hang on to--and this is what He's given me this morning:

Matthew 6:26-34 MSG

"If you decide for God, living a life of God-worship, it follows that you don't fuss about what's on the table at mealtimes or whether the clothes in your closet are in fashion. There is far more to your life than the food you put in your stomach, more to your outer appearance than the clothes you hang on your body. Look at the birds, free and unfettered, not tied down to a job description, careless in the care of God. And you count far more to him than birds.

"Has anyone by fussing in front of the mirror ever gotten taller by so much as an inch? All this time and money wasted on fashion—do you think it makes that much difference? Instead of looking at the fashions, walk out into the fields and look at the wildflowers. They never primp or shop, but have you ever seen color and design quite like it? The ten best-dressed men and women in the country look shabby alongside them.

"If God gives such attention to the appearance of wildflowers—most of which are never even seen—don't you think he'll attend to you, take pride in you, do his best for you? What I'm trying to do here is to get you to relax, to not be so preoccupied with getting, so you can respond to God's giving. People who don't know God and the way he works fuss over these things, but you know both God and how he works. Steep your life in God-reality, God-initiative, God-provisions. Don't worry about missing out. You'll find all your everyday human concerns will be met.

"Give your entire attention to what God is doing right now, and don't get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes."

Ladies & Gentlemen: We're in a holding pattern.

Griffin and I have been determined to have a brave & courageous child, and in doing so, knew we couldn't sweat the small stuff. The occasional skinned knee or the zipped chin could not be maladies for days. With that said, we now find ourselves in a 'crisis' of sorts--where I find myself struggling to find the balance of brave & courageous//acknowledging this is a difficult time.

Background Info:

Schaeffer's symptoms began to surface about 2months ago-but being the dead of winter-and the peak of cold & flu season, we took the fever, lack of appetite and lethargy in stride.

Fast forward to today--where the 'symptomless' fever has been sporadic, but frequent enough to be bothersome. On 'fever days', SJ will take long naps & have very little appetite. We've had the gamot of tests done. X-Rays, blood work, urine samples--and for the most part, all have been well within the 'normal' range.

To our doctor, the only remarkable thing has been SJ's sed. rate (definition: sedimentation rate: the speed at which red blood cells settle to the bottom of a column of citrated blood measured in millimeters deposited per hour and which is used especially in diagnosing the progress of various abnormal conditions--as chronic infections).

Our Next Steps:

Because of the raise in SJ's sed rate, she will now have a chest & sinus X-Ray as well as an abdominal ultrasound. From what I understand, these tests are done to search for hidden infection.

Once the X-Rays & the ultrasound are complete and the results are in, we will be heading to DeVos Children's Hospital in Grand Rapids to see a Pediatric Specialist.

What you can Do:

-pray that Schaeffer is able to remain calm during her testing, yeilding best possible results

-pray for wisdom for the doctors who read the scans, that they will have a definite diagnosis

-pray that Griffin and I will see God's clear will, being united in decision making for SJ's care

-pray that our hearts are prepared for the diagnosis/no diagnosis

Thank you friends & family for your prayers & best wishes. We'll keep you updated on information as we have it available.